Finally, rock-free

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

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

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

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

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

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)

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....

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

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

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

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?

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

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

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

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.