Loving Life

My blog has been getting some traffic recently which I found surprising since its so old!
But, I love the comments I get, its always nice to hear that your experiences have helped others.

My k-pouch turned 11 (ELEVEN!!!!) years old this past May and I swear I never thought I would make it this far but I am ecstatic.

I empty 4-6 times a day, a lot of that depends upon what I eat, and if I'm drinking carbonated drinks etc. etc.  I can't pass gas like the average person so I gotta intubate to get it out!

Both me and my K-pouch are doing great and we have been on a lot of adventures together!

Here's some things I've been up to:

I'm now a nurse in the OR

I love to hike and bike

I went skydiving

I have taken trips to KENYA and ALASKA

I rode my first century bike ride (100 miles) August 2018

I have emptied in airplane toilets, squatty potties, portapotties, and in the woods :)

So very thankful for my K-pouch!!!!!

If you are wondering what a k-pouch is and if its right for you I recommend exploring the following:

http://carpekat.blogspot.com/2007/04/k-pouch.html

http://carpekat.blogspot.com/2007/06/post-op.html

https://www.j-pouch.org/forum/k-pouch-korner

Mucus monster

Yeah, its gross.
My little stoma has become a mucus monster.  I used to be able to cover it with 1/2 a nursing pad and be good for hours and hours.  Sometimes after I emptied my pouch if it wasn't that wet, I'd just keep it on.  Not now.  Oh no.  Now, I have switched to cutting up feminine pads to cover my stoma and I am saturating them.  Just when you thought I had stopped writing about gross things!
Sometimes If I don't completely tape up the pad covering my stoma when I lay down to sleep I can feel it trickling down my belly.  Yes.  And it is all just watery mucus.  So I guess I will be thankful my valve is not leaking.  I am having no problems in that direction.

But all this moisture means I am having more skin problems that just won't seem to go away.  I 've been getting these painful gaps between my stoma and the skin.  I am faithfully sprinkling them with stomahesive powder or Arm & Hammer medicated powder.  Doesn't really help.  Burns a lot when it hits the sore spot. Also I'm developing some granulated tissue from all the moisture. So finally I gave in and over the summer I went in to see the great stoma nurses at the Cleveland Clinic, twice.
 First they tried painting the surrounding area with silver nitrite to cauterize the skin and cause the new growth to cover the painful open area there. It was crazy looking.  All the skin that got painted turned black as as silver nitrite started working not ischemic, thats just how it works and I was warned but that didn't stop me from getting a little anxious about it!
Anyways, that didn't work.  Ended up going back and having a colorectal surgeon take a look at it.  I met Dr Ashburn since Dr Remzi didn't have any openings for like 4 months.  She was really nice though and I liked her.  She injected the area with a steroid and that hurt like the devil.
And it reminded me when she was doing it that Dr Remzi did a similar thing (if not the same thing) not long after I got my k-pouch.  So I looked back through my blog and sure enough, Sept 2007 Dr Remzi injected something (probably a steroid) into a separation.  I didn't have any problems after that.
This time that steroid injection worked too...  for a few months.  But now I'm still having painful sore area of separation.  Some days its worse than others which I cannot explain.  I sill powder it faithfully.  I even bought some liquid bandaid to see if that would sort of protect that area and the problem is that also stings like mad when I apply it to the open area so I am reluctant to keep it up.
I really hate to see the Dr again so I think I will just continue to deal with it unless it gets worse...
But this morning I woke up again and my pad was just soaked with that watery mucus and its just gross.  I don't get it.  When did I become a mucus monster??
Well, I will focus on the good things.  Though I am a mucus monster my k-pouch is in good working order and well, that's pretty fantastic.

Not exactly the news I was hoping to hear

Went to Cleveland Clinic on Wednesday for my annual scope with Dr Shen.  As scopes go, it was probably the easiest time of it I've ever had.  The nurses told me they have started injecting the pouch with CO2 instead of O2 and it is more readily absorbed by the body and less uncomfortable.  Well, I don't know about the absorption part, but it didn't hurt as much.  That is a plus in my book.
Anyways, so I am rock-free - hooray!
But, my pouch has some "mild inflammation."  The thing about being un-sedated when you are scoped is that you can really enjoy the tv show.  So he's going along and I'm watching and then I'm thinking to myself 'Hmmm, that area there looks red and inflamed.'  Then, as if on cue, Dr Shen says "Ok Katie, have some mild inflammation here."
*sigh*
He asked me some questions; on antibiotics recently? No.  Have a fever? No.
He says he doesn't see a lot of inflammation in koch pouches.  Oh, good.
Points for excellent nipple valve and my small bowel leading into the pouch looks good.
Outcome?
Two week course of Cipro and then re-scope in 6 months.
Call his office if I experience abdominal cramps or diarrhea.
I mean, I know, in the world of bad news this isn't terrible.  It may be a temporary inflammation that means nothing.
But, you know, when you've battled disease for a long time you just really think the worst about all the 'not-good' news you get.  And all the old fears and anxieties come flooding back in.  So my goal now is not to read into every pouch-twinge I get, and not to obsess about it.
Just go back to my life as if everything is normal.
Sometimes, that's easier said then done.

My k-pouch magically makes rocks...

Yes, you heard it folks.
I had my annual scope yesterday and Dr Shen found another rock.
Well, it doesn't look like a rock.  It looks like a raisin.
A monster raisin.
I even got hassled because they thought I swallowed a raisin whole.
Nope.
I don't even like raisins.
Thankfully, Dr Shen was able to fish it out with a "roth net" through the scope and I'm rock free again.
Here's a pic

Bizarre right?

When he fished it out he said I should put it in a ring hahahaha.
So 5 rocks last year,
1 rock this year - though this one is nothing like the others...
What will next year bring?

Stay tuned to find out :D

Just when you think you're normal....

You figure out, you're just not.
At least, that's how I feel.  Sometimes its like I have this secret identity.  But instead of whipping into the nearest closet to take out my super-cape I pull out a catheter and make a dash for the bathroom.
And nobody knows.

I think though its really hit me recently though because now I'm working as a nurse.  And patients are often constipated.  And I have NO IDEA what that is like.  I may have had constipation when I was a kid, but I had my colon out at 13 so really any bathroom memories from that age center around bloody diarrhea.  And you know, they don't really teach you about constipation because everyone just assumes you know about it.  So its my secret, I've no clue.  I can't imagine not going to the bathroom for several days.  I can't even imagine not going to the bathroom less than 4 times a day!  All my knowledge of fiber and stool softeners, laxatives and such are all purely academic, and so I ask questions, and this sometimes earns me a look.

Oh well.

On the other hand I used to eat imodium like it was candy, back in my j-pouch days.  So I can understand my patients struggling with diarrhea. But even now my goal is liquidy as possible!  The exact opposite of pretty much every other human on the planet except other k-pouchers - and we are a rare breed.  Not exactly normal.

I'm also due for my annual scope.  Going in at the end of February, and really besides the rocks I've had no problems with my pouch so I'm not really worried so much as....
Well, lets just face it.  No one likes going to the Doc, even if he's great, and Dr Shen is great.  But I know its going to hurt because I get scoped w/out anesthesia. I get scoped w/out anesthesia because the scope takes maybe 10 minutes and I  don't wann be drugged the rest of the day because of 10 minutes.  Plus, then I'd need a driver and my husband shouldn't have to take time off of work because of that.  I don't wanna go, but I'm going anyways, because that's what responsible grown-ups do, which is what I am (I guess).

I'm going to wear my "colons are overraated" t-shirt because CC is about the only place I can wear it and even though it arouses some attention the not-normals are normals there.
So, I guess I fit right in :)

Five year veteran

I really can't believe my k-pouch five year birthday is here - what an amazing answer to prayer!
Honestly, I decided going into this surgery, if it lasts me three years, then it will be worth it.  Here I am cruising past five though and doing great.  I'm saying the rock issue doesn't count!

Another big milestone for me though is finishing nursing school - I graduate next month!
If you had said to me five years ago that I would do that, I would have told you that you were out of your mind.  Check yourself into the Psych ward of the local hospital because there is NO WAY.  Because just visiting the hospital was awful and I couldn't even imagine working in one.
Then slowly, slowly the idea germinated in my brain and one day I thought ' maybe I COULD be a nurse...'

When I first started my clinicals just the smell of the hospital would make me nauseated.  So many times I thought "God I can't do this without you!"  And of course the best part is, I didn't have to.  Facing down all fears: smells, sights, sounds, has been pretty intense.  But I don't feel intimidated by that place any more.  Amazing how God has affected this change in me.

Not that I don't struggle with stuff... cause I do.
Living with a k-pouch has been good but its a challenge to me.  I don't think about it all the time, but some days its a pain.  Like days when I eat too many fruits or veggies.  Days where I'm traveling.  Days I spend all day at the hospital and school for class and clinicals - I think 'should I eat? How much? Where will I empty?'
I HATE emptying in public, so I avoid it if I can.  And I don't think everyone who has a k-pouch has this issue, but I have a bit of anxiety about it.  Its easier if I can find a private bathroom, then it doesn't bug me as much, but being in a stall and trying to empty standing up while not getting any of the splash-factor on me, and trying to figure out where to put my stuff... cause its not like your average toilet stall has a wealth of places to put things. Sometimes its hard - hard to be different, hard to think about every single thing that goes into my mouth...

So there's some stuff I"m not crazy about but I'm just so so so SO glad not to have an ileostomy.
And, despite all the crap I've been through I feel really really grateful to have it.
So I'm celebrating my FIVE year-old k-pouch.
Happy Birthday

so what were those stupid rocks about anyways?

No clue.
Really, neither Dr Monga or Dr Shen really had any answers.
All I know is they're really rare.  Dr Shen said I was his 9th although interestingly enough only the 4th k-poucher with stones, the rest were j-pouchers - yikes!
Found out they were 90% Calcium but both of them said that there's no data to support me limiting my intake of calcium, especially as I have osteopenia (common for the colon-less).  I read some studies as well last semester when funnily enough I had to do a poster for chemistry class on calcium that said calcium supplements weren't linked to calcium deposits in the body.  Though it was mostly referring to kidney stones I am sure.  And of course, we have no idea why I got them or if they'll come back.
That doesn't bother me too much though, I think because since I've had the rock-destructing surgery I know its not a big deal and I'll not be too concerned if I have to have it done again.  Also, in my whole life worrying about something never affected a change in anything and only served to make me crazy.
So I'm just going to go about my business and hope I never get rocks in my pouch again.
Meanwhile I'm back on regular foods which is awesome because baby-food veggies were getting really old.
Despite this really random rock incident though the pouch is doing great!

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.