Colons are Overrated

Finally, rock-free

2011-12-16T07:22:00.000-05:00

I'm home, and happy (and very thankful) to report that I am now stone-free. Actually, I got to bring my stones home :)
The surgery went really well, and there were no complications, my k-pouch is doing great.
I got to the Cleveland Clinic at 11am and surgery was around 2pm. Two sticks to get the IV started and when I got into the OR and the anesthesiologist started to push the anesthesia it burned like crazy so they knew that one was going to blow too, they said they'd start another once I was asleep. That was a blessing because I woke up with two other IVs and two additional holes with bruises from other attempts. I don't care because I wasn't awake to feel it!
Surgery took about 2 hours, but Dr Monga (who is AWESOME!) was able to remove 4 stones without breaking them up. Three are about the size of marbles and the 4th about the size of a BB. The 5th stone was too big to pull out so they broke it up, it was also attached to a staple at the edge of the valve of my pouch. Doc said they had to pull the staple out with the stone fragments but because my pouch is mature there shouldn't be any issues. The stone they broke apart was sent to pathology and hopefully in a few days I'll know what they are made of. No additional incisions were made but I did spend the night in the hospital.
Here are a couple of pics. The 1st one was taken during the surgery by the doc of the big stone that was stuck to a staple by my valve. The 2nd pic is the 4 stones I got to take home.

I woke up with a FOLEY catheter in my k-pouch! and it was inside of an ostomy bag which was really strange but their little arrangement as a constant drain did work.
For dinner I was allowed to eat "anything" so the hospital kindly brought a salad, mashed potatoes and diced peaches. LOL. On a good day I wouldn't eat all three of those in one sitting, much less with a tiny little foley cath emptying my pouch! I ate some pudding for dinner, which was perfect because you're never hungry after surgery anyways.
The constant drain came out the day after surgery and they held me 4 additional hours so I could intubate a couple of times on my own to make sure there were no issues. My stoma was pretty swollen at first, but he's almost back to normal now.
I'm still pretty sore all over and my stoma is sore, he's also got two white stripes running down, looks like a layer of mucosa was scraped off somehow. I'm sure he'll heal in time.
I'm glad its over, really really glad my k-pouch is fine, and glad to be stone-free.

Something will be done

2011-11-15T19:36:00.001-05:00

So the stone-destructing date is set - Dec 13th.
I emailed with the urologist Dr Monga (who is very nice) and he agreed that Dr Shen or Dr Remzi could be at the surgery to look after the k-pouch since this is his first time blasting bowel stones. He's done stones in the gallbladder, kidney and bladder and I'm very confident in his skills, its just I know the valve of the k-pouch is kinda fragile (for lack of a better word) and I don't know how much manipulation it can take. I feel better that my Docs who really know k-pouches will be there to look out for me!
So, I'm nervous, or perhaps anxious is a better word. Not as bad as I was before, because now I do believe this really is the best option for me, and I know I'm in the best hands.
Surgery is always scary when general anesthesia is concerned, and I've had enough of it to know that things don't always go as planned. Sometimes as I lie awake at night trying to sleep a lot of memories come back, and as I start to imagine what will happen next I can smell the OR, and feel the cold room and see the machines and tiny table. I remember what its like to scoot onto it and have electrodes hooked up and lay there wondering how far my heart rate will go up before they sedate me. Its not always fear of the unknown that is the worst.
My mom is coming up to spend time with me and look after me 'just because'. I've had health problems since I was a kid so we have this hospital bond you see. I'm glad she's coming,
But right now, I need to focus on school, finals are right around the corner.

Something must be done

2011-11-04T21:17:00.001-04:00

Saw Dr Shen today and we talked about what to do with the rocks in my pouch. He said, I could let them stay there as I am currently asymptomatic, but he doesn't recommend it, the rocks may occlude the inlet from my small bowel at any time and I could be obstructed. So, that'ts not good. He said not sure what the rocks are made from, they won't go away on their own, and they may even grow. So, that's not good either.
So, I'm going to go ahead with this procedure with the urologist where he goes in through the stoma with a tool and camera and blasts them apart with his mini jack-hammer. I discussed my concerns about a urologist messing about with my k-pouch (which of course is made of small bowel) and the risk of the valve being damaged etc. he still says he thinks it is better than open surgery and I trust him. And he agreed that he or Dr Remzi should be there during the procedure, since a urologist really doesn't know about a k-pouch. He's just really good with his stone-destructing tool. So I feel a lot better knowing one of them will be there since this is a 1st time event. Making history isn't as fun as it sounds. Hopefully going to do it early December and I'll get a date after I talk to the urologist.
So....
I feel better having had a thorough discussion about it with Dr Shen. And hopefully in December I'll get rid of these stones.

K-pouch rocks

2011-10-06T20:47:00.000-04:00

Literally.
I have 5 little rocks in my pouch.
Dr Shen did a scope on me this afternoon and much to our mutual chagrin, he found some rocks.
The the really bad part is that they were too big for him to pull out, and they are sort of plugging up the entrance of my small bowel to my pouch and that is part of what is making me backed up, nauseated etc.
So I'm on a full liquid diet until further notice.
Gonna consult with my surgeon Dr Remzi and also with a urologist because there is a therapy that is used to use sound waves to break up kidney stones, and I think the idea is to use it on me to break up the stones in my pouch so they can be removed. Hopefully, I won't need surgery.
So, what are these stones? Don't think we'll know till they pull them out and send them to the lab.
Most painful scoping procedure I've had and I was sedated :(
Its been a long day and I'm ready for bed.
On the up-side, at least we know what the problem is.

If its not one thing

2011-10-05T21:15:00.001-04:00

So I spent all day Friday in the ER, and all weekend in the hospital, again.
*sigh*

I thought I had a GI bug. Really bad nausea, diarrhea and then I threw up. Couldn't even look at food, couldn't get myself to drink and just knew I was getting dehydrated. Upper abdominal pain and radiating to my back as well. Thursday night diarrhea got so bad I had to intubate 4 times, had my husband drive to me the local ER at 7am because I just can't drink enough and I'm miserable.
Got some fluids, some anti-nausea meds and some pain relief. I got 1000ml of normal saline and 500ml of CT contrast down and only peed 2 times. By noon, starting to feel much better and request to go home. Attending Dr. comes in 'you have a massive chron's flare, you need a surgical consult.'
Well the "S" word means I'm NOT hanging out at the local hospital so I tell them in my tears that if its that bad I'm going to Cleveland Clinic. So, after some steriods and some antibacterials IV they packed me up and sent me off.
Admitted to CC Friday night and wasn't discharged until Monday night with no answers.
Chron's flare? At first they say yes, then, not sure.
They think obstruction, but change their mind because no more vomiting, holding down fluids ok, not like any obstruction pain I've had before.
Peritonitis?
Some kind of inflammation outside the pouch? maybe or, well, it must be the pouch. Have a pouchoscopy - pouch is CLEAN
Not pouchitis. (GOOD).
Well my pancreatic enzymes are elevated but not like for acute pancreatitis (which I have had before) but my blood glucose is also elevated which is really abnormal for me.
I THINK its chronic pancreatitis, idiopathic - which happens in 30% of cases. But as of now its still a big ???? and just another.... will I ever really be healthy?

Why a K-pouch is better

2011-05-31T10:23:00.000-04:00

Top 5 reasons my K-pouch is better

Better than a j-pouch

5. I only have to go to the bathroom 4-5 times a day
4. I sleep through the night
3. No butt-burn
2. No urgency
1. No embarrassing noises!!

Better than an ileostomy

5. I only have to empty 4-5 times a day
4. I sleep through the night
3. No bag
2. No appliance
1. No Leaks!!!

Better than a colon
No. but, not a bad 2nd :)

4 Years (more thoughts)

2011-05-11T07:14:00.004-04:00

4 years ago today I was up before dawn after having barely slept through the night I was so nervous. Nervous about surgery, nervous about getting (maybe) my k-pouch. Nervous about my alarm not going off. Nervous about how many sticks it would take to get an IV started. -- kinda like that old tootsie roll commercial "how many sticks DOES it take to get Katie???"

4 years ago I ate my last big salad. I can't say I miss salad too often not being a huge fan of lettuce to begin with, but sometimes, yes sometimes I could go for a nice big salad. Then I ponder whether its worth trying to coax lawn-mower clippings through my cath and PASS.

4 years ago I had my worst post-surgical experience ever. I was given a drug to reverse the effects of morphine because of severe respiratory distress. You don't want to be awake 1 hour after your insides have been rearranged. I'm sure there's a post about that here somewhere but I don't even let myself remember it because....
some memories are best kept locked away.

4 years ago I said good-bye to my ileostomy (hopefully forever, but I doubt it. I'll settle for 'til I'm old and gray).

4 years ago I lost my rectum. I still struggle with that. I'll make jokes about it, and I try to shrug it off and say I'm better off, and considering what I was living with I am. I'm free of that horrible fistula and all crap - literally. But, all things being equal I'd still rather poop like any other person in the world.

4 years ago I had my last surgery. Hopefully my last surgery for a long, long time.

3 1/2 years ago I last saw my fantastic and kind surgeon Dr Remzi. When asked when he wanted to see me again he replied "when you have a problem." Dear Dr Remzi, I love you, I hope I never have to visit you again :)
1 year ago I stopped taking all my crohn's meds (Dr's Orders!)
9-10 successive "clean pouch" reports from Dr. Shen and I'm happy to say I'm practically Cleveland Clinic Free. 1 year annual visits only (hope I don't fall off the wagon!)

Happy Birth-day to my k-pouch

4 Years....

2011-04-20T07:17:00.000-04:00

So my 4 year k-pouch birthday is right around the corner... May 11.
My parents are coming up for a visit the week before and my mom will be here for Mother's Day. The last time we spent Mother's Day together I was 2 days post-op.
When I think about it, I kinda want to cry.
Cry because I've been through so much and my mom (dad too) have always been there for me. And cry because I'm so happy to be so healthy and doing so well.
I have a lot to be thankful for, and I know it. Some days I know it more than other days.

I always send a 'thank-you' email to Dr Remzi, you know, thanks for taking a chance on me, thanks for caring about me... I vaguely wonder if it annoys him, but its only once a year ;)

I realized a few days ago that sometime in the last year I became really comfortable with my k-pouch. I mean, it probably took me a good year to just get used to it but now... now its like not really a big deal to me any more. And I think I figured it all out over a combination of things. In school we were learning about and watched a short video clip (Patient perspective) on Continuous Ambulatory Peritoneal Dialysis. And I was sitting there thinking 'wow, its amazing what people can get used to, how you can have your life turned upside down and just make a new normal for yourself and be OK'. Hello..... you stick a catheter in your belly several times a day to go to the bathroom. Oh yeah....that was definitely life changing

And I don't dream about going to the bathroom normally anymore. I should probably preface that by saying that when I had my j-pouch I had toilet dreams all the time. All the time all the time. Now I rarely dream about it, maybe a once or twice a year, and mostly I have my k-pouch. Of course, in my dreams I'm always terrified that someone catches me emptying and thinks I'm a freak,but C'est la vie.

I don't think of myself as a patient anymore. I'm not on any meds and I'm on only yearly pouch scopes now. I don't see the GI or the surgeon every other month and I haven't had blood drawn in over a year (AMAZING). Now I'm a nursing student and I help other patients get well, I help them get out of bed after surgery and I can say with true compassion "I know its hard."

And its really awesome not to be the one lying in the hospital bed.

Acute abdominal pain = utter terror

2011-03-30T16:59:00.000-04:00

So on Tuesday around 2pm my belly started to hurt. Didn't have anything unusual for lunch.
It hurt in the upper portion just below the sternum and went through to my back. And it just kept getting worse and worse. And I had an Anatomy test on Tuesday at 3pm so I went and sat there trying to focus when all I could think about was "am I going to have to go to the ER?"
I drove home in tears because the pain was so severe. And by severe I mean on that PAIN scale they like to give you, I'm at an 8 and I am scared.

See, I've had acute pancreatitis, about.... 6 or so years ago and it was awful. And thats what comes to mind. Another bout of it, so of course I do my symptom checker at web md and of course thats on the list and it says for severe abdominal pain go to the hospital and I'm certainly considering it, but my husband is at work and after all my surgeries and procedures and problems I know that I pretty much go straight to panic when something isn't right. So I think that I'll just wait til 5:30 when Shon comes home and if its still bad then we'll go.

And all those thoughts come, you know?
I'll be at the local ER that's never even heard of the K-pouch and I will have to explain EVERYTHING and have the horror of getting an IV started with my minuscule veins. And then I'll be hospitalized for about 4 days and miss a bunch of school and with my luck I'll be on the same floor that all my school friends do their clinical experiences on....
So, I take a pepcid because I was given IV pepcid when I was hospitalized with acute pancreatitis and pray and pray - God I DO NO WANT to be back in the hospital.
I decided to empty my pouch just in case, but not much came out (I didn't really expect anything)
About an hour later the pain is gone (I was in severe pain for almost 3 hours).
I went to bed exhausted and the mental images coming to me of trying to sleep in the hospital with my little sore hand IV and the loneliness and the smell were so vivid....
Thank you God that I am sleeping at home, help me not to be overwhelmed by my own stupid imagination.

So what was it?
Do I have an ulcer? Can ulcer pain be that severe and last that long?
Will it come back?
Ate the same thing today that I ate yesterday and I feel fine. I'm exhausted emotionally, mentally, physically, but fine.
And I really hate it that I am so scared of being back in the hospital.
But I am,
I am utterly terrified.

I've got a feeling

2011-03-28T21:28:00.000-04:00

And its not what you'd expect.
Its about this whole k-pouch feeling of needing to empty, to put it bluntly - to poop.
I realized last night that I still don't have it down - that feeling that says its time to go- and I'm close now to my 4 year k-pouch birthday.
See, last night, I did something really stupid. I ate a large dinner late at night and then followed it with an even later snack (oink - I know, did I say it was stupid?) Now, I emptied just before bed and I felt like I'd be fine until the alarm rang at 6am.
No.
So I woke with a start at 3am. The kind of start that says your own body woke you like 'hey, I have to pee' or 'I have a migraine' or 'I'm gonna puke'. That kind of start. So I'm laying there taking a mental tally trying to figure it out. Well, I think, I must have to pee and my brain hasn't caught up. So up I go, take care of business and lay back down and try to go back to sleep. Hmmmm. Something's not right, the peeing didn't take care of that body alarm feeling. And I'm just laying there and then it dawns on me, pouch must be full. I guess. And I don't know if it was the mental fog of sleep or just still trying to get a handle on the full-pouch feeling itself or maybe a combo of the two but I just couldn't make up my mind if that was the problem.
So I lay there for a minute or so trying to decide if I was ready to make the effort to empty at 3am when my body decided for me. Go Do It.
Thank God I have this cath thing down because otherwise I can only imagine how long trying to insert it in a half-away stupor could take. Reminded me of my emptying on a schedule days when I was still growing my pouch, what a pain that was!
So yes, it was the pouch and back to bed I went.
And as I'm laying there now fully awake unfortunately I was thinking, man, I still sometimes have trouble telling when the pouch is full and needs to be emptied. Sometimes, especially after a meal when I'm full from dinner or if it happens at an unexpected time because of something I ate causing gas or something....
Its just a weird feeling.
Not like a "I have to poop" kind of feeling.
Just....
Full. I guess, and if I wait too long it actually starts to hurt. Which in turn starts to make me nervous. And I swear to you when it gets that full I can feel the waves of peristalsis come and go, which increase the fullness/pain feeling. And then my belly swells under my stoma like a water balloon.
Thankfully when its that full I usually do get a nice "relief" sensation.
But a full pouch just has a weird feeling. And I hope I get a handle on it soon.

I'm sorry

2011-03-15T13:52:00.000-04:00

I think I've spent a good part of my life apologizing for my "bathroom problems".
I mean, I can't help it that my colon turned traitor on me, yet I find myself constantly apologizing for it.

I was 13 when I got my j-pouch so every family trip "Dad, I'm sorry, can we stop again I need to go."
to my brother "David, sorry, can you let me in the bathroom first please?"
to my friends "sorry guys, give me a minute"
to my teachers "sorry, I need to use the bathroom"
Don't get me wrong, my family has never ever made me feel like my bathroom issues interfered with our lives or plans, but you can't help but notice how often people are waiting on you.
And of course things only got worse when I had that stupid fistula and the need to go became much more urgent. Sorry, I'll be right back, sorry I took so long, sorry I had to leave in the middle of dinner (again). Thank God that is over with.
So, now I have my k-pouch and I go a LOT less, only 4-5 times a day yet I still say it all the time.
"Sorry, I'll be back in a few minutes, Sorry, can you excuse me? Sorry, I need to be going, I have ah, something I need to take care of..."
Because I'm not exactly in and out in 2 minutes, and when you're gone for 5 or so minutes some people worry about you and some people talk about your absence and some people are thankfully kind enough to ignore the fact that you've been gone for so long.
I'm just bringing it up because I caught myself doing it again and I thought "Why in the world am I apologizing?" I guess I feel like my bathroom problems cause more disruption to other peoples lives than even my own which is total nonsense.
The other funny thing is that I noticed I have trouble saying "I need to use the bathroom." I always say (to people that know me) "I need to pouch" or "I need to empty my pouch" because it is functionally SO DIFFERENT from the feeling of going to the bathroom, my brain doesn't really connect the dots. I know I'm pooping but yet since I'm sticking a catheter in my belly and I stand or kneel I'm just..... emptying my pouch. Its not really the same to me.
Maybe it stems from a sense of shame or embarrassment about the frequency, length of time, smell, etc.
Possibly, Probably. I'm not sure that I"ll ever get over it.
Sorry.

Am I a freak?

2011-03-08T15:52:00.000-05:00

I'd like to think NOT, but sometimes I kinda feel like it.
I'm a nursing student, and no one at my school knows I have a stoma or any history of digestive problems for that matter. I've been debating about sharing it with a teacher or fellow students but...
I recently was part of a group presentation on colon cancer and I did the portion about ostomies and care. Their faces.... the looks ranging from pity to disgust when I talked about ileostomies and stomal complications.
I kinda wanted to shout at them
I'm not an alien.

Do I want their pity?
No. I used to want pity, back when I was unhealthy I wanted people to take pity on me. But now, not now. No, because now I'm healthy BECAUSE I have this stoma.

I chose this yes. sort of. Options kind of limited you know between living with a horrible and chronic bowel condition that left me in debilitating pain and visits to the toilet over 12 times a day. Sure so I chose to have an ileo then I chose to get my K-pouch which is WAY better (for me).
Yes, its kinda freaky that I put a catheter in my belly to go to the bathroom and sometimes I freak myself out like if I forget to bring my cath in my carry on (truly happened to me). Stuck at JFK, just ate, feeling like I need to empty and suddenly discover NO CATH what the **** am I going to do???? Suffer for 2 hours before I made it to my home airport got my suitcase off the carousel and ran to the toilet to get some relief.

My Prof says "these people don't go to the bathroom once a day like you and me"
You and Me? I haven't been a part of that group for 20 years and I'm only 32.
I sit there and listen and try not to smirk.
Does that make me a freak?

I stand in the bathroom and look at my self in the mirror after a shower.
My abdomen has a nice fat, light pink scar that runs from just above my bellybutton to my pubic bone.
My belly is a little lumpy, it will never be cute and flat.
My little red stoma stares at me, he will be with me until I die.
And you know what? I'm pretty happy to have him. Pretty happy to have my K-pouch despite it all. Does that make me a freak?

A day in the life of a K-poucher Part II

2011-02-16T16:30:00.000-05:00

Part II - decided to publish in two parts because it was getting too long.

day 5

Breakfast: 6am coffee and oatmeal

pouching before heading off to class 6:45am consistency of liquid peanut butter. What the heck?? All I can think is it must be the remains of the black beans I had in my lunch yesterday, but, there wasn't a ton of them. And, I didn't eat any peanut butter.... Also, a bit of black bean clogged up the cath but not enough to make me stop, dig it out and start again (thankfully). In the bathroom about 7-8 minutes. I know I'm not completely empty "scraping the bottom of the barrel" but empty enough I should be fine until after lunch.

Lunch: 1pm went out with a friend had chix noodle soup, bread and an apple (no skin)

pouching about 3:45 when I got home and feeling full but not desperate. Good consistency but still a little sluggish. Still, out in 5 ok.

Dinner: 6:15pm baked potato (no skin) and turkey sausage

pouching at 7pm. ugh. fiber everywhere. what is it? apple? carrot? I dunno. All I know is I'm working the cath, moving it in and out, pressing on my belly, trying all the tricks. *sigh* I can't see any chunks, nothing is really clogging up anything its just... I dunno. apple I guess fibrous micro-morsels of apple. 10 minutes and i'm done just because I'm sick of messing with it. Should all come out by bedtime. bleh.

Empty b/f bed. 9:30 Amazingly enough the addition of potatoes at dinner did not make it worse. In fact, things went a little better, still fibrous bits of potato and a few black bean stow-aways. Not a huge problem, irrigated a couple of times and feeling nice and empty. still took about 10 mins. *sigh*

day 6

Breakfast: 6:30a coffee and cream of wheat

Pouching b/f class at 7am. Looks like potatoes are not the enemy - hooray. However, the skin around my stoma is looking a little red and angry. I put some stomahesive powder on it, and I will make sure to change my nursing pad (its what I use to cover feza) every time I empty for a while. In and out in 5

Lunch: 1pm grapefruit, spaghetti squash, ham yogurt (yes, I know I eat weird :oP )

Pouching at 2pm not really feeling the need to empty but I know I will later and don't want to mess with it at school. Also, meeting a friend for dinner after class so....

perfect consistency. Peristomal skin still not looking so good so I put some anti-fungal powder on this time. That usually clears things up in a day or so.

Dinner: 5:30 Chicken nuggets and chicken noodle soup

Home and pouching at 7:30p. Feeling very full and the invisible spaghetti squashes are causing a traffic jam. Not bad, only slightly annoying but I chewed well so not a huge problem. In and out in 7 or so.

Pouch b/f bed pretty good consistency despite the veggies. Irrigated a couple of times and out in 5-6 mins

tomorrow I'm headed to Cleveland Clinic for my 6 month scope so no breakfast :( and I'll be forced to empty in public restrooms *boo*

day 7

Breakfast: 7am coffee, water

Pouching around 8am and pretty watery with bits of carrot (i never remember to chew my soup :op). I irrigate until the return is pretty clear. I'll empty one more time up at CC before my scope just to be sure its as empty as it can be. Leaving in 30 mins. At least with no rectum there is no enema :/ Peristomal skin looking better today but I still put some powder on.

Ok so I get to CC and in the pre-procedure area, tell the nurse I need to empty my pouch one last time b/f the scope. Go to the bathroom start to unpack my gear when I realize that I have no Lube to put my cath in. This is the bag I took on an airplane back in Dec so of course I had to remove all the little bottles of goo. *sigh*

Well I figured, stoma is probably wet enough, I hear that people intubate w/out lubricant, I'll give it a try. Well I can advance it up to the first hole but no farther. And my stomach is so tense 'cause I'm stressed about the procedure and I'm stressed about not having any lube and its just not going in. Pull it out, start again. Nothing. Try again, Nope. Not getting anywhere and so now I'm even more frustrated and its really really hard to relax your stomach muscles consciously when you're nervous/upset/frustrated.

So I just started praying 'God you know I'd really like to get this last little bit out b/f I go in there, please help me to relax!' And hooray I got it in! Not much came out but I figure, well better than nothing.

Oh side note here: I intubate standing up. I can't seem to do it while I'm sitting. Sometimes I'll squat or kneel in front of the toilet, sometimes I'll just use the sink (depending upon where I am).

So I went and got my scope and it really went pretty well. It didn't hurt as much as last time though it did get pretty intense for a while. I'm not much of a verbal expressor of pain so it was interesting from a purely medical standpoint how my body reacted to the stress since I was awake. BP went from 97/71 pre-procedure to 131/92 immediately post procedure and I broke out in a cold sweat. I say cold b/c I was FREEZING in the procedure room. But the nurse got a towel for my forehead. But oddly, a couple of hours later when I was being checked in for my office visit the nurse took my BP and it was 84/56. "Is it normally low?" yes, but not that low. Well, probably because your body is still recovering from the sedation of the scope. oh. well I wasn't sedated. Really? Hmmm.

So after scope went and grabbed a bowl of curried lentil soup for lunch about 11:45. Emptied my pouch about 1pm feeling a little bloated no surprise b/c of the air in there. Had to empty in a public restroom on the GI floor, but was able to use the handicap stall so had plenty of room for my stuff. Cath in OK (thankfully I managed to procure some lube from a helpful nurse) and output ok except for the gassiness.

Believe me, when I know I'm going to be emptying in a public area I chew the life out of my food, even soft veggies in soups. Cause you really don't wanna have to mess with a clogged cath when you're squashed in some foreign stall trying to be as quick as possible. Really just going for relief instead of "empty" at that point.

So awesome news I don't have to see the GI again for a year -- WOOOHOOOO and the pouch and valve looked great. He said I was a k-pouch poster child haha.

Oh, on the kind of bummer side he said majority of complications with the k-pouch he sees are due to WEIGHT GAIN. So, don't gain more that 5 lbs he says.

5 lbs? *sigh*

Now you can see while I live off cottage cheese and squash....

Ah, being a k-poucher, well it does have its challenges, but I'll take it any day over an ileo.

A day in the life of a K-poucher

2011-02-09T14:48:00.027-05:00

Sooooo I was looking back through some of my old posts and doing some thinking about what made me decide to get a k-pouch and all the research I did. I read tons and tons of forum posts and blogs and other such things. They were pretty helpful and instrumental in me making my decision because I really felt like I had a pretty good idea of what I was getting in to. And truly, I did because nothing that has happened since has really been a surprise, which is a good thing.

I thought I would give a day by day record of what I'm eating, how often I'm "pouching" (and by that I mean emptying my pouch) how long it takes me, what the output is like etc. That way, if there is anyone else out there wondering what the heck this catheter-crazy life is like has a better idea. So word of warning: I will be talking about poop. If that turns you off, better stop reading. But if you, like me and any other j-poucher or ileo out there has no problem with poop-talk then you're ok ;)

I generally empty 4 times a day unless I have a lot of gas or something doesn't agree with me. And no urgency. Often I'll empty proactively if I know I'll be away from home for several hours. Oh, and right now, I don't work, I'm a full-time student

day 1

Breakfast: coffee at 6a and egg around 7:30a

pro-active pouch before leaving for 9am class. Right now I don't feel the need to, but I may in an hour or so, best get it done so I'm not need during class. Last night's dinner was Quinoa w/ black beans, corn and tomatoes. I did chew it really well so output is good and no need to irrigate. Done in 5 min.

I think its funny how I get different layers depending upon what/when I've eaten. Can totally distinguish between dinner and coffee both exiting at the same time.

Lunch: Grapefruit 12noon, chix noodle soup (from a box) yogurt and cottage cheese. 1pm

More Coffee. 2pm

Pouch feels full and totally ready to empty before going back to class around 2pm. Pretty watery with lots of grapefruit bits but no clogs. I irrigate twice just to try and clean 'em out. 5 mins.

Since its so watery I need to be sure to drink plenty of water this afternoon.

Dinner: chili 6:15pm

pouch about 1 hour after dinner - feeling pretty full: consistency pretty average and doesn't need much coaxing to get out. about 5 mins

pouch before bed starting to feel full again. a little thicker and had to work the cath a little bit to get it to move (soooo slooooow) and by 'work the cath' I mean squeezing it produces a little suction and moving it in and out for pockets of air etc. Irrigated a few times to get that 'empty' feeling. Took about 7-9 minutes tonight.

Early day tomorrow - I have clinical so up at 5:15am

day 2

Breakfast: 5:45a Coffee and oatmeal

Pouching: sludgy - must be due to beans in chili and its moving crazy slow so working the cath and irrigating a few times. Why is it always when I'm in a hurry this takes longer than I want? 8-9 minutes

Lunch: 11a applesauce, cottage cheese and yogurt

I intentionality eat small lunches on my clinical day because I don't wanna have to empty til I get home.

Home and Pouch at 3pm - little gassy and feeling pretty ready to empty by the time I get home. output is good, in and out in 5 min.

Dinner 5pm Kung Pao Chicken with rice (yum!)

Pouching at 6pm and feeling full: pretty liquidy output o happy day. in and out in 5 no irrigation.

Pouch b/f bed 10pm: pretty liquidy and no problems but I irrigate once or twice b/c I like to feel empty when I go to bed.

day 3 (hooray for saturday)

Breakfast: 9a coffee (of course) oatmeal, pumpkin

Pouching at about 10:45a and feeling full. Not happy. All that rice and veggies coming back to haunt me. I really did chew it well but its just like a traffic jam. Cars fit fine until there's too many of them :( Irrigate, irrigate, irrigate. bleh. 10 minutes or so. I suffer for my stir-fry.

Lunch: 12noon spagetti squash and leftover quinoa w/ black beans, corn and turkey sausage.

pouching at 3pm. output slightly thick and veggie traffic jam but no clogs. had to irrigate a few times 8-9 minutes.

going to my niece's first birthday party tonight.

Dinner: 6pm pizza and steamed broccoli and cauliflower

Came home around 7:15 and couldnt' wait to empty my pouch - feeling so full and bloated. Thankfully cath in ok and stuff out ok 5 mins tops and I'm feeling a lot better.

Empty around 11pm right b/f bed. Lots of broccoli bits but nothing to cause a fuss because broccoli is small :)

day 4

breakfast: 9a coffee and cream of wheat

Pouching b/f leaving for church 10:15

Lunch: 1 pm Chipotle burrito bowl. (beef, beans, rice)

pouching around 2:15 and pouch feeling pretty full. Liquidy and no real need to irrigate in and out in 5 hooray

Dinner: 7:15pm homemade buffalo chicken pizza (yes, I know, Ihad pizza yesterday. But this is SO much better than take-out!) and a Sunday night tradition :)

Pouching around 8:30. Feeling full and not yet uncomfortable and since I'll empty again b/f bed might as well go ahead a get it done. A bit sludgy because of the black beans at lunch had to irrigate twice but otherwise OK. no clogs so I chewed well :) about 7 mins.

Pouching at 10:30 output good irrigated once for that "fresh pouch" feeling out in 5.

to be continued....

My 6 month scope coming up

2011-02-07T17:41:00.002-05:00

Well, I'm just 9 days away from my 6 month -pouch scope.

And I'm nervous. I always am, and as many times as I've had it done I shouldn't be but...

It hurts. A lot.

And I could have sedation but that would involve starting and IV which is also horrible since all my veins are blown. And for a 10 minute procedure it just seems like overkill. And of course if I'm sedated I have to have a driver which means somebody has to miss work (my husband). Then I feel hung-over and loopy the rest of the day. All to avoid 5 minutes of pain - only 5 mins or so because it doesn't hurt the entire time. Just when my pouch starts to be full of air from the stupid scope.

Not really worth it.

I'm not nervous about the biopsy, or even if my pouch is clean because I don't really believe I have Crohn's disease.. but thats a whole 'nother story.

Anyways. Its not for a week but I'm thinking about it off and on every day now and I just feel better if I can tell someone.

I'm nervous. I hate it. And, I wish I didn't have to go.

I'm ranting about vegetables..

2010-12-04T13:26:00.003-05:00

Actually, I'm ranting about all fruits and vegetables as I can't seem to be able to eat more than 2-3 in a day, and that depends on what they are too.

I suppose I wouldn't rant if I could live off of things like crackers and pudding and the odd multi-vitamin. But of course, I can't. If I gain too much weight (say 15lbs or so) I could compromise my pouch by putting too much pressure on the valve. I can't afford to lose it so obviously the incentive to stay trim is pretty high. But since I can't eat salad, or really any raw veggies for that matter.... its a big challenge.

Oh and don't say cooked veggies because thats not much better. I'll tell you its the fiber. Example: Pumpkin.

Yes, I am a fiend for pumpkin. Love it. I stop just short of eating it right out of the can. I like fresh too but lets be honest here, I save myself a lot of work by buying it canned. So pumpkin in a can but cooked already. Lets say mix it with a little cheesecake pudding and pumpkin pie spice (yum!) and eat 1/2 to 3/4 of a cup. Three hours later and I go to empty my pouch guess what? You ever try and suck pumpkin through a straw? No? Well just try and imagine it and you have a decent idea of what I'm going through. And drinking juice or coffee doesn't help thin in up. So its irrigate, irrigate, irrigate.

Add another veggie that day, cooked carrots or green beans, something you think wouldn't be that bad... ha. Pureed or not, they can only be broken down so far and what ever is left, thats what I have to try and get through my cath.

I warned you its a rant.

Do I like my K-pouch? YES, unequivocally preferable to any alternative plumbing method that can exist for me.

Am I tired of pulling my cath out to find two minute pieces of apple plugging up the hole of my cath. YES.

Trying to eat healthy when you poop through a catheter totally stinks.

3 years and counting...

2010-05-24T21:00:00.002-04:00

Well I made it to the 3 year mark!
And I'll admit, when I decided to go ahead and have this surgery I prayed that it last me 2 years. I figured 2 years will make it worth it. And here I am 3 years and going strong. Truly a blessing from God.
And I am really grateful, most of the time and some days (to my shame) not so much.
Because well, no 2 ways about it, the bottom line is that you stick a tube into your belly to go to the bathroom. Its not always easy and plenty of times its inconvenient. Sometimes its frustrating and sometimes it makes me sore.

I get annoyed with what I can't really eat. I get frustrated by how it seems like no matter how much I chew stuff up it causes me problems. And there's nothing quite like running a little late for work in the morning and discovering that what you thought would take 3-4 minutes is taking 10-15 because you're trying to suck blended veggies through a straw and this one piece of tomato is plugging up the hole. So you pull the cath out only to discover its not this huge chuck but rather 2 small pieces that got wedged together. HOW CAN I CHEW IT ANY SMALLER THAN THAT?!?!!?!?! *sigh*

I find I'm a lot less grateful when I compare myself to those of you who still have a colon and a lot MORE grateful when I think of all the poor souls out there with UC or Crohns who still go to the bathroom 12 times a day on a good day. Or when I think back to my awful fistula days and how much pain I was always in and how awful I felt and embarrassed I was all the time. A few moments of remembrance of that makes me well-up with gratitude!

I'm also off all my chrons meds now and only get a scope once a year. I haven't been hospitalized in 3 years and that is truly something to be grateful for.

2 Years!

2009-06-13T08:53:00.002-04:00

Well I'm a month late posting this blog which I'm sure you realize means I'm healthy and happy and spending a LOT less time thinking about my intestinal issues.

One more year and I haven't been hospitalized. I had my pouch scoped again in Feb and Dr Shen said it was "pristine" and I could stop taking 6mp. Hooray! No more monthly blood draws. I think my veins have finally recovered, I see them on a regular basis now...

So I'm off all chron's meds now which is awesome. And I would like to say also that I'm the only one in my office who didn't get sick over the winter. No colds, no flu. I have the immune system of an OX!

As far as the k-pouch and me goes.....
I'm cool with it. Emptying typically 4 times a day, never really had a problem getting the cath in. And I've emptied just about everywhere now including Epcot, strip-mall, target, airport, coffee shops. Its not always easy in these places but at least I'm not intimidated anymore.

I would say I'm totally adjusted now because the k-pouch even figures into my dreams! When I had the j-pouch I had bathroom dreams all the time, almost nightly I would say, and now once in a while I have k-pouch dreams. And I have to tell you about this last one....

I think this dream this shows is my underlying fear of having to be in an ER or hospital away from Cleveland where no one has even heard of a k-pouch let alone know how to deal with it. I've been toying with the idea of getting a medic-alert type of braclet/necklace with the CC colorectal surgeon # on it. Sometimes I think what if something happens to me and shon is not around....

Ok a littl background so bear with me: so since my rear-end has been closed off I don't a normal sensation to go the bathroom. My surgeon left the majority of my spincter muscles in tact so I can squeeze sort-of. It feels different though and of course with my stoma I get all sorts of weird "feelings" too. And I haven't sad on a toilet and pooped in.... hmm 3 1/2 years now. OK so in my dream I'm laying on a gourney and I think its the ER who knows why I'm in there but all the docs and nurses are hoovering over me and shon is at my head and all of a sudden I feel like I'm pooping. And I start screaming "I"m pooping! I'm POOPING!!" and I'm freaking out. And I just keeping screaming "I'm POOPING" and the Doctors are saying "oh, this is a good thing" and I'm in full out panic mode now and I'm still screaming "No, you don't understand I can't poop, I can't poop! This is BAD. Shon get me outta hear I gotta go to Cleveland, don't touch me! I CAN'T POOP"

When I woke up later on and remembered it and I just cracked up and the thought of myself paniced out of my mind and screaming I"m POOPING!

Life with alternative plumbing!

K-pouch birthday

2008-05-16T22:47:00.004-04:00

Happy Birthday Feza!!!

May 11, 2008 my k-pouch is officially 1 year old and I'm celebrating!

Not only is it a year with my new pouch (which by the way is doing great) but it also marks.....
- A year since I've spent the night in the hospital well my discharge after my surgery was on the 21st but we're close enough
- Over a year since I've been to the ER
- A year since I've had any surgery or procedure under anesthesia
- 6 months since I've seen my surgeon
- 4 months since I've seen my GI

On my k-pouch birthday I had a gigantic meal at a fantastic Tex-Mex Restaurant in San Antonio with my in-laws which was followed up by 6 hours at 6 Flags San Antonio. In my old j-pouch days a meal at a restaurant like that would've had me running to the bathroom every hour for the next 4 hours but on my special day I emptied not long after we got to the park and not again until just before dinner later that night! I road roller-coasters and had a great time and never once wondered where the nearest bathroom was!!! Its a land-mark occasion I tell you and I am thrilled beyond words with my new pouch.

Here's a couple of pictures of me, Shon and his sister Laura riding the ride "Scream" (basically the Power Tower if you're familiar with Cedar Point). It was awesome!!

To all my friends and family thanks so much for all your love and support, I couldn't have made it this far without you all. This will probably be my last pouch posting for a while - hoping that I'll have another hospital-free year and a fabulous Feza's 2nd birthday to report!

love,
katie

The infamous belly-dimple

2008-03-24T21:38:00.007-04:00

Finally I got some picts to show the world what I've been talking about.

For those of you who just drop by occasionally to see if I've updated on my progress, well I'm doing great except I've developed this dent in my belly above my little stoma.
Its not painful and I haven't noticed a significant change in intubating but intubating is a little different every day, how can I tell?

Its darker than the rest of my stomach and it appeared sometime in January. I believe it is more pronounced than it was a month ago. So tell me, should I tell the Doc?

The tissue is because my stoma drools and I don't want it on my clothes

The case of the magically reaapearring bellybutton

2008-02-24T21:50:00.000-05:00

For all you skeptics.

After my surgery I discovered that my bellybutton had been demolished, and I was devastated. You may say and I believe my mother and husband would agree with you that this was an overreaction given the circumstances. But consider for a moment, my spot.

My belly has been cut open a lot. There is nothing remotely attractive about the gigantic scar that runs down my belly. And now I have intestine sticking out too. My belly button was to me the last little thing that could remotely be considered cute and it was gone.

A couple of months ago it reappeared. Don't know how, don't even know exactly when but it was within a day or two of consoling another girl who was lamenting the loss of her bellybutton.

Don't believe me??? I'VE GOT PICTURES

1st picture was taken just weeks after my surgery, probably sometime in June. The scar is not fully healed you can see that there really is no bellybutton, just this funky line where the button used to be.

Now please observe picture two. TA-DA!!! Bellybutton is back (this picture was taken this month)

Well you may not consider it even remotely cute :) but but it a consolation to me to have it back. I've got enough battle scars.

I hate CAT scans

2008-01-16T18:17:00.000-05:00

Why, you ask? If you've had one or even know someone who's had one then you know they're painless and actually quick usually lasting less than 15 minutes. I've got just one word for you: barium.

I thought I had had every kind of barium that they can give you. The kind they mix with your favorite juice thereby making it detestable to you from that moment on. Theres a lot to drink but you can chug it on down. Then there is the 40oz bottle of liquid concrete. Its not like liquid concrete because of the consistency but because of the flavor and color. They can make it really cold and you can chug it and while 40 oz of cold grey salty crap is rough to chug you can manage to get most of it down before you realize just how nasty it is.

I was prepared to chug the contrast, I was ready, I almost felt like an athlete before a rough match you know, talking myself into it, ok you can do this! Then I got hit by the bad news, its a timed study and therefore a different kind of contrast. The radiologist said I had to drink this 20 oz bottle of liquid over the next 20 minutes "DON'T CHUG! You just sip it!" when the 20 minutes are up she promised to bring me another 20 oz bottle and when that was up 20 minutes later I get another one and then finally 60 minutes after I start sipping I get my CAT scan. Great.

Sip it?! I wasn't prepared. I took a sniff (smells fruity) and then a SIP. Hmmmmm. Slimy. Not as fruity tasting as it was smelling and its room temperature. SIP. Hmmmm, It doesn't seem horrible now but.... SIP oh yeah, I can tell I'm really going to hate this by the time I get to the bottom of bottle #1. I commented to Shon that it had the consistency of snot to which he heartily agreed (side note: never agree with someone who comments that what they have to ingest resembles some bodily fluid). The people sitting across from me sipped their Starbucks lattes and cast sidelong glances at my drink, I tried to pretend they were envious of me instead of the other way around. SIP.

Half-way through bottle #2 I started to get nauseated. I tried to convince Shon to try it but he said I was supposed to drink it and what good would it do if he drank it? SIP. The people sitting across from me wisely vacated their spots because I was beginning to turn the color of the barium, but meanwhile the people down the row just arrived with more Starbucks. SIP. I hate CAT scans. SIP. I hate people who drink Starbucks in front of people who cannot drink Starbucks. SIP. Bottle #3 arrives before I've convinced myself to finish bottle #2. The radiologist is kind enough to say that if I throw up I can still have the scan and just to drink as much as I possibly can. Comforting thought. SIP. I made it 2/3rds through bottle #3 when the radiologist was there to take me back thankfully she didn't scold me about the remains of the barium.

My stomach is FULL. My bladder is FULL. My k-pouch is FULL. I think I look like Twiddle-Dee from Alice in Wonderland. Lay down on the little tray to be put into the machine. Also have an IV for the IV contrast. Radiologist asks if I've ever had a CAT scan before. Yes. (my mental tally says I've had between 8-10 but I'm not exactly sure how many). I don't remember hating them so much though....So what does the IV contrast do? Oh, it makes you warm all over, especially your neck and head and then you feel like you're sucking on a tinfoil Popsicle and oh the best part - you feel like you peed yourself. Yes folks. Its weird, but true. How can a dye they inject make you feel like you peed yourself?? Who knows, all I can say is that when you're full of contrast its not hard to believe that you did. So there I lay, hot, bloated, holding my breath (per instructions) feeling like I just peed myself and thinking I hate CAT scans.

Thankful

2007-11-24T16:10:00.000-05:00

I didn't just want to make another "what I'm thankful for this year" post just because it was Thanksgiving so I held off a bit. But as I pondered what I wanted to write about I realized I do want to share what I'm thankful for.

I struggle a lot you see; doubt, fear, anger, depression, anxiety. I try and keep one foot in front of the other but I look around me all the time, at the wind and waves and it terrifies me and I lose sight of what God is doing and I start to sink. I cry out to Him and He always lifts me up but as I continue to struggle on sometimes I wonder if the storm will ever be over. Gently the Spirit whispers what do you have? Not, what do you NOT have? What do I have to be thankful for? Oh so much.

Salvation, my relationship with Christ.
A wonderful and caring husband. I pause here because I want to tell you a little bit about my partner and my best friend. He's not perfect, no and sometimes I really get upset with him, but OH the blessing of having him in my life. My companion who is never grossed out by me or my problems. I have sat trembling, naked, drugged with 3 or more tubes coming out of my body dragging around containers of fluid, caked with blood and mucus, crying and in pain and he has patiently and tenderly cleaned me up and kissed me. He prays for me and is patient with me. He knows just how to make me laugh and sometimes he can even read my mind. Those vows we took together, we have seen more worse than better, much more poverty than riches and much much more sickness than health and he's never complained. Thank you God, for Shon.

My family. My parents, my brother and my in-laws. They have all sacrificed for me and I can't even begin to repay them or show my gratitude enough.

My friends, my dear friends who have stood by me and listened when I needed to talk, who visited me when I was sick and who cheered me up when I was sad.

My doctors. Oh how thankful I am to be within an hour of the Cleveland Clinic. When people spend their life-savings to go to this hospital and see the same doctors that I can see. They're not just the best at what they do they genuinely care for me. They are kind and compassionate, they can make me laugh and they do they're best to help me. That God brought us here when I never even thought I'd want to live in Ohio.

My k-pouch. I'm so thankful for my k-pouch. Despite everything I went through to get it and any other problems I might have as a result of all my surgeries I would do it all again in an instant. It's important that I remind myself of this because I AM having other problems now that may very well be a result of so much surgery. Its hard too because webmd just can't help me and my regular doctors are so befuddled by my anatomical abnormalities they don't know where to begin. I may be heading back to the CC soon so please pray for me.

Its too easy to lose sight of the good things, easy to forget the things that I have and mourn the things that I don't have. To wish for more money, better health, nicer things, a better job. But I'm trying to be thankful every day, because everything I have is a gift from God.

I hope you're thankful too.

Poster Kock Poucher

2007-10-31T19:08:00.000-04:00

Thats me.
I saw my dear surgeon today and that's what he called me - a poster Kock-poucher. He even suggested that I write in to a journal that the Cleveland Clinic publishes called the Pouch-O-Gram and tell them my story. He said that the Kock pouch just isn't done very often anymore because it requires a tremendous amount of skill in the surgeon and a very motivated patient but it's a great option for people like me. He said I should let the world know how much I love it.

My visit didn't start off that great though. It started with being stuck three times just for blood. The nurse said I didn't have veins that God just drew lines on my arms. They did eventually get it though and the tech really was good. She was kind and she took care to be as gentle as possible and distract me by talking.

Then I went upstairs and when the nurse was taking me back I passed Dr Remzi in the hall, he said to the nurse "please be quick, I need to leave in 15 minutes." As I sat in the exam room after the nurse left though I felt distraught. I don't want to feel rushed, I don't need a lot of attention but I do need some time where he's not running out the door. So I just started to pray, I prayed that God would give Dr Remzi the opportunity to go do what he needs to do and then come back. I prayed "Oh God, if I could just have his undivided attention for 10 minutes - I'd settle for 7 if I can speak clearly." He came in shortly after I finished praying. I had been standing and leaning against a wall when he came in and he took a look at me and my stoma (Looks good!) then he mentioned an email I had sent him last week informing him of another problem I'm having. He said "You look concerned and I don't wanna rush you. I have a meeting I have to go to. Can you wait? I'll be back at 4pm" (it was 3:15) YES! Thank you, thank you, thank you God.

So he came back in promptly at 4 trailing his nurse and a Fellow. Now the most uncomfortable part of the visit came, he wanted to examine my perianal wound to make sure it wasn't the source of any of my new issues. Not only did I have to kneel and "assume the position" but this stupid table actually bends in the middle and jacks your rear high into the air so the doctor can get a really good look. Well now that my dignity has left the room.....

My consolation was that it was short-lived and probably the last time that will ever happen again, a fortunate side effect of having the rectum removed!

After that we got to talk, and I told him that I wanted to tell him the good things in my life since surgery and not just come in to talk about problems. He heartily assented and I related the following:

#1 I sleep through the night, all the time. I haven't slept through the night since I was 12 (before I had UC and lost my colon) and now I do it all the time. I don't have to get up to go to the bathroom and I can't even begin to express how awesome that is.
Dr Remzi was grinning from ear to ear at this point
#2 I go to the bathroom 4 times a day. 4 times a day. There is no way to relate to you people with colons what that kind of freedom means to me.

I was practically choking back tears of gratitude and he was still grinning and he turned to his Fellow and said "Look at her! She's a model of the success this surgery can be. I was reluctant to do this and I made her wait but she proved to me she was motivated and just look at her!"

Thats when he said I was a poster K-poucher.

Off Topic ---- Contentment

2007-10-10T06:47:00.000-04:00

So the whole reason I created this blog site was so I'd have a place to come and rant away my frustrations with my health, to explain to people whats happening with me now and journal really. Its been incredibly therapeutic for me to come here and write everything thats on my heart and mind. Say things that I wouldn't have the courage to say face to face....

And I told myself when I started doing this that this was supposed to be about that, and I'm not going to write if I don't have something to say or something I needed to get off my chest. Too many blogs end up being ridiculous and mundane. This is not "A day in the life of Katie." But something has been on my heart a lot recently and while its not entirely health-related I did want to "get it out" so to speak.

I think one of the biggest things that God has been trying to teach me over the last 3 years is contentment. He stripped me of everything that I took pride and security in: My independence; we were quite independent in Chicago. My job; I took great pride in being a Media Producer at Wheaton college. My health, whats better than being young and healthy? My dreams of where I expected Shon and I to be when we'd been married 5 years. On our 5 year wedding anniversary (Aug 18, 2006) I was having an outpatient surgery to repair my fistula.

Of course my natural reaction to having everything taken away (and taken away all at once) was just to get angry. God why did you bring us here? Why is Shon having a hard time getting into school? Why don't I have a better job (I worked at Chic FilA) I've got a college degree! And why oh why oh why won't you fix this fistula and let me go back to normal? I was miserable for a long time.

And now? Now the fistula was never fixed and I ended up having another big surgery and now I'll be different the rest of my life. I don't work at Chic Fil A any more but I have a job that does not challenge me or interest me. Shon is still in school and it is hard for him. We still live in his grandfather's house. But my perspective? Oh, its changed completely. I may be different but I'm only in the bathroom 4 times a day now - hooray! My job pays the bills and keeps me busy, I have excellent health insurance. Shon is in school and his grandfather pays for it, no student loans for us and we don't have to pay rent at the house, just utilities. We may be poor by American standards but I know that we are rich. We don't lack for anything that we need and God so often blesses us by giving us things that we DON'T need. When I started focusing on that instead of looking at everyone around us. Comparing myself to them and asking God why He didn't do some of the same things for us. It was like He just kept saying "My child, I have a plan for YOU and it is different from the plan I have for THEM."

So I am learning to be content. The first step was to let go of the dreams I had for Shon and I and what I thought would make the best life. The 2nd step was to stop comparing myself to everyone else around me. After all, what do I need that God has not supplied? And the 3rd step? Well thats the hard one..... keeping it up.

Midnight ramblings

2007-09-28T23:02:00.000-04:00

I've been struggling lately in figuring out just exactly what is going to be normal for me. I would say that about 80% of the time I feel really good. Really good like I've never had surgery and everything is great. Another 15% I feel so-so. Maybe my pouch is bothering me or I'm concerned about something (health-wise) or just feel out of sorts. That last 5% is feeling bad. Feeling bad like moderate abdominal pain or nausea, enough to make me leave work early or curtail my activities for the rest of the day. And every time I have one of those days where I feel bad I get worried, whats wrong with me now? Is this going to get worse? What if I throw up? What if the pain becomes severe? Am I going to end up in the ER again? What if I'm just being a big baby?

I don't trust myself, I want to be wise so when I feel badly I really take it easy (more so than I would've done 2 years ago). So many problems can be made worse by NOT going to the doctor. I've learned that lesson, now I've got to keep the pendulum from swinging in the other direction. I try and keep myself calm at least outwardly but I panic internally. I talk myself down. No matter what God's in control. But I don't want to spend any more nights in the hospital, the mere thought makes me want to burst into tears.

When I feel good I'm on top of the world and then when I don't feel so good I begin to despair. I'm praying constantly. O God, am I going to be sick the rest of my life? Really chronically ill where I can't hold down a job? Will I be healthy and well? Can I lead a really normal life again? Or will I float somewhere between? Right now I feel its the latter. If you were to ask me if I considered myself healthy more than likely I would respond "yes" but when I look back over the last month at how many days I left work early because I felt sick I get discouraged. Perhaps I'm not as healthy as I'd like to believe. Sometimes I think I'm overreacting to the pain I experience. But how can I measure? Who am I supposed to compare myself to? You? Thats hardly fair.

I don't want to make a huge deal out of the things I've been through and how my life has been altered but I can't ignore it, its impossible and unrealistic. Perhaps I just don't know how to manage living with a chronic illness. See, back when I was a kid I was told I had UC and once had my colon out I continued on happily cured. Now I'm told I have Crohns disease and to tell you the truth I've never really believed it. It seems ridiculous that the best doctors on the planet can tell me that and I think they really don't know what they're talking about. After all, I don't have the symptoms that Crohns patients have.... or do I? Perhaps I need to settle down and give it some thought because right now I just don't know what it all means.

I believe that God not just allowed but chose for these things to happen to me. I'm done being mad at Him for it (at least for now!) He's got this huge and amazing plan and I'm a part of it. I don't know what my part means, but I know that God only does GOOD things, everything He does is excellent. I want to be a part of that, even if my part is hard and scary and I don't know what is going to happen next. But I covet your prayers because this trust thing doesn't come naturally to me.

Pray that I would use discernment with regard to my health...... celebrate the good days and act and think wisely on the bad.

Another Cleveland Clinic adventure

2007-09-13T18:14:00.000-04:00

Do you ever feel like your life is surreal? Today as I was walking down to the break room at work to refresh my coffee I was just bouncing along happy with how the day was going and looking forward to lunch when I was struck forcibly with a memory from yesterday. Yesterday at the CC right about that exact same time I was flat on by back being worked on by my surgeon and watched intently by 3 nurses. It almost didn't seem real, except for the memory being incredibly accurate and intense and of course my familiarity and intimate knowledge of CC since I have spent so much time there. It occurred to me how strange it was that one day I'm subjected to the most bizarre and often painful procedures and the next day I just go on with life. I guess there's really no other way to do it.

Well, normally I head my adventures under a specific title of Colorectal or Gastro, but since I happened to have adventures in both yesterday I'll stick with the generic heading.

So I started the morning with an appointment to see the ET nurse (stoma nurse) about the mucocutaneous separation I have that is not really healing well. I was up there 6 weeks ago and was told at that point it wasn't deep (good) and to just pack it with a special powder when I change my dressing. Well it didn't really get better so I'm laying on the little exam table and the nurse and I chat about kock pouches etc and she decides to bring in a 2nd ET nurse who has a little more experience than her. This new ET nurse and I chat and discuss the situation, she measures the separation and then I point out this little bump at the top of the separation, she takes a good look and says she doesn't like the look of it and she wants to call in my surgeon since he is in the office. She mentions something along the lines of "he may want us to take it off with Nitrous" I think to myself, maybe she's talking about freezing it off, like they do for warts. But I don't want to ask because if I haven't mentioned it before, I have an overactive imagination. I just decide to wait.

In walks my surgeon who says hi then gets some gloves on and starts inspecting me. Then he asks for a probe. Well I know whats coming because last time anyone stuck a q-tip (probe) in there it hurt, and I wasn't disappointed this time either. So he starts poking around and I'm trying desperately not to flinch and the nurses are saying "don't hold your breath! take nice, slow deep breaths...." Then my surgeon announces that he thinks its an ulcer and we need to do something about it. He says he wants to inject a steroid and something else "Is that ok?"

What kind of question is that? Is that ok?? NO. Well, yes, "do what you need to do" is what I say but what I think is OH MY GOSH HE'S GOING TO STICK A NEEDLE IN MY BELLY who wants that? So off the nurse goes and Dr Remzi starts pacing the room deep in thought. He's normally very chatty with me so I find this new behavior a little alarming. The nurses try and distract me with questions and comments about how I like my k-pouch. The other nurse returns with the syringes which I try not to look at.
Dr Remzi says "I'm going to have to hurt you darling"
*sigh* "how bad?"
"I'm not going to lie to you, its going to hurt a bit, hang on to Vicki"
Vicki obligingly offers me her hand and I take a deep breath.
I don't know how many times he had to stick the needle in all I know is that he injected me in various locations around my stoma and not only did the needle hurt but also whatever was in the syringes too. I was gasping and squeezing the life out of that poor nurses hand and Dr Remzi (who is so very kind) tried to distract me by asking questions
how is your husband? fine
what does he do? he's in school
what's he studying? computer science
kids? no
how are all your parents? good, my in-laws just moved to Texas
do they like it? yes they can golf year-round
Finally it was over and I just lay there panting.
Dr Remzi "I'm sorry dear"
Its ok, I know you wouldn't hurt me if you didn't have to.
A follow-up is set up for Oct 31 - please God, let everything be healed by then, I don't want to repeat that

So then I just cover my poor stoma with a piece of gauze and shuffle off to the Endoscopy clinic to have my scope with my GI. Then when I was changing the gauze fell off and I discovered that it was covered in blood which oddly enough made me feel better. What I guess I mean is that seeing that blood helped me think I'm not too big a pansy. Then thankfully I had about 45 minutes to calm down and reflect that none of my other scopes have been very painful and that after all it would be interesting. I also contented myself by watching and listening to other patients and found myself thanking God that I no longer have a rectum and therefore will never again fear a colonoscopy, rectal exam or enema. I truly never ever believed I'd be thankful to not have a rectum but there you go, God works in mysterious ways!

My DOCTOR came back and pushed me down the hall towards the scoping room. I twisted around on my chariot to stare at him. "I've never been pushed by a doctor before!" I exclaimed.
Dr Shen laughes "Its good exercise"
"Wow I feel really special"
He laughed again and then we met up with the nurse who was no less shocked than I (I could tell by the incredulous look on her face).
So we get into the room.
Have a driver? No
No sedation then? Uh, I was under the impression I wouldn't need any (slightly disconcerted)
Well, some people can't handle it, I tend to humor my patients
Ah. Starting to wish I brought a driver.
So he starts to insert the scope. Its funny, I intubate 4 times a day every day but having that scope go in was something else. Probably because he's a little less gentle then me. Well it wasn't pleasant, then came the air. Geez I feel like a balloon. Remember those little animals in "Shrek" that they blow up into balloons? That was me. And I'm once again grunting and panting but of course completely riveted by watching my innards on on the big screen in HIGH DEFINITION. How cool is that?

The doctor is thrilled and even my untrained eye can tell that my pouch is disease free! Hooray! A disease-free pouch is what I've been praying for. Thanks God! We inspect the valve and then the terminal ileum (which means the last bit of small intestine that has not be transformed into a pouch). Everything is clean. "Now we take some biopsies" says Dr Shen
Cool, never bothered me before.....
"Open" says Dr Shen and we watch on TV and I see this little pincher pop out and plunge into my pouch HUH (I think I felt that)
"Close" then the little pincher yanks out a bit of intestine and pops back into its home ACK! I DID feel that! And I must have flinched because the nurse said "you felt that didn't you?"
"yes!"
"Open" out comes the pincher
"Close" out comes a piece of my intestine
ACK that was worse than last time! It literally felt like someone pinched my intestine. Can't explain it better than that
"OK, two more"
"open" I'm not watching anymore
"close" *gasp*
"open" Ok this isn't fun anymore
"close" thank God
"Ok we're done, scope out, you did great boss! But, if its too much, next time, bring a driver"
The thought occurred to me! But now I'm feeling better as he not only removed the scope but the majority of the air in my pouch too. And after all, it was relatively short-lived the bonus being I was alert enough to watch and ask question.

The long and the short of that visit is that my pouch is pristine - NO PILLS and NO DISEASE - Yea God! He wants me to continue on 6mp pretty much indefinitely. We want to keep the disease at bay and he doesn't want to risk a flare. I agree. When I decided I wanted to get the Kock pouch despite having crohns disease I knew I was signing up for long-term med use. But one med isn't bad and I don't have any side-effects so.

It was kinda a rough day. And I was so exhausted when I came home I went to bed before 9pm. Then I woke up cheery and well-rested and went to work! See what I mean about the surreal life?

Pills, Pouches and Problems - Oh my

2007-08-29T21:42:00.000-04:00

Well I've started my week with a nice little conundrum. I was on my k-pouch webboard reading a post by a woman who had a couple of pills pop out of her stoma several hours after intubating. Firstly this is an issue because the kock pouch is a continent pouch which means its not good when stuff comes out when there is no catheter in the pouch (although we later determined that the pill probably was pulled into the valve by the cath and then just worked its way to the surface). Then 2 days later another one came out and then a few days after that, another one! Well this posting prompted a lot of speculation on what sort of pill it was and why it was coming out now. This lady said that she very rarely takes pills all her vitamins and calcium pills are chewable because pills don't dissolve well in the pouch.

Well this is news to me! Pills don't dissolve in the pouch?? Oh no and they can't exit because they won't fit through the catheter. And this of course prompted a couple of stories by other k-pouchers who were in the hospital when other people actually had to be opened up again and all these undigested pills scooped out of their pouches. One lady who takes a time-release medication for a very serious condition actually ended up overdosing because the pills all hung out in her pouch and released the medication at once. It made her very sick.

I am 3 1/2 months now with my k-pouch and how many pills have I taken? I started to count, well I've been on 6mp since June (thats 1 every day 2 months = 60) then I started my multivitamin and calcium supplement about 3 weeks ago (thats 2 every day = 40) oh and I take tylenol fairly frequently, probably 4-6 a week since I got off.... OH WAIT I took about 60 pain pills in my first month post-op!!!!

So now, as you can imagine, I'm freaking out. Geez I could have an intestinal pharmacy going on! So I do the only sensible thing I can and that is STOP taking any more pills (except 6mp) Thankfully I have a scope in 2 weeks so whatever is in there we’ll be able to get out quickly. So I email my GI asking about the whole pouch-pill-problem. To which he responds almost immediately (he's a great doctor) and here's what he says:

Hi, Katie, Yes, we do have patients with pill stuck there. There is a pt, I removed 224 tablets from the K pouch with endoscopy last year. Yes when we do the scope, if there are pills stuck, will remove them.

I'm not sure what my first thought was upon reading this email. Surely I never doubted that if there were pills in my pouch he would take them out. Relief of course in discovering that they can be removed via the stoma and I wouldn't need surgery if I do indeed have pills in my pouch. But what almost made me laugh out loud is that fact that it sounds as though he’s somewhat amused by the thought. Now I’m friends with this doctor (as good friends as patient/doctor can be) and I like him very much. I feel I know him and his personality pretty well so I’m not insulted or scared by the fact that he seems to find the situation funny in fact it does something to elevate my fears because if he were truly concerned he would’ve said so at once. However I’m still a little anxious because of the 6mp and wondering if there is a liquid form available or if I should start crushing my pills so I emailed him back my concerns. He replied again almost immediately (did I mention he’s a great doctor?)

Nope, Katie, most pills (medicines including 6MP) are quickly dissolved in upper small bowel. Only these dietary supplements often gave us trouble.

Now here it is about 24 hours later and I’m feeling better about it because it doesn’t seem likely that there will be many (if any) pills in my pouch because I haven’t taken a lot of supplements and hopefully they really are digested but I still can’t help pondering it all in my brain. And God has gifted me with a very great imagination that I sometimes wished I could put a bit of a blanket over.

And so this creates a small amount of trepidation for me and my up and coming scope. Will there be any pills in my pouch? If so, how many? How long will it take to get them out because it’s going to have to be one at a time if he’s taking them out through my stoma. And I can just envision myself on the gurney looking up into the TV monitor and watching as the Dr starts fishing them out. And I’m gonna be full of air and groaning because of it and the nurse will be saying “ok you’re doing great, breathe in… breathe out….” And I’ll be gripping the handrails and the Dr will be saying “65…66….67….68…. wow there are quite a few in here…..”

Good Grief. Imagination in overdrive!!!!!!!!!!!!!!!

3 months

2007-08-11T21:23:00.000-04:00

My k-pouch is officially 3 months old today! Hooray! Feza and I are doing great and I love having him in my life. Yes my stoma has a name and its a "he". You can call me strange but only because you probably don't know anyone else with a stoma. But, in the world of ostomies stoma naming is incredibly common, probably 80% of ostomates do it. Its a world apart from you, I know. If you'd like to sneak a peak into a day in the life of an ostomate than I encourage you to read some posts on this forum from the united ostomy association or how about this one on the j-pouch group

I know you've probably heard me say it a million times but for me it isn't old yet I'M INTUBATING 4 TIMES A DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!! That's the coolest thing in the whole world. Sure, you'll hear me grumble about Feza occasionally, its in the nature of a stoma to be troublesome and if he's anything like his namesake than he's got quite a sense of humor too. But really, he's a blessing and I'm so grateful to have him.

I am also 12 weeks post-op now and really feeling quite well. I still have a day or two here and there where I don't feel well, but I'd say about 85% of the time I feel great. It's nice to feel really healthy and well again too! I have most of my energy back now, though I haven't started exercising again (I used to walk 2 miles 4-5 days a week) I'm sure I'll start again soon once the weather lets up a bit.

In the interest of full disclosure I'll have to admit a couple of things that aren't going so rosy. #1 is I'm having some separation between my stoma and my skin, a kind of ravine (if you will) between my stoma and the rest of my stomach. The actual term is mucocutaneous separation. Well, about a month ago I went and saw the ET nurse (enterostomal - means special nurse trained in ostomies) and she said that I need to pack it with a special powder every day and if it gets worse I gotta see the doctor. Well, it hasn't gotten better and I really can't tell if its gotten worse or not. Some days I think yes and other days I think no. Whats a girl to do? I don't wanna make another trip to Cleveland just to have the Doc look at it and say "keep packing it with powder and if it gets worse call my office" No thanks. Its one thing to go to the nurse at CC and its another thing to go see the doctor. This is not a fear issue, please don't accuse me of that! This is a time issue. When I went to see the nurse I was at the clinic less than an hour - that's practically unheard of! But when you go to see the Doc, well, lets just say that your afternoon is shot. And if you need to go, well its worth it, but if not, well....... I'm just not convinced I need to go. And though I used to be the kind of person who would put off going to the doctor, I'm not that way anymore and I'll be on the look-out.

Well #2 problem. *sigh* Its my OTHER incision. My stomach has healed nicely, lovely really and my jp drain wound looks much better even at 12 weeks than I thought would ever be possible. But after sitting for 6-8 hours I'm still a bit sore and there's draining. Still. I was told it could go on "for a while" and its beginning to bother me. These types of wounds can be notorious for taking their time in healing and especially since I thought the draining would all be over after this surgery I find it very discouraging. My surgeon says its normal and I believe him, I'm just tired of it.

Oh and I just found out I'm going to have my pouch scoped Sept 12th. I called to try and schedule it for December and it wasn't ordered so I emailed Dr Shen to ask him if he still wanted me to have it. He said 'YES! Please call my office again tomorrow' But I didn't get the chance because they called me and they said OK you're all set for Sept 12 at 11am. I just said OK. But when I saw him in June he said 3-6 months and I said I was leaning toward 6 but apparently he was leaning toward 3. Oh well. It'll be interesting to watch anyways..... maybe I'll have another funny stoma-spewing poo story to tell (if you don't know what I'm talking about, check out my Adventures in Gastroenterology post from March).

So here I sit with my 3 month-old pouch, enjoying feeling GOOD and happy that it appears that my health problems are behind me! No matter what though, to God be the glory.

The Throne deposed!

2007-07-30T19:11:00.000-04:00

This the end of the reign of the toilet in my life.

It sounds silly, I know. But thats only because you don't know what its like to have your whole life revolve around your access to the bathroom. Admittedly, my lot has been easier than those who suffer with ulcerative colitis or severe chrons disease. 20 trips to the bathroom a day is common if you're in a flare and some people go even more than that. But even 8-9 times a day sometimes urgently and getting up at least once every single night is rough too. I got so used to it sometimes I don't think I even really woke up. The bathroom was such a huge part of my life that toilet dreams were a weekly (sometimes nightly) occurrence. Dreams? Yeah. Of course plenty of the standard no tp, no clean seat, no privacy etc etc But some really crazy ones too lets see like.....

an outhouse guarded by wolves
a bunch of stalls at the top of a stadium with no doors
and my personal favorite - a toilet museum with no public restrooms

You don't forget dreams like those!
I stopped having them though - no more toilet nightmares, no more running to the bathroom right after a meal, no more fear of eating on a road-trip, no more hunting for a bathroom in stores, restaurants, malls, parks.

A couple of years ago I was out to lunch with some friends when one of them asked "where's the bathroom at I wonder?" and my other friend said "ask Katie, she always knows where the bathroom is." It's true, like I had an internal compass that pointed me in the right direction.

And the crazy thing is that this hold, this magnetic attraction that has kept such a hold of me almost my entire life I didn't even realize when that hold began to loosen. That is, until just a few days ago. I was on my way home from worship practice at church and just thinking about how things were going with my k-pouch and it hit me like a ton of bricks. I only intubated 4 times the day before. 7am, 3pm, 7pm and 10:30pm, that the other times I just went into the bathroom to pee. That knowledge began to settle down into my brain and well, I almost started to cry. Maybe that sounds silly to you, but then you don't know what its like to be a prisoner of the toilet and you can THANK GOD for that.

I'm released now. I love my k-pouch. Ask me if I care that I stick a tube in my belly -- I don't!!! I'm finally free. The throne is deposed and its control is broken.

Thank you, thank you, God (and thank you Dr Remzi too)

Back to normal

2007-07-12T17:49:00.000-04:00

I guess that's what I'll call this, my new "normal".
Once again I join the ranks of people who only see the doctor once or twice a year. I'm healthy enough to do just about everything that I used to, just still waiting for the stamina and energy to come all the way back. Its exciting for me and its strange all at the same time.

Strange because my new pouch requires a lot of micro-management for the time being. This next whole year will be an adjustment period as I try to work out my new "normal". My eating habits have changed drastically as have my bathroom habits. I'm still trying to figure out what foods I can eat and in what quantities. Fruits and veggies are still really low on the list because I just can't tolerate them. And right now I go to the bathroom because of what time is it, tell me if that's not strange. I'm still trying to get the hang of getting the tube in fairly quickly. Most of the time now, I can get it in in under 5 minutes and I guess that's good considering I've only been doing it 3 weeks. But since I'm a baby k-poucher little things still freak me out, a little blood here, and odd pain in my stomach.... these things will iron themselves out eventually.

I still haven't intubated at work, something I will be doing for the first time next week. I'm nervous and concerned and when I'm nervous and concerned my stomach muscles tighten and that makes it impossible to get the tube in. The longer it takes to get the tube in the more concerned I get. And the biggest tips for getting the tube in when it's difficult?? #1 Relax. Sure, I'll do that. #2 Put the cath in the freezer for 30 minutes. At work? No. #3 Lie on the floor while inserting the cath. Once again, at work? NO. I wouldn't lie down on my own bathroom floor. Back to #1 I guess.
If you think of me next week, pray that I can get the cath in easily.

What is my new normal? Well now it will include having a cath, bulb syringe and lubricant with me at all times. I'll keep a set in my car, in my purse, at home and at work. If I were to get food poisoning or some other emergency I'd have to intubate immediately and you can't exactly just stick a straw into your belly. I'm also considering getting one of those medical bracelets that alerts medical professionals about a severe allergy or medical condition because the type of internal pouch I have now is so rare that most people have never even heard of them. I need them to know who to contact about it if I'm unconscious.

And what does normal mean anyways?? The truth is I'll never be normal. No, I won't. I'm forever changed by the things I've been through, especially in the last 2 years. I'm not trying to make myself out to be something special or anything but the truth of the matter is I have NO idea what it is to walk through life with the most pressing concern at my next doctor's visit being my cholesterol. I don't know what it's like to have the bathroom be an afterthought because as long as I can remember access to the bathroom has always been my top priority.

I think I have an idea of what it must be like to be a survivor of some horrible accident. What I'm saying is, I've been through this huge and crazy ordeal and now its "over" (I hope) now I'm home and back at work and supposed to go back to doing everything I did before. The only thing is I don't feel the same. I feel shell-shocked I suppose. Like I just landed back on earth from some place else and no one around me has any idea what I've been through and no one is like me.

People say things to me like "don't obsess about my health conditions" or "don't let this problem define who you are". Are you kidding??? It's not just this last surgery that has shaped my personality and feelings, thoughts and actions its all the crap I went through on my way to having surgery. Like what? Well, in the last year and a half I've spent 21 days admitted to the hospital, that includes 3 surgeries, 4 outpatient procedures and 2 admissions through the ER. Twice while in the hospital I stopped breathing and had to be revived. I've had 1 lower GI x-ray series with barium, 2 CAT scans, 3 intestinal scopes (2 without sedation). I've had my stoma irrigated, I've had foley catheters and urinary stents and abdominal drains. I've had 3 five hour sessions of the drug Remicade, several dozen IVs and more blood draws than I can count. You can't go through all that and not come out different on the other side.

I can't pretend that all this didn't happen to me and I can't bury the past it has made me what I am. Right now though I kinda feel like a teenager trying to figure out who that is. I guess its kinda like coming out of the Army or prison. You've spent so much time just trying to survive its hard to go back to normal.

I guess I just need some time.

Post-OP

2007-06-22T15:35:00.000-04:00

Well my post-op visit at Cleveland Clinic went great. The ET nurse taught me how to do the intubating thing and I did it twice with her there. Its kinda nerve-wracking to try and stick that tube in but she said I was doing a great job. Both my doctors were very pleased with how well I'm doing and said I don't have to go back for 6 months!!! I can hardly believe it, but of course I'm thrilled. So I'll be going back in December to see both my surgeon and my GI and I'll also be having a scope of my new k-pouch. Because I have crohns disease it is important to monitor the pouch to see if there are any ulcers forming. I will continue on 6mp (my immunosuppressive) at least until December. If my pouch is clean there is the possibility that they will discontinue that drug as well. I'm over the moon!!

So far, the intubating thing is going OK. I'm on a schedule of intubating every 2-3 hours for one week, then 3-4 hours for two weeks then 4-5 hours for one week. After that I'll probably only need to intubate every 5 hours. Most people with a k-pouch only intubate 4 times a day and I'm totally excited about that prospect. I've got a solid month of hard work in front of me trying to "grow" my pouch. I have to intubate at night too which makes sleeping kinda difficult and I'm a little grumpy....

Intubating is really kinda weird. My catheter is clear and has a diameter smaller than a pea. One end is open and the other end is "bullet nosed" with two holes along the sides. That's the end that I stick into my stoma and stuff comes out the open end. Putting the tube in can be a little tricky though. There is a valve which goes through the muscle wall of the abdomen and ends in a stoma. The valve shuts to prevent any kind of gas or stool from coming out so I am continent. So in putting the tube in I have to apply slight pressure and just kinda wait. I have to make sure my stomach muscles are relaxed or there's no way the tube will go in, take deep and slow breaths and slowly turn the catheter keeping the slight pressure until POP I feel the cath slide past the valve and into the pouch. Then I still have to work against the muscles and the intestine to get the tube in because it will naturally push the tubing out. Once the tube is in stuff starts to flow out.

Sometimes I sit on the toilet and point the cath into the bowl and sometimes I stand and point it into a little container used especially for this. If the stool is thick and won't flow through the cath then I have to squirt some water into me to thin it out. I have to use a water-soluble lubricant to help the cath go in. My ET nurse said lots of people just buy KY because its readily available and works great. Since I intubate several times a day I guess I'll have to buy it in bulk - imagine the check-out person's face!

I will have to keep a cath, lubricant and bulb syringe on me at all times so I can intubate if I need to. When my pouch gets full I get a sensation of fullness, only lower down than my stomach. Also, my k-pouch seems to rest on my bladder so that causes a little discomfort sometimes, but I can live with it. When I'm done intubating I just cover my stoma with a little patch and off I go! No bag, no tube no nothing - I'm FREE. I'm very very excited and ready for life to normalize.

This is my new stoma, his name is Feza and I'm very happy to have him! You can see my midline incision is healing well (it's 7 1/2 inches long) and that spot on my left side is where I had an abdominal drain after surgery, it's almost healed too. Tragically, my belly button was demolished in this surgery but I guess it's a small price to pay. I'm really happy with how well everything is going, and ready to get on with my life!

I have a tube in my belly

2007-06-06T09:50:00.000-04:00

I do. I've had it in for almost 4 weeks now and I'm getting sick of it.
True, I knew I would have it, but I did think it was just going to be for 4 weeks, instead its going to be 5 1/2. A week and a half more may not seem like a long time to you, but believe me, when you have a tube sticking out of your belly every day you're very aware of it.

The tubing connects to a bag which collects my waste. It is NOT like a regular ileostomy. With an ileostomy the bag is attached to your side. This bag is at the end of a 3 foot tube and I drag it around the house with me. When I want to go on an outing I attach the catheter to a little leg bag that I can strap around my leg. The reason I have all this is so that my internal pouch (my new kock pouch) can heal from surgery before we ask it to grow and hold waste on a regular basis.

In two weeks I am going back up to Cleveland for my post-op visit with my surgeon. I'm very excited for this visit #1 because they will remove the constant drain and teach me how to intubate on my own. No more dragging a bag around. I will cover my stoma with a little patch and only put the tube in every few hours when I need to empty. Piece of cake! #2 Reason for being excited is I have reason to believe that after this visit I may have one more check up in a couple of months (maybe) but after that will probably only have yearly visits with my surgeon!

I love my surgeon, he's wonderful. Couldn't have a better surgeon, BUT, I'm ready to be done with my monthly visits to the Cleveland Clinic. Once this is over I can move on with my life! That's totally exciting for me. No more wondering what step to take next, what medications I'll be on and for how long, what my next exam will show, what the surgeon says can be done. After all this time it'll be just a yearly scoping of my pouch "Hey that pouch looks great - see you next year!" Could life be that good again??

Recovering

2007-05-26T09:08:00.000-04:00

Its been just over 2 weeks since my surgery and I'm doing fairly well. Also I was discharged from the hospital one week ago today. Its so nice to be home!

I had my first outing since my surgery yesterday. I managed a trip to the chiropractor's office (those OR tables really mess you up) and mom and I went to Target too. I walk like I'm 80 years old so its a bit of a struggle getting around but it was nice to go outside and breathe some fresh air.

I'm still in quite a bit of pain and struggle with simple things like sitting down and getting up. Every day I am getting better and stronger though so I'm fairly happy with my progress. Eating is still a bit of a problem. All my food has to go through the catheter in my stomach which means it has to be chewed excessively. Anything that is thickening doesn't make it through the tube very well. I have to drink a lot of water and grape juice (helps thin stuff out) and I've never been the biggest fan of grape juice. Maybe I'll have to try some cran-grape. I still don't have very much of an appetite yet and nothing really appeals to me. These things just take time I think but my mom is concerned that I'm losing too much weight, I guess I'll have to up my pudding consumption!

I'm an official Kock poucher!!!!

2007-05-20T10:42:00.000-04:00

Well I'm home - finally.
9 days in the hospital, not fun at all and I'm really really glad to be home.

Surgery itself went really well, lasted 5 hours and my surgeon was extremely happy with how everything went. He said I had very few adhesions (scar tissue) which made the work much easier and I think he found less disease than he thought he would. I have my Kock pouch.

I did have unfortunately some terrible experiences in the hospital. I was woken up in the PACU (post anesthesia care unit) around noon because I had a reaction to some painkillers I was given immediately post-op. I stopped breathing - yes, it happened. Because of that I was given a medication to wake me up and keep me awake and also I was not allowed any pain medication for over a hour. This was an excruciating experience for me. Under normal circumstances I would not even wake up in the PACU and would sleep most of the day of my surgery. Because of the drugs though I was wide awake an fully aware of everything that was happening to me. The nurse who attended me was very unkind and unsympathetic. I will spare you the details except to say that I cried the entire time I was in there, It was a truly horrible experience.

Eventually I was allowed pain killers and given access to my pain pump but after being off pain killers it takes a while for them to bring the pain under control, it was probably 5pm before I was actually comfortable again.

I woke up with a catheter in my bladder and a stent (to prevent the formation of scar tissue), with an abdominal drain (to drain fluid out of the abdominal cavity and prevent sepsis), my catheter for my kock pouch and my IV.

The next couple of days in the hospital went well. I managed to walk to the bathroom get a little sponge bath, sit up in a chair etc etc. On Monday they took away my pain pump and started me on percocet. This was a mistake as it was inadequate pain control. With the pain pump I could dose myself every 6 minutes which I didn't usually need to unless I was getting up or moving around etc. With the percocet I was given pills every 4 hours and oxycondon in between time for "breakthrough" pain but it just couldn't bring anything under control. Tuesday and Wednesday were both horrible days for me. Between the pain and nausea and my small intestine still not being "awake" (meaning functioning) I was absolutely miserable. I was able to speak to my doctor about the inadequate pain control and they agreed to put me on Morphine since I was still not eating and I was also sent for a GI x-ray with contrast so they could see how the pouch was doing.

Also on Wednesday my IV infiltrated and a new one had to be started. They brought in a special nurse to do it who tried 3 times with no luck. Then they called in the IV SWAT team (not lying) and they did manage to get it started. Had my abdominal drain removed on Wednesday. It was sutured to my skin so they cut those and then pulled it out. That hurt more than I can put into words. I was glad shon was there to hold my hand as I believe I almost crushed his fingers and glad my mom was not there to hear me.

Thursday was my turn-around day. I actually got some sleep wednesday night (which let me tell you, in a hospital is an amazing feet) I started taking longer walks down the hallway. By Thursday night I was actually hungry - I went 7 days with no food. Friday I was allowed soft foods and was told if the pouch kept functioning and I had no nausea I could go home on Saturday.

No more nausea and lots of walking and sitting up and I got sent home yesterday and arrived around 3pm. I still have my constant drain in my k-pouch and that will stay in for the next 4 weeks until I go see my surgeon. I've been taught how to take care of it though and I feel fairly comfortable with the whole thing.

This was probably the worst hospital experience that I've ever had, mostly due to inadequate pain control. The care I received over-all was quite good. I had some excellent nurses and some that were just so-so. I can't thank God enough for allowing my mom to be here to help take care of me. Besides keeping me company and helping spare Shon some of the burden its just nice to have my mom here. Shon has been truly amazing. I have been blessed beyond measure to have him as my husband. I sat trembling in the bathroom naked, cold, in pain and tired day after day as he patiently and tenderly got me cleaned up. Not grossed out by dried blood and mucus, by drains and poop and my inability to do anything for myself. He was always by my side when he could be holding my hand and encouraging me. Telling me how proud he was of me. Thank you God, for giving me Shon.

And thank you all for your prayers. As hard as this experience has been I felt God's presence and encouragement and I know how much your prayers helped my family as well.

I'm Home.

K Day

2007-05-10T12:42:00.000-04:00

Surgery is at 7am tomorrow and I have to be at the Cleveland Clinic at 5:30am *eek* I'm the first patient of the day for both surgeons so that's good. Please pray that they get my IV started right away.
I'm on clear liquids from 4pm on today and nothing at all after midnight.

I gotta go finish packing.

Pre-Op Day

2007-05-06T09:10:00.000-04:00

Tomorrow is my big day of pre-op work-up at the Cleveland Clinic.
My schedule?
9:45 Lab
10:15 Internal Medicine nurse
10:30 Internal Medicine Doctor
12:10 Pace Clinic Preoperative Clearance
1:00 Pace Clinic Admitting Interview
2:00 Dr Remzi - Colorectal surgery
2:40 Stoma Therapy
3:00 Nurse Patient Education

The lab work will be fun, they'll draw something like 4 vials of blood - here's hoping they get a good vein on the first stick. The internal medicine nurse and doctor is basically to make sure I'm healthy enough for major surgery. Funny huh? At some point, you have to be sick enough and yet on the other hand.... The Pace clinic stuff is to get all the paperwork out of the way. Then I go see my surgeon then I have to meet with the stoma nurses as I'll be getting a new stoma so they'll talk with me about placement and how to care for it. The last bit is all the rundown you get before surgery, nothing to eat or drink after midnight (thankfully because I'm already without a colon I won't have any nasty bowel prep to drink), no jewelry, makeup, hairspray, deodorant (Yuck) basically, come as God made you cause they can't have it on the OR.

FRIDAY is the day.

After waiting for so long its hard to believe its almost here. I hope these last few days go rather quickly because I'm just ready to get it over with. It is true what they say that waiting is the hardest part. The imagination can be cruel.

The Cleveland Clinic surgical center is like an airport.
Not kidding. The family waiting area is huge and it has big flat screen monitors on the walls. Each family gets a little beeper-type device. Like they give you at restaurants to let you know your table is ready. The family gets paged when there is a change in your status. And every patient has a code that the family can look up on the monitors and it tells them whats happening. For instance it can say something like HK102CR (Harsh, Kathryn 102 ColoRectal) and then my location Preop, in transit, Surgery, Recovery.... Delayed - see what I mean about the airport??

Once you get checked in and they call you to the pre-op area you head into another building and that's where the fun begins. Once I'm gowned and prepped for surgery my family can come back and stay with me until they take me away. We usually just look at each other and pray. What is there to talk about at that point?

Then they come get me and I get wheeled into yet another building. And at this point I don't have my glasses so there isn't much to tell you cause I can't see it very well! I know there is at least 30 operating rooms and they park me outside of mine until they're ready to bring me in. The anesthesiologist will come out and talk to me and then my surgeon will come say hi and "Don't worry, I'll take good care of you"

Lets just get it over with.

What are you so scared of?

2007-04-24T18:57:00.000-04:00

A reasonable question.

Not surgery itself. No, I'm not - really!
I've had too much surgery to be easily intimidated and having the best colorectal surgeon in the world certainly eases many concerns.

Yes, I'll get a little antsy when they wheel me into the OR. There's no place in the world quite like an operating room. Its FREEZING in there, like the inside of a refrigerater. Everyone is covered in masks and hats and gloves and there are a lot of lights and machines. Someone is invariably laying out sanitized tools onto a table. Then they help me scootch onto the operating table, its narrow and hard and I lay my head on a folded up towel and when they start to untie my gown and place electrodes all over my body it can be a little unnerving because it hits then, they're going to take out a knife and gut me like a fish.

I take a deep breath
A song from my childhood camp comes to mind "How can I fear? Jesus is near. He ever watches over me. Worries all cease, He gives me peace, how can I fear, with Jesus."

They start the drugs and lights out, so thats not the really scary part.

Its what I'll wake up with that I'm really scared about. They're going to give me a Kock pouch - probably. Hopefully. But nothing in the OR is 100% sure until they open you up and take a look. How many adhesions do I have? (adhesions are scar tissue build-up from previous surgeries) How much disease is in my pouch? How does the rest of my small intestine look? How much trouble will they have removing my j-pouch? What if they get in there and decide they can't do the Kock pouch and they have already removed my sphincter muscles and I have no alternantive but permanent end ileostomy? I don't want that.

That is what really terrifies me. And I don't want to sound rude but please don't say something like "God will never give you more than you can handle" - I think that's nonsense. What would I need God for if I could handle stuff on my own?? Don't say "God works out everything for our good." Actually, I think God works everything out according to HIS perfect will, which may involve my personal suffering. Please don't tell me "God will take care of you" because if you read my post "Not a tame Lion" then you know that I believe God plans specific events into our lives - even ones we consider bad. Not MY idea of being "taken care of" but I admit that His ultimate plan is worth more than my comfort so I'll do my best to live with that.

So What can you say to me??
I'll be praying for you!!! Praying that God will give you GRACE, STRENGTH, and COURAGE to face WHATEVER is ahead of you. No matter what I'm here for you and I love you!

Thats really what I need more than anything else -- your prayers.
Yes, PLEASE pray the surgery goes well, that I get my Kock pouch and have a quick recovery but also please, please pray the above because some days grace, strength and courage are in short supply.

3 weeks! And the countdown continues...

2007-04-19T20:08:00.000-04:00

Well here we are just 3 weeks away now and many of you have been asking me how I feel about the surgery and if I'm nervous or scared. That's a more complicated question then you might think. I am scared, but I wish it was tomorrow. Waiting is very difficult not only because it gives me time to think over everything I can possibly think of but also because my symptoms are getting worse. I'm just ready to get it over with. I really try not to let my mind dwell on what is ahead, it is easier for me to get through the things I have to get through if I don't sit there and let my imagination go crazy beforehand. And I'm starting to have dreams about it and unfortunately I've been in the OR a few too many times. My dreams are incredibly realistic and terrifying. Part of the problem is that I know all too well what I've got to face. Sometimes ignorance is bliss.

Much of my trepidation lies with the actual surgery and the complications associated with that, but the rest of it is focused upon the remaining days I'll be in the hospital after surgery. I'll tell you about that part now.

First off, I have terrible veins. What does that mean? It means that on any given day getting blood drawn or getting an IV started can be torture. A lot of people with a chronic illness, who spend a lot of time in the hospital get bad veins, it comes from having needles poked in them too often. My veins are very small, they roll and hide and on the worst days it doesn't even look like I have veins. In practical terms it means that lab workers and nurses and even anesthesiologists put on the tourniquet and look and slap and look and slap and look and change arms and repeat. Then they stick me and about 90% of the time the vein disappears and that's when the digging begins. On a good day, they can get me in one stick. On my worst day it took 4 tries to get one started. And once they've tried 2-3 times and don't get it, even the nurses start to panic. It can be quite painful and it is incredibly stressful. I think of myself as a fairly brave girl. I have had to endure well more than my fair share of painful procedures but there isn't much that will send the tears streaming much quicker than me realizing that the 2nd stick didn't work.

What else scares me? Post surgical pain. This will be my 4th major abdominal surgery so I know what I can expect. I'll have good pain management, and that really is what it is: "management" because with a 6" incision running down your belly you can forget tying your shoes, bending, sitting etc without discomfort. But the REAL pain comes when you laugh, cough or sneeze. These are very violent actions and your abdominal muscles are involved a lot more than you might think.

Lastly, some final snippets of hospital life

The Good:
Room Service
No work
Can nap as much as you want
Can watch TV all day long
Morphine

The Bad:
Jello
Snoring roommates
Hospital gowns
Hourly vitals checks
Beeping IV poles (especially at 2am)
General hospital noisiness
5am 1st rounds
7am 2nd rounds
Circulation stockings
Incentive Spirometer a device they make patients blow into it 10 times an hour to fully inflate their lungs and help prevent pneumonia
Constant parade of nurses aides, nurses, residents, fellows and doctors inspecting you and your parts, incisions, bandages and drains

The UGLY:
Catheters and drains
Heparin shots an anti-coagulant injected under the skin to help prevent blood clots , it burns like crazy and it leaves big bruises, its done every 8 hours.
3am blood draws
IVs just remember that I have terrible veins...
Infiltrating IVs this is when the vein basically breaks and the medicine starts going into the surrounding muscle and tissue and means you have to have a new IV started.
NG tube a tube that is sometimes used after major abdominal surgery it goes in through the nose, down the esophagus and into the stomach to help keep it empty.

Now you know what I'm up against. I appreciate your prayers!

The long-awaited date

2007-04-11T20:20:00.000-04:00

May 11, 2007
Thats it. The day I'm having surgery.... again.
I've been waiting for a while now to know for sure because there were some schedualing difficulties. But I've been given the official word now, so there you go.

History: My surgeon has been telling me since November that it was time to stop trying to fix the fistula and face the facts that it cannot be fixed and I need to move on with my life. He did want me to get a 2nd opinion from the Chief of colorectal surgery, Dr Fazio, just so we would both feel that we gave this 100% and not have any questions. So in January I had a consult with Dr Fazio who agreed with Dr Remzi (I expected nothing less) and I eventually came to agree with them both. In February we talked about what we could to to alleviate my present distress, in March we agreed and got to work setting a surgery date and in April I got my date set.

My options were presented as follows:
1 - Leave me as I am - Not acceptable to me as I am having horrible draining 24/7
2 - Redo j-pouch - Not presented as a good option with likelihood of poor pouch function, chance of fistula recurrence and likelihood that the crohns disease would spread to my new pouch.
3 - Permanent end ileostomy - presented as BEST option because conserves the most bowel. However this option is very unattractive to me as I hate the appliance I have to wear all the time, and the thought of having it for the rest of my life is very difficult.
4 - Kock pouch - called a "continent ileostomy" kinda a hybrid of ileostomy and j-pouch, it is an internal pouch made from the small intestine and I would still have a stoma, however there is no external appliance. The pouch is emptied with a catheter. Check out my posting on the K-pouch for all the details. The pro of this being that the pouch is internal and there is no need for an appliance, I would just wear a patch to cover the stoma. The cons are #1 because it is made from my small intestine there is a chance that the crohns disease could spread to my new pouch. #2 The surgery is difficult and has a very high complication and re-operation rate.

After much prayerful consideration and talking with my family and doing a LOT of thinking I have opted to go with the kock pouch. It will bring me the closest to "normal" that I can ever be again since living with the fistula is out of the question. I will be having my j-pouch removed along with the sphincter muscles and remaining rectal cuff and my rear-end will be sewn up tight. As you can imagine this was a very difficult decision for me to make as there is no going back and it will be an emotionally and physically painful experience.

As I mentioned above the kock pouch is a very difficult procedure with a high complication rate such that there are only about a dozen surgeons in the US that do them. My surgeon, Dr Remzi is one of them and the chief of colorectal surgery Dr Fazio is famous for his skill at doing them (has done over 500). Part of the problem in getting my surgery scheduled was that they will be doing this part of the surgery together and its difficult to get two very busy surgeons together at the same time. I feel confident that they will do a fantastic job. As you have no doubt gathered, The k-pouch is a very big surgery and also having my j-pouch removed is also a major procedure so you can imagine that I am nervous. As much surgery as I've had its still not easy to be wheeled into the OR.

Here's the nitty-gritty:
Surgery is expected to last 4-6 hours
I'll have a 5-8 inch incision.
I will be hospitalized 5-7 days
My recovery period is 6-8 weeks

My diet will be severely limited for several months and there will be a huge period of adjustment as I get accustomed to my new alternative plumbing situation. Also, having all the sphincter muscles removed and that area sewn up will be painful for quite some time. I would very much appreciate your prayers as I try and prepare myself physically, emotionally and mentally for the challenges ahead.

My mom is coming home from Thailand to be with me and help Shon take care of me, and I would appreciate your prayers for her too as the travel time is in the range of 36 hours.

What else can you pray for?
That the surgery will go well with no major complications
That I have a speedy recovery!
That my mom and I won't drive each other crazy :)
That I'll adjust to my new pouch well.
That God will provide for our needs while I'm out of work
That God will comfort my family and provide them with peace - especially Shon. As hard as it is for me to go through all this, I know it is harder on my family.

On a side note:
Last February I had surgery to repair the fistula and give me a "temporary" ileostomy. The day after surgery, after I had been out of bed a little while, I laid down to take a nap and shortly thereafter stopped breathing - I had a severe allergic reaction to some medication that I was on. Fortunately the nurse came in to check on me and noticed that I was unresponsive, she called a "code blue" and the crash team came in and revived me. I do not know how long I was unconscious. My family was forced out of the room, a policeman was stationed outside and a pastor was sent up to talk to them. Thankfully they were able to revive me without any of the serious or invasive measures such as intubating or paddles but I woke up with a dozen doctors and nurses working on me, with an oxygen mask on my face, and with monitors all over my body. It was a terrifying experience for both me and my family

They THINK they figured out what I'm allergic to, but I was on 5-6 different kinds of medication at the time and therefore I still have concerns about the accuracy of their determination. Because of this, one my fears about the upcoming surgery is actually how I'll do the day after . I'd appreciate your prayers.

Thank you all for your love and support!

K-pouch

2007-04-06T21:40:00.000-04:00

Its called Kock pouch - And yes, it is pronounced exactly the way it looks!
It was invented by a Swedish doctor named Nils Kock so of course its named in his honor. It's weird to think that something that is created entirely from the small intestine could be "invented" but there you go....

The Kock pouch is an internal pouch constructed from the small intestine which stores the waste products until the person is ready to irrigate, ie a thin tube is inserted into the stoma to drain the contents a few times a day.
A one-way nipple valve sitting flush with the skin, stops the stool from coming out at all other times. In this way a person avoids having to wear a bag and usually just has a just a piece of gauze or even a Band-Aid to protect the stoma during most of their daily activities.

People with a continent ileostomy usually only have to empty the pouch 4-5 times a day and not at all at night once the pouch is fully matured (grown to accommodate 500 - 1000 mL of fluid).

In the first 4 weeks following surgery I will have a constant drain left in the pouch. This will help me as I recover and allow the pouch time to heal. After the constant drain is taken out I will be on an intubating schedule where I will catheterize the pouch every 3 hours, then after a week or so every 4 hours, and so on and so forth until the pouch is mature.

Now for those of you who are not medical professionals - and in practical terms, what does all this mean?

#1 I'll never poop like a normal person again. I'm having all the sphincters and rectal cuff removed because of that nasty fistula that cannot be fixed and instead I'm being fitted with this internal pouch. As mentioned above, the way that waste exits the pouch is via a catheter. What is a catheter? Basically a long flexible tube that is inserted into the pouch and the waste is syphoned out. It does not hurt because the intestine does not have nerve endings. I've had a catheter shoved into my current stoma before and a scope and it did not hurt either time, just feels kinda funny.

#2 Everything that goes in my mouth must come out the tube which is not much bigger in diameter than a straw. I see the wheels turning. Here's where it may become a little "to much info" so feel free to skip ahead to the next paragraph! -- I don't have a colon so my waste is already pretty liquidy and there are MANY things I don't digest. If I don't chew it it doesn't change form and comes out just like it goes in: lettuce or other leafy greens, corn, nuts, seeds, fruit skins or membranes etc. so you can imagine that it could be problematic in getting it to come out through a long straw. Therefore, my diet will be very limited until I figure out how much trouble different foods cause me. I have to CHEW and CHEW and CHEW everything down to baby food consistency before swallowing or else I could have major difficulty in getting it to come back out. Dinnertime will become a marathon event.

So now maybe the question on your mind is "Doesn't it freak you out to think of sticking a catheter in your belly to 'go to the bathroom'?" Well, YES! Of course I'm a little freaked out about it. I'm human after all and this is a completely unnatural experience! But if there's one thing I've learned through all my medial problems is that things that are unnatural and bizarre can become commonplace when you do them often enough.

Maybe you're thinking "I could never do that!" But you're thinking about it like a person with a healthy colon. I haven't had a colon in 15 years - in fact, I cannot remember what it is like to go to the bathroom like a normal person. Also my options are extremely limited. It's not like I get to choose between being normal and having a k-pouch.

Am I intimidated? Yes. Am I going to let that stop me? NO. But if I obsess about it for a while and it takes me a half hour to eat a sandwich, I hope you will understand!

But you don't look sick

2007-03-26T14:39:00.000-04:00

I've heard it enough, and for those people who don't say it I can see it in your face.

Its a blessing though, really, to have a disease where the symptoms are so personal I can hide them from the world. Because with crohns disease unless your emaciated because you can't get the nutrition you need, really you look fine. Most people wouldn't notice that you visit the bathroom 8 + times a day. They don't see the blood in the toilet. Don't know how much everything you eat affects you. Don't know how many and what kind of medications you're on and the side effects you deal with. Don't know what its like to have constant perianal drainage. And I have an ileostomy now so my symptoms are minimized.

Unfortunately though looks don't change facts. And this fistula is like my achillies heel. It seems so ridiculous to me sometimes that something so small could cause such problems, could be so difficult to fix - and in my case, unfixable. One thing is for sure and that is I can't continue on indefintely like I have been. Its one thing to deal with the draining when you think its temporary and the doctors will be able to end it. But I saw my surgeon and he's said there is nothing more he can do for me and he even had me get a 2nd opinion for the chief of colorectal surgery who said the same thing. He said its time to accept that we cannot fix this and move on with my life. So I'm headed back for more major abdominal surgery in May to have my j-pouch removed.

But you don't look sick! --- I'll take that as a compliment.

Adventures in Gastroenterology

2007-03-20T21:56:00.000-04:00

You may be familiar with my adventures in colorectal surgery series, but this is an adventure that I had with my Gastro doc Dr Shen back in Nov 2006. It all started when I began to see blood coming out of my stoma. This was very unsettling for me as I'm sure you can imagine. So after watching this happen and getting some advice from my webboard at www.j-pouch.org I decided I had better notify my GI. I emailed my doctor and his response was to order me to come up to the clinic to have a scope done through my stoma. This scope is the same type device they use for colonoscopies it is a fiber-optic cable with a camera and light and they shoot you full of air to expand the intestine and see stuff. Now I had a scope done through my stoma before, it is not really painful, mostly uncomfortable because of all the air so I felt ok going up by myself. So I got checked in, had my backpack and walked back to my little pre-op area, I passed Dr Shen who was on the phone at the nurse’s station and he waved at me.
My nurse takes me to my little area and says "you don't need sedation right? Because it’s through the stoma?"
ME "right, no sedation"
There's 2 nurses, My nurse and this other nurse in training who walked up after this was stated and the N-I-T says "I'll get her IV started"
Nurse "No, she's getting scope through her stoma she doesn't need an IV"
So they close the curtain and I take of shirt and pants, just so poop doesn't get on my clothes and throw on a gown. Well I'm just tying the back and trying to shove my backpack under the gurney (in this area your stuff goes under the stretcher with you because you finish in a different place where you started).
Dr. Shen comes right outside my little area "I'm ready for my next patient. Is it Katie? She should be ready." Then to me, "Katie, are you ready?"
ME: "Yes almost, I'm just stowing my stuff. Am I gonna walk back?"
Dr Shen "No I'm going to push you!"
ME: "I'm really getting the red-carpet treatment today!"
He laughs and then he swings back the curtain and my nurse is there too with the N-I-T who says "Aren't we going to start an IV?"
to which all of us (Dr Shen, the nurse and me) say "NO"
So the nurse starts pushing me to the scoping room and Dr. Shen and I are chatting about the conference he was at and that N-I-T goes "shouldn't we start one though?"
Real Nurse "NO"
Nurse in training "Really? What if there's an emergency?"
Nurse: "NO"
ME: (giggling a little) "What kind of emergency?"
Nurse "We don't need an IV”
And at this point I'm totally rolling my eyes here. I don't think she would've been so eager to get her shot at starting one if she knew how bad of a stick I am :oP

So we get all situated in the scoping room and I ask Dr. Shen if he's going to look down towards the pouch as well as up since I think that’s where I saw the blood come from and once he confirms that I have LOOP ileo he says yes he will certainly do that.

Well he sticks the scope in and I'm totally digging this because it’s really cool to watch your insides on TV. But the amount of air is REALLY quickly making me incredibly uncomfortable and it is painful. Try to imagine the worst gas you've ever had then triple it. I'm starting to breathe harder and squeeze the bed rails.
So the Nurse comes over and she takes my hand and she's like "take deep breaths... that’s right, in through the nose..."
I feel like I'm giving birth. :oP
Dr. Shen: "I'm sorry, Katie, you're doing good. Small bowel looks really good no disease. Ok I'm gonna to try and go to the lower part."

And he does try but he's not having any luck because the lower opening of the stoma is really covered by my appliance which he cannot take off because obviously that would be a problem when I need to leave. I have an appointment to see the ET nurses an hour after my scope and I can't just sit around "au natural" (wee willy naked) until then.
So then Dr. Shen says "Ok, we're going to go through the bottom"
ME: "Um, really? Ah, because I'm a BIG CHICKEN" I realized though that I didn't have much of a choice because I can't have sedation because I have no one to drive me home.
Dr. Shen: "Its ok"
ME: "really? cause ah..."
But at this point Dr Shen has removed the scope from my stoma and I don't really have a say because I'm already being rolled onto my left side. I'm trying desperately to to not panic, And I notice the nurses DID NOT put my bag back on and now that willy is free of the scope and full of air he is spewing poo everywhere!
ME: "Hey!!!! we really need to put the bag back on!!"

Nurse "Oh yes, we need to do that"
Dr. Shen "ok, here we go"
ME: "OH, really? Umm, I…"
Enter scope - I'll spare you the detail except to say... EEK!
Actually, it really wasn't bad. I thought I would be miserable, and it was slightly uncomfortable but oddly enough NOT as bad as through the stoma ( I think he used a pediatric scope) And also I think it was largely due to the fact that now all that air had 2 exits - 1 my fistula (gross) and 2 my stoma.

Now I'm really trying to watch because this is my j-pouch which I really wanted to know how bad it looks. So I'm trying to see the TV around the nurse who has put the bag back on and is trying to clean me up. She turns around to do something at the counter and I move my hand and realize that my ostomy bag is ABOUT TO BLOW!!!!
It is completely filled with air - blown up like a balloon full to capacity and I squawk "HEY this thing is going to EXPLODE if we don't get it open now!"
Nurse "yes! I'm coming!"
I'm frantically trying to un-Velcro the stupid thing, but my left arm is pinned under my body because I'm on my side. Finally the nurse comes over with a giant pad of some sort and releases the Hindenburg.
Dr. Shen "Wow, your pouch is very narrow and constricted"
ME: "Narrow huh?" --- Relieved of the impending explosion of poo I can once again turn my attention to the video monitor.
Dr. Shen "That is because of the crohn's disease, and you have diversionary pouchitis but that is to be expected"
ME: "So just diversionary pouchitis? Pouch doesn't look too bad? So, if the fistula got closed and I got reconnected how would my pouch function be?
Dr. Shen "If you get hooked back up then pouch gets the nutrients it needs and pouchitis should go away."
Then he took a couple of biopsies of my pouch.

Then I notice out of the corner of my eye that there is a PAUSE in the flurry of activity the nurses have kept up to this point. I mean, really I'm a complete disaster, covered in poo because of the scope and the nurses forgetting to cover willy then the whole almost-exploding ilestomy bag incident. So the fact that they've STOPPED doing anything gets my attention, so I look down to see what the nurses are occupied with now and I notice something VERY ODD (Like this whole experience hasn't been insane enough already...)
I can see the light from the endoscope shining out from inside me ----- out of my stoma and into my bag!!! This is truly a stunning moment. My brain is trying to process that there is a light in my belly and I'm on the verge of hysterical laughter.

ME: "O my gosh!!!"
Nurse PAUSE "That’s the endoscope...."

DUH!! I'm not E.T. !!!

And I'm not looking at her but out of the corner of my eye I can see that her mouth is open (heh)
ME: totally laughing 'HOLY COW the endoscope!! That's hilarious!!"
Dr Shen (who up to this point seemed totally removed from every other odd thing that was happening) did seem to find this amusing too. :)

I know that this was an odd experience for the nurses even though they were VERY professional, trying to make it seem like this sort of thing happens every day there. But I know that they don't do a lot of stoma scopes maybe a couple in a month and the nurses are assigned a room and not a doctor so they cycle through upper and lower scopes. And I DOUBT very much that they do a lot of endoscopes on patients that have ileostomies! And I'm pretty sure they've never seen an endoscope light shining through a stoma!

Definitely one of my most memorable experiences!

Not a tame Lion

2007-03-11T20:58:00.000-04:00

Well I'm sure that doesn't make sense to some of you but to me, it makes a lot of sense to me. I'll explain.

Really, it all goes back to the fact that I need surgery, again. And this will be my fourth major abdominal surgery and perhaps you're wondering why? After all, I don't look sick, don't act sick. How can a non-sick person need surgery? Well, I'll expound on that in another post but suffice it to say right now that just because I'm not "sick" doesn't mean I don't have serious problems that need addressing, and sometimes the best time to have surgery is before you're sick. But on to the Lion factor.

So for the last year and a half I've been dealing with the fact that I have big intestinal issues again and I'm in the hospital again and having surgery again and I'm looking at a future where I'll be even more different than every girl my age again. And I'm getting the total gamut of reactions, some people making like its no big deal, get over it. Some tell me I need to pray more for healing and have faith. Some people telling me I need to explore alternative therapies, some people telling me that I need to have a total natural and organic diet, some people telling me that God is trying to teach me something, some people telling me its just the way life goes, some people telling me sickness is not a part of God's plan. None of this helps me, and quite a bit of it actually hurts.

And I've been struggling with this so much and contrary to those people that think I either A - choose to be ill, or B - blow my medical problems out of proportion (neither of which is true) I HATE that this has happened to me. I hate it, and I would do anything in my power for it not to happen. But its not in my power. And no diet or positive thoughts, holistic medicine or even ignoring it is going to change anything. See, I think this is God's plan for me.

Step back! Is she crazy? God doesn't plan for stuff like this to happen to people, lets face it there is sickness in the world and when it strikes someone sometimes God intervenes and sometimes He doesn't, but he doesn't plan it into their lives. Are you sure? I'm not. I don't see God as someone who reacts, I see Him as someone who ACTS. I've been reading this book by Joni Earekson Tada called "When God Weeps" about dealing with suffering, and its really nailed down and clarified some things I've been pondering in my head and heart. It deals with all the tough stuff, you know like "If God is a God of Love why is there suffering on the earth?" But the most interesting thing about it is there is no apology for the actions and words of God in the Bible. Its clear that He acts deliberately and with purpose all the time. Remember Joseph? Spent like 15 years in prison? Talk about suffering. You think God just worked around those nasty brothers of Joseph or did He PLAN it? Do you think God just let stuff happen to Paul (beatings, shipwreck, personal illness) or did he plan it? Did God just allow Joni to hit her head on that dock and break her neck or did he plan it? Do you think Christian martyrs deaths are just an unfortunate circumstance of the time and God just chose not to act, or was it part of the plan?

See I don't think stuff happens and God thinks 'well I guess I'll just work around this' I think He has a plan for everyone and its pretty clear for me His plan involves me spending an enormous amount of time in the hospital. It involves me going through many painful and embarrassing procedures, getting stuck with a needle more times than I can count and having multiple major surgeries. Don't like that thought? Me neither. But I can accept that there's a lot more at stake than my personal comfort. I'm getting to the Lion part.

Did you see or read "The Lion, the Witch and the Wardrobe" by C.S. Lewis? There is an excellent illustration of God here, don't miss it. The Pevensie kids are at the Beaver's house and they're talking about Aslan the Lion and they're looking forward to his return. Lucy asks "A lion? Are you sure he's quite safe?" "Safe?" Mr Beaver replies "Safe? Didn't you just hear me? He's a lion, of course he's not safe. But, he's the King I tell you, and He's good."

So yes, I think God planned for this to happen to me specifically, and that doesn't really make me happy but it is something I can accept. And I may never know why, I actually believe I'll be lucky if I get to see some good comes of it in my lifetime. I may never know who's path I crossed, never know what people I made a difference to. And I'm not saying that I'm this stoic sufferer either because there's plenty of times I've been angry at God about this, and I'm sure there are more days in front of me. But if God can use my illness for His glory then I just hope I'm a good tool. So if you do pray for me, pray that I'm a willing instrument and that God will use me for His glory.

Maybe God is not "safe" but He's the King I tell you, and He's good.

Meet Willy (show and tell)

2007-03-01T20:29:00.000-05:00

So I've talking about my ileostomy and stoma a bit and I realize that almost all of you out there have never seen an ileostomy and maybe you're not even quite sure what it is. So as today was happy wafer changing day I thought I'd take some pics and you can meet Willy my stoma.

Ok, so what exactly is a stoma?
Well thats the name for the portion of intestine that is brought through the abdominal wall and stitched to the skin. I've got my guts hanging out! You can think of it like a sock. Yes, I know, that sounds crazy.... but its easier to explain. Think of turning a sock half way inside out, then imagine that the portion where it begins to turn inside is the opening of the stoma and the edge is whats attached to the skin. Now you can push more of the sock out and just like that the stoma is supposed to protrude from the skin. Sometimes (usually when I've eating something particularly fibrous) the stoma retracts back inside (kinda freaky - huh!?!) I call it "burrowing" but most of the time he protrudes just like in this picture.

And yes, that is my midline incision you can see to the left of my stoma. Its actually pretty pale I think. I wear an ilestomy belt that pulls the appliance tight over my belly to help prevent leaking and because it feels more secure. The belt is tight though and it causes wierd indentations on my skin, particularly noticable on my scar because that tissue is much thicker than skin. So I'm not deformed - and yes, I am proud of my battle wounds! And my skin is PINK because I'm sensative but its not raw or sore or anything so its really fine.

Towards the lower portion you should be able to see a small opening, thats where stuff comes out. And when it is thick or if I don't chew my food well enough it feels funny coming out. The small intestine has no nerve endings so you can touch the stoma and I will not feel it, but it is pulled through my stomach muscles and so when stuff tries to squeeze through there I feel it. The stoma is a bright red because it is full of blood vessles and therefore it also bleeds easily. It also is always wet because the bowel secretes mucos naturally. I always think of my stoma like a stewed tomato! Of course that does dampen my desire for stewed tomatos....

Well once I get my skin cleaned up and dry I put on a new wafer. The wafer has adhesive on the bag and I cut the hole in the center bigger to fit snugly around my stoma. I place the wafer over the stoma and the bag then clips to the wafer and PRESTO I'm ready to roll.

And thats it.
So, now you know what a stoma is, and what my ilestomy looks like.

You've just earned a 1 CME Credit in Enterstomal Therapy - Congrats! :)

Adventures in colorectal surgery II

2007-02-25T15:02:00.000-05:00

So I had my ileostomy surgery back in February 2006 and it really did dramatically change my quality of life. And after a couple of months I became somewhat accustomed to life with a stoma. One night sometime in May as I was getting ready for bed I noticed a wet spot on the front of my pants and I'm trying to figure out where in the world it came from I moved my hand across my wafer and came back with blood and watery mucus. Well needless to say this freaked me out quite a bit. I examined my wafer only to discover that it had turned to mush in one part where it covered my midline incision. Now had it been a lot of blood I certainly would have gone to the ER but considering the amount of blood and the fact that I had an appointment with my surgeon within 2 days of this discovery I figured I would be ok. I did change my wafer the next morning to get a look at what was going on, a hole had opened up in my midline scar about the size of a pencil eraser, I could not see how far down it went and it continuously oozed blood and a watery substance. To be on the safe side I did email my surgeon and talk to a nurse. He said I would be ok until I saw him.

Now between this visit and my very 1st visit with Dr Remzi I had seen him at least a dozen times, and had been admitted to the hospital about 2 weeks before this for a partial obstruction. So Dr Remzi and I had gotten to know each other pretty well and I had discovered that not only is he kind and compassionate, he has an excellent sense of humor. As I'm sitting in that little examination room waiting to see him, I'm wondering if he will remember about my little hole problem and what exactly (if anything) we're going to do about it. I tried to sit calmly and read my book but no matter how much you love your doctor, when you don't know whats going to happen when he walks into the room, its pretty unsettling. Dr Remzi burst into the room with a nurse and a Fellow trailing (a Fellow is a doctor who has finished his residency and is doing a Fellowship for a particular specialty). Before I even had time to say "hello" Dr Remzi said "UP! Up onto the table." Well, I think to myself, I guess he remembered about my little hole. So now I'm laying on the table looking up at him and Dr Koh (the Fellow) and smile sheepishly. Dr Remzi grabs the giant light over the table points it at my belly, turns it on and says "Hello there sweetheart, ok I want to take a look at this thing." I obediently move aside the clothing that obstructed his view of the hole. The nurse is on the other side of the table and puts a glove on Dr Remzi's hand, just like you see it done on TV and she hands him a q-tip looking thing (not the foot-long one). So he starts probing around in the hole and I can't feel it because if you don't know this, scars don't have nerve endings. I'm just laying there trying to relax when Dr Remzi says "Give me the hook." My eyes get big. "HOOK???" I say as the nurse turns around to grab an instrument. "Hook??" I repeat as the nurse passes him a tool that looks remarkably like what dental hygienists use to scrape plaque off of teeth. "Yes." Dr Remzi replies "I'm going to hang you from the ceiling with it!" Now, of course I know he's joking but I emit an audible gasp or ACK of some kind. Dr Koh says "He's just kidding". This makes me laugh, "Yes, I know, Dr Remzi is a very funny guy."
Things are beginning to get uncomfortable for me at this point though because I've figured out that Dr Remzi is working on a suture because I feel this tugging in my gut. I can tell the suture is still attached to something and he's trying to pull it loose. I make the mistake of looking down and I see that this hook is a good 1/4 inch inside me and the tugging is increasing. "ACK!" I repeat one of my favorite phrases. Dr Remzi glances at my face "Don't look!" he commands me. So now I've got nothing to do but stare at his face and grasp the side of the table, try not to move or whimper.
Its fascinating for me to see Dr Remzi's 'surgery face' because every time I've seen him up until now its either just chatting in an office visit or him checking on me in the hospital or I'm unconscious. We usually just talk and laugh but now as he's doing what he does best he emits almost palpable waves of power and concentration. But alas, the tugging at my belly is really getting to me and I cannot contain my grunts of pain. Dr Remzi says "Ok, I'm going to stop, I can't get it to come out and I don't want to hurt you. If this gets worse we'll treat it more aggressively." He put the hook down, took of his gloves and the nurse swabbed the wound. After I got cleaned up I sat in a chair and our office visit continued like normal! This was certainly the craziest visit I had in the colorectal department though

I don't want my life to be defined by poop

2007-02-18T17:55:00.000-05:00

I realize that sounds a bit ridiculous but I feel like its something that I have continuously decide every day. Some days I don't care, I feel fine and nothing about the ileostomy or fistula is bugging me and I feel fairly normal. Other days..... Well, other days output hurts my stoma or the fistula is really active and making me miserable or I just look down at my ileostomy and hate it. And its hurtful when I tell people I may have to have a permanent ilestomy and they act like its no big deal. After all they had a friend or cousin who has one and he's doing just great. Sure, he's relatively healthy and adjusting but what has he gone through to get to where he's at?

I'm talking amputation here. No, I'm not losing my arm or leg but I am losing my rectum and its going to change my life forever. Its going to change what I see when I look in the mirror, the clothes I wear, the way that I do things. Please don't minimize my pain by acting like its not life-altering.

People tell me its not going to change who I am. I think that's misleading. Your experiences always change you. For better or for worse you are altered by what you go through. Its not the ileostomy itself that changes who I am but the things I went through before I got it, the surgery, hospital stay and recovery afterwards, the learning to live with it, the people I've met along the way.....

My life is going to change forever, the real question is how? Am I going to let the fact that I poop different from everyone else define me? I don't want it to. I want my experience to help me be more sensitive to the sufferings of others. I want to be able to help other young people and families facing life-altering surgery because I've gone through it. I hope that I can stand out from other patients to my doctors and nurses because I have hope and a will to survive it and not be bitter despite whats happened to me at my age.

Please pray for me. Pray that God will help me to accept the path that He has for me, that I will rely on Him for the strength I need to endure what I have to endure. Its a long hard road of recovery ahead of me both physically, emotionally and spiritually, and I don't want my life to be defined by poop.

Adventures in colorectal surgery I

2007-02-17T20:37:00.000-05:00

Some of you have been interested in my stories of time spent in the colorectal wing of the Cleveland Clinic so I've decided to chronicle them a bit. I know it doesn't sound like something that could be amusing but thankfully, I found myself laughing a lot more than worrying and that's a good thing.
I'll start at the beginning.

So my first visit to the Cleveland Clinic was pretty intimidating. Mind you, I hadn't been to see a colorectal surgeon since I was 13 years old and my memories are not fond ones as I'm sure you can imagine. And even just thinking about it colorectal is just one of those words that makes you clench your buttocks together almost involuntarily which is pretty much how I sat all that day.

After nervously waiting in the waiting area about 20 minutes my name was called. It was one of those moments you dread. You're sitting there minding your own business casually looking at all the other poor patients and wondering whats wrong with them then you hear your name. Like having your name announced over the loud speaker at school to go to the Principal's office, and everyone looks up at you as you gather your stuff and walk out of the waiting room.

The examination room is small and the exam table is in the center of the room, not off to the side like in other doctors offices. There are huge lights over the exam table, the kind you see in operating rooms and dentist offices, and the table has pedals so it can be adjusted. There is a counter along one wall with small electrical devices and large metal probes, latex gloves and surgical masks and a jar full of Q-tips that are a foot long. [I actually snagged one at my list visit !] There is flexible sigmoidescope machine with a computer on a rolling cart at the end. Its very similar to the device used for colonoscopies except its meant to be used only in the rectum and j-pouch and they normally do not use sedation as the procedure is very short. So there I sat all alone in the room waiting for the doctor in my gown and socks just staring at this machine. Its got a fiber optic cable with a light and camera at the end and a knob and handle at the other. And all along the length are tic marks with numbers, 10, 20, 30 cm. I got up to get a closer look. There is a hose running along from the sink into the machine and as I'm looking at it I see the words "air" and "water" along the handle and there is a VCR below the machine. So not only are they going to stick a camera up your rear, they're going to fill you full of air and water and tape it!!

I think terrified is the word that best describes my frame of mind as my surgeon came in and introduced himself. My first view of Dr Feza Remzi is intimidating. He is average in height and build but has a fairly strong Eastern European accent (he is from Turkey). He shook my hand and there is something very familiar about it because surgeon's hands are very soft but strong and they will never squeeze your fingers. It doesn't take me long though to realize he is kind and concerned. We discussed my history and my present problems which brought me to the Cleveland Clinic. He asked me "are you suffering?" I didn't even know how to respond. Suffering? No, I don't think so, people in Africa suffer. People with chronic pain suffer. I'm not suffering.... then he said "I think you are suffering." At that he told he would like to do an exam under anesthesia to access the fistula and j-pouch. When we got done discussing the logistics of the outpatient exam he asked if he could "take a look." I think I turned white as a sheet mumbled "ok" and slowly got up and moved towards the exam table, the nurse in the room stood up to help me on to the table. Dr Remzi looked into my eyes and said "NO. No, it's ok. I will look during the exam. We don't need to do this now."

See what I mean about compassion? He saw that I was terrified and instead of ignoring my feelings or telling me to suck it up he just stopped, even though it might have been inconvenient for him, he cared more about my feelings than his time. I got dressed and left, and I've never been scared to visit Dr Remzi or the colorectal department again, and believe it or not I even look forward to seeing him!

More to come!

I've got intestinal disease, accept it.

2007-02-12T19:32:00.000-05:00

I'm tired of being treated like I could be healthy if I really wanted to.
Why is it that if you've got heart problems or liver problems or cancer people will accept the fact that you're sick and need a doctor but if you've got bowel disease (crohns or colitis) then you just aren't eating right.

I'm not saying that we don't eat a ton of crap we probably shouldn't here in the U.S. but if I get another leaflet or copy of Jordan Rubin's "Makers Diet" or Kevin Trudeau's "Natural Cures" I'm gonna scream. Please. No more mega supplements, powders, pills, grasses, smoothies or meditation exercises. No all-organic, raw foods only, liquids only, gallbladder cleansings, colon cleansings (I haven't got one!), think positive, pray and above all DON'T LOSE HOPE.

I had a lady tell me a couple of weeks ago "surgery and drugs are not the answer, God gave us intestines for a reason." I wonder, would she have said that to me if I had colon cancer? What if I needed a kidney transplant? Bad heart valve?
These people are talking like disease and bad health are unnatural. Since when?? Cause I see a lot of disease in the Bible and I'm pretty sure they ate all organic food, didn't wear sunscreen, got plenty of exercise and drank a lot of water without fluoride.

Have faith, pray, don't lose hope.
Don't you think I pray? Don't you think I've spent hours on my knees day after day after day, month after month? The truth of the matter is that God does not do a lot of healing these days. Notice I didn't say He can't (that would be a lack of faith) I'm saying He won't. I'm not being cynical, I'm being realistic. I've had more surgery and spent more time in the hospital in my 28 years than most of you will in your entire life. You can't tell me that's not God's plan for me.

I went to the best hospital in the country, had the best colorectal surgeon in the world look at me, I've tried all the medical therapy and was finally told there is nothing more that can be done. I've even tried chiropractors, special supplements and natural remedies. I've had hundreds of people praying for me, I had pastors gather around my hospital bed an lay hands on me but God has not healed me. I have a hole in my intestine, now I'm trying to accept the fact that I've got to lose my j-pouch and my rectum so I can live a semi-normal life. One of the hardest decisions I ever made means I will never go to the bathroom like a human being again and I get treated like I gave up.

I have a disease. It will not in all likelihood kill me, but there is no cure. Its not easy to accept but I'm trying. Why can't anyone else accept it?

Happy Birthday Willy

2007-02-10T21:30:00.000-05:00

February 10, 2007 is Wee Willy my stoma's1st birthday, or (if you prefer) the anniversary of his creation.
Its been a rough year and I can't say that I'm thrilled he is still here. When I first got him I assumed I'd have him 3-4 months tops. But, he has relieved me of my much of my suffering from the fistula and I will be the first to admit I have had a very easy time with this loop ileostomy.

So shouts out to Dr Remzi for giving me such a good stoma, and happy birthday Willy. :)

Remzi and me

2007-01-26T13:26:00.000-05:00

What is a fistula? (Beware the gory details)

2007-01-11T20:20:00.000-05:00

The question on every body's lips. What is the fistula thing she keeps talking about and why is it such a problem?
If you're squeamish I beg you to stop reading now.

A fistula is an abnormal tunnel or connection between two organs or between an organ and the surface of the skin. The most common types of fistulas are perianal fistulas that connect either the colon or rectum and the surface usually just next to the anal opening. There are several causes for fistulas but one of the biggest is perianal crohns disease. I have a very specific type of fistula called a pouch-vaginal fistula. I don't have much of a rectum anymore, most of it was removed with my colon and I was left with what is referred to as a rectal cuff (only 1-2 cm compared with a regular rectum which is the 12 cm range). Pouch-vaginal fistulas are rare and occur in only about 2-9% of women with j-pouch and are either the cause of surgical error (if they occur within months of surgery) or disease (if they occur years later).

The primary symptom of a fistula is passage of stool or gas through the fistula tract. In the beggining it was painless but as the fistula began to get larger and the amount of stool that came through grew it became more and more debilitating.

I went to the Cleveland Clinic in August 2005 before things got bad. I had done my research on these types of fistulas and knew from the start there wasn't much that could be done. It was then I met my surgeon Dr Feza Remzi (best surgeon on earth) who did an exam under anesthesia so he could assess the condition of my j-pouch and location of the fistula. It was also at that point that I was diagnosed with crohn's disease of the pouch and was set up with a gastroenterologist who specializes in j-pouches Dr Bo Shen. Before having surgery to try and repair the fistula I decided to try medical therapy. I was on several combinations of medications including Cipro (antibiotic) Entocort (low-dose steroid) Tinidizole and 6-mercaptopurine (immunomodulator). None of these drugs were able to close the fistula and by the end of December I was so miserable with the fistula I was ready for surgery to relieve my suffering.

February 10, 2006 I had surgery to give me a diverting loop ileostomy so that stool could bypass the pouch giving me relief from drainage and a flap repair was done to try and close the fistula. From the very beginning Dr Remzi impressed upon me the unlikely chance of successfully repairing the fistula, but given my age and motivation to maintain some normalcy we both felt it was worth trying at least. The repair did not work because my rectal cuff and pouch are very diseased. Successful closure of pouch-vaginal fistulas resulting from crohn's disease is around 20% at 1 year. After we realized that repair failed I had multiple exams under anesthesia to assess the situation. Finally in August 2006 my surgeon felt my best shot at repair was a new method called Surgisis Anal Fistula Plug. It is a plug made of biomaterial - porcine submucosa (pig intestines!) Because genetically the pig is close to humans the material is supposed to plug the hole and then bond with the body's cells. It is fairly successful in closing regular perianal fistulas not associated with crohns disease. It did not close my fistula.

In November 2006 I once again met with my surgeon to discuss my options. He was very kind but also very frank (a trait I'm very grateful for). He said that a fistula repair would not work and the only way to end the draining and close the fistula would be to have a complete proectecomy (removal of the rectum and sewing shut anal opening). You may well ask why with the diverting ileostomy I would agree to have this done as it is possible sometime in the future the would discover a way to fix this. While stool doesn't enter my j-pouch anymore the bowel itself secretes mucous, and also because my pouch is diseased it bleeds. So, while I'm spared from the pain and debilitation of acidic stool passing through the fistula I get this nasty bloody mucous combo that cannot be controlled. I have lived with it for a year now and I'm sick and tired of it. Its disgusting, horrifying, embarrasing and the thought of living with it indefintely until "something comes along" is more than I can bear.

Though I was not taken by surprise the news was not less devestating. I had always maintained some hope that something surely would work for me because I was in the top hospital in the country for digestive diseases, with one of the top GI's and top colorectal surgeons, and after all I had been praying faithfully day in and day out for months and months and months. Surely God would give me a miracle.

The History of Kat

2007-01-11T19:26:00.000-05:00

In January 1992 at age 13 I was diagnosed with severe ulcerative colitis involving my entire large intestine. I ended up spent two full months in the hospital. I was so sick because I had been having rectal bleeding for months before I finally told my parents and doctor.
Why didn't I say anything? I can only say that I was terrified.
When I finally broke my silence my parents took me to the doctor who ordered bloodwork and an colonoscopy. My hemglobin was 4 and I was admitted to the hospital within a couple hours of the colonoscopy because of the severity of the disease in my intestine.
I spent about 2 weeks in Flagler Hospital in St. Augustine before my family doctor felt it was in my best interest to be admitted to Baptist Medical Center in Jacksonville where I could have access to pediatric gastroenterologists and surgeons. During the course of my hospital stays I was on an a clear liquid diet for over 2 weeks, I was on several types of medications including steroids and enemas. I began to have IVs infiltrate so often (almost every day) that once I was moved to Jacksonville I was immediately given a central line (an IV placed into the main vein in the chest). I had multiple colonoscopies, barium enemas, abdominal x-rays, CAT scans and ultrasounds. I also had mulple blood transfusions because my blood count was so low. We finally decided that surgery was my best option for a healthy and normal life.

The surgery I had was to remove my colon (yes, the whole thing) and have a reservoir formed out of a portion of my small intestine called a j-pouch. The techincal jargon is complete colectomy and ileal-anal anastamosis. The surgery was done in two stages. Stage one was done in March 1992 and consisted of removal of the colon and creation of the j-pouch. I was also given a temporary loop ileostomy to let the pouch heal before it took over its new function. A loop ileostomy is where a portion of the ileum (lower section of the small intestine) is brought through the abdominal wall and stiched to the surface. This small portion of intestine poking through the belly is called a stoma and waste exits the stoma (bypassing the normal route) and is collected in a special bag. Stage one surgery lasted just over 9 hours and I woke up in the pediatric ICU.
After recovering from surgery I was discharged from the hospital and was finally healthy enough to return to school.
Stage 2 was done 3 months later in June 1992 and consisted of reconnecting my intestine and j-pouch and closure of the temporary ileostomy. I only had to spend a week or so in the hospital and then was released.

My life was pretty normal after all this! I did take away a deep and abiding hatred of jell-o and I still don't do so well when it comes to having IV started
Life with j-pouch means having to go to the bathroom 6-8 times a day but I was able to do everything that I wanted and had no restrictions whatsoever. I went to highschool then college and even spent a semester in Northern Ireland. I met and married Shon :) and overall have had a very happy and healthy exsistence sans-colon.