Hi everybody, new here. I just recently had a k-pouch put in last week at the cleveland clinic by Dr. dietz (great guy). Anyway, I'm on my own now and pretty nervous. I live six hours away from cleveland so after they released me from the hospital I stayed in a hotel nearby for a couple of nights. Anyway, while there I was changing the gauze padding around the stoma and permanent catheter and I was noticing a lot of output. I stopped by and saw dr. deitz and he said it was normal but I'm getting nervous again. Today I irrigated my cath and some water and stool gushed out of my stoma. I'm now certain that some stool seeps out around the tube, especially when I irrigate. Is this normal? Also, I never feel "empty". I always feel kind of bloated and gassy but when I irrigate not much comes out. Last night I fell asleep and forgot to put the bigger night bag on so I woke up with a sore stomach and completely full leg bag. I'm afraid I let it get too full and perferated it or something. Is that heard of? I'm really scared of valve slippage too. I'm not sure I can do this for 4 weeks. Please help!

Hey you are doing just fine. My surgeon was about 6 hours away and I too stayed in a hotel for a few days near the hospital. If you perforated your bowel you would already be in the hospital. Weird things are going to happen, expecially when you are cathed 24/7. I still have liquid come out around the catheter at times and as long as these surprises come in the bathroom and not in public, I am fine with it and it's not a problem.

Calm down and take it day by day. If your valve slips at some point and can't get in the catheter then you go to a hospital where they get it in then you schedule when to fix it and cath 24/7 till it is fixed. Any hospital should be able to help you cath in an emergency so you don't have to go to where you had your surgery.

quote:

I'm not sure I can do this for 4 weeks

Yes you can, because if you can't you know your only other option. I don't know why you came to have a koch pouch but it's work to have any surgery. Let alone a new man made organ in your body. Stick with it, listen to your surgeon and before you know it you'll be training the pouch then you'll be free. I was snowboarding less than 7 weeks after my surgery. I wouldn't say I had a perfect recovery from surgery either. And yes I was still training my pouch. You'll have good and bad days and soon you'll start to notice more and more good than bad and start to build confidence in yourself and your pouch. It hasn't even been a year since my surgery and in about 5 weeks I am putting everything I own in the back of my truck and driving to Alaska to return to school (even though I have never been anywhere near Alaska). I've been dissected and put back together differently 3 times, any challenges in Alaska will seem petty in comparison. You have maybe 1 month of hard work and another where it should get easier every day. Then what, the rest of your life, happy, healthy, and that cursed colon nothing but a distant memory. Stay the course, it sounds like you just got home from surgery...

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

Hi.... welcome to being a kpoucher!

Just to reiterate some of Keith's comments to make you feel better..and read through these forum posts - so much great info for you!

While your pouch matures in size it will feel full even though it may have little output. I accidently overslept a couple of times during those 1st weeks - be sure to wear the large leg bag and set 2 alarms if you need to.

Baby your pouch as it matures and you heal -watch your diet. Chew Chew and Chew!

While the catheter is inserted into the stoma it causes the valve to not be completely closed. Plus it's swollen a bit and will get sore. Once you start inserting cath to empty only as needed - you may still have leakage around the cath while you irrigate off and on. also, when you pull out the cath...some stool may remain in that inch between the stoma and valve so it will come out right away or a bit later on the pad.

Please continue to reach out and don't worry - you'll be getting the hang of it fast!

Thank you both for your commments. They really did make me feel better. I've had a lot of surgeries in the past 7 years and something has gone wrong with each, ending in an emergency operation. I guess because of that I get more nervous with each new procedure. Keith, it looks like you had an illeostomy for awhile. I had one for 7 years until this k-pouch so I just had a quick question. Do you feel you can eat everything you could with the ostomy? I actually did well with nuts and popcorn,etc (sometimes with a little grape juice to help)so I'm hoping I wont have a problem with the k-pouch. Obviously I wont even be trying foods like that for a long time but it was something that came across my mind. Thanks guys. -Alex

Honestly I eat what ever I want. I did have problems with obstuctions with my Ileo but it seems that my last surgery took care of that (knock on wood). The only problem I have with things such as nuts, popcorn and veggies with a thick skin (peppers, potatoes, etc) is that they clog the catheter then your just on the pot for a while flushing and unclogging the catheter for a while. I eat it if it looks good and deal with it later.

It's also very individual how a person reacts to certian foods and you should be able to start experimenting once you are training your pouch.

????? Obviously Cena, you are not a j-poucher or a k-poucher!

Jan

hey new guy...you will be fine...i had an ileostomy in 1981..then converted to a k-pouch in 1985....one revision in 2007....I was careful in the beginning...but eventually you will try all foods and see how they work for you...everything works for me...i eat nuts, popcorn, fruits and vegetables....margaritas, wine and beer are always on my list...hey they just opened the lifts at mammoth mountain...bye bye...