As I begin to search for a surgeon I am curious about a few things that are K-pouch related.

What is the first year like? How often are you emptying it? What types of food restrictions do you have? Or are there any forbidden foods/drinks? Long term what types of food restrictions do you put yourselves on?

Gabe, I was young at 21 but remember this:

After the surgery I was nervous emptying. I would sit on the toilet backwards and sometimes use a bucket. But within a week I got the hang of it and emptied sitting on the toilet facing out. I could pee and empty in a few minutes. If I have stool that is too thick, it can take a few more minutes. If I'm in a hurry, I just insert the cath to release some gas and then wait to empty again later. Sometimes you have to bend down or side to side a little to help release since the wholes on the cath are small - not a major issue.

I was embarrassed to rinse my cath out in public restrooms (and still to this day don't do it) and bring a zip lock baggie to put in my cath and rinse at home.

I cannot tolerate foods if I eat them daily that bind such as pineapple, celery, carrots bananas or beans. I avoid skins (they stick to the side of my cath) and anything that I cannot chew into tiny peices. I avoid foods that cause gas if I'm out for the evening and don't want to hit the restroom to empty air often such as seeing a movie. Generally you empty after a meal depending on how fast you digest and then inbetween depending on if you snack, etc. It will hold alot so you are typically not rushing to find a restroom. I also now take immodium before going somewhere to slow down the output.

NOTE: if you eat RED licorice, beets, red jello, drink red gatorade, red juices etc. your poop will look like blood. Don't panic!

I use diaper guard around the stoma if it gets a bit red since I have alot of mucous.

I keep a catheter in my car, at my parents, with a neighbor and my sisters incase of emergency so that someone can bring it to me. I also would tell the HR dept at my employers and give them a cath.

I drink whatever but try to avoid too many drinks high in sugar cuz I've gained weight.

If you take medication - same should apply with any ostomy - large tabs may not digest and come out whole.

If I get a stomach bug and get dehydrated I hit the ER to get IV fluids. If I just have diarrhea I can use rice water and electrolyte replenishers - no different then with my ileostomy. If I am really sick and to weak to get up, I tape in my cath (very easy to do) and attach it to a urinary leg beg which can be emptied bedside.

I lived at a beach till I was 32 and wore a bikini and and no one ever asked about it. If I was to get intimate I simply said I had something removed and since it's covered never explained until the time was right. They thought it was a mole or something like that.

If I think of anything else, I'll edit. I hope more kpouchers respond.

This message has been edited. Last edited by: J,

I am having my k-pouch done on the 25 of this month. This is an awesome thread, answered alot of questions I had as well. I too am young, 22 now, I was 20 when I had my first surgery. They are going to convert my current j-pouch into the k-pouch which I hear is good because the pouch has already had time to mature some. I know they leave a catheter in for about a month to let the pouch heal, will that be less time for me since they are using an already made pouch? I am getting pretty excited and can't wait to be pain free (I hope to god). I also just found out I got approved for social security disability, which is a whale off my back.

Well my k-pouch turned a 1 year old in May so my first year with the k-pouch is fresh in my mind.

I had a j-pouch first too, for 15 years, I got my k-pouch at age 28. This was by far the most difficult surgery I have ever recovered from. I'm going to be brutally honest, it was rough and I was miserable for weeks. The constant drain is a constant PAIN and aside from the normal surgical recovery pains getting used to it is a whole new ballgame.

I was TERRIFIED when I went to learn how to intubate. The nurse said I was a great student but I felt helpless. I also hated intubating (at first). I hated it and it took a long time and I was constantly nervous and the only thing that got me through it was knowing that one day I really would get the hang of it and one day it wouldn't be a big deal and one day I might not actually mind it. Because that's what everyone on this webboard was saying, everyone who'd had their pouches for years and years talked about how they loved it, how easy it was etc. I just figured, like everything else it takes time.
It took a long time, probably 3 months before I was fairly confident (but still avoided emptying away from home if at all possible) after six months it didn't bother me in the least. And now? Now I could care less I've emptied at restaurants and amusement parks and coffee shops and target even...

The first time I realized that I only had to empty my pouch 4 times I actually cried tears of joy. See I've been going to the bathroom 7+ times a day since I was a kid, and this is freedom I've never known.

As far as food goes. I don't do salads or many raw veggies, just too much of a pain to get through the cath. Don't do many raw fruits either, been eating a lot of cantaloupe recently and I love it but pineapple is out and so are most berries and grapes, the skin is just more trouble than its worth.

Oh I'm gonna add a food to the RED list. BEETS. beets come out dark red, really really looks like blood.

I do it again in a heartbeat. I love my k-pouch. I hope that helps you prepare for whats ahead.

Good luck, take care
--
katie

i had my ileostomy in 1981..in 1985 i had the k-pouch...my children were born in 1980 and in 1984...so i was still nursing with k-pouch surgery being done...when u have other responsibilities u kind of move on...to me it was a blur...set the alarm to empty your pouch, get up and get a kid to school, go to work...i ate whatever i wanted and still do..fruits, vegetables,beer, wine, martinis, it doesnt matter to me..ask for the largest and shortest cath.u can handle...much less hassle..that way food doesnt get stuck in the cath...easier to clean, easier to carry..

i've had mine for bout 2 years i think. and just like everyone else, you're nervous at first, but you just gotta find your groove.
i still would rather empty at home than out, but i'll add to kaydbird's list of places i've emptied.

i've emptied on the side of the road in a road trip, in the airplane on the 8 hr flight to amsterdam, in the bathrooms on the van gogh museum, a train station in brussles, numerous gas stations on the side of the road, target, starbucks, borders, movie theatres, port-o-potties at lollapalooza, a public beachhouse bathroom, even a bar/nightclub.

i'm not saying it's a cakewalk. but i suppose it just goes to show that if you're determined...well...you can do alot

foods? also like others i stay away from skins and, gas producers, and carbonation. i miss salads. terribly. but was just one of the sacrifices i had to make. i mean, i was gonna have colon surgery regardless, so it was more a matter of what style.