A very good point was made with the J-pouch you eat to thicken; but with the Kock Pouch you eat to thin. "Major" difference, watch for foods that thicken.

I wanted my Kock Pouch so bad, I would have tried it no matter what. I had an end ileostomy for 8 months and I am allergic to adhesive and didn't like an external bag. I made the right decision back in 1978, and I would do it all over again. Time and adjustment, you are learning a new plumbing system. Give it time, think positive, think of how lucky you are to have the opportunity to even have one. If it doesn't work out for you, then go back to the end ileostomy; but 5 months isn't enough time to decide that.

Thanks again for your continued thoughts and positive words...

I realize that I am quite negative with the results of my k-pouch surgery. Maybe a result of my similar pain/illness with previous j-pouch, 4 surgeries in 3 years, and that I appear to have had incorrect k-pouch expectations. Ultimately, I am grateful that my health allows me to function, gain weight, and excercise to some degree. I do remain positive about my life, and pray to regain my full health.

Regarding the "permanent tube" idea - sorry, but, I dread the thought. When I had the permanent tube in the hospital I had a VERY difficult time expelling stool, and even blew chow enough that I had to have the ng tube to pump my stomach. Seems that I cannot get stool out without twisting and moving the tube around/out, alot. Also, six months is six months out from surgery for me, (that is the minimum Dr. Fazzio has requested), then I will seriously begin to reconsider this decision and discuss with local surgeons. (There are financial reasons also to move on.) With all due respect to everyone, I don't think it unreasonable to question why one would feel so poor and have so many difficulties 6 months after surgery, were that the case? Sorry, but that is my reality with this k-pouch, though I think it great for the many of you that have seen such positive results. I have another followup at the CC in early March - which is 6 months out.

I like to hear about k-pouchers who are able to eat a reasonably wide diet, irrigate 2-5 times per day, and travel at will...please pass those on as it is inspiring to me!

Thanks again!

If you were so content with the ileostomy, why did you decide to try the Kock Pouch in the first place? It doesn't seem like you are that interested in making it work and trying to figure out the reasons why you are having trouble. I cannot imagine Dr. Fazio making this surgery out to be a "piece of cake with no complications", since it is the most complicated surgery due to the valve. Once you lose your colon, all surgeries have their pros and cons; that is just the way it is. It takes a willingness to try different things and figure out what is the problem. You have too thick stool, more grape juice and easily digestable foods are needed for now; but that is up to you.

Here's a post to read:

http://j-pouch.org/eve/forums/a/tpc/f/5851071921/m/8041...701000212#2701000212

Joe, i'm sorry you're frustrated, i know i've been at my wits end sometimes.
i can't really offer any other advice than the things i've been trying. which are all over this board.
i don't think it's unreasonable to be questioning your quality of life 6 months out from surgery. but as others have said, i guess the main difference is the will to keep seeking out reasons/causes/solutions without giving up.
i mean, every complaint i've made on here (and trust me, every day i probably curse the gods for something or other kpouch related.)
but even with my complaints, my aim is never "i should get something else besides kpouch". i know that i want this. even with the problems i've encountered. cuz bottom line, i intend to reach the point where the pouch is working in a more manageable way for me. it may take me awhile.
but going into this surgery i told myself to not expect miracles. i figured it would be a difficult time initially. for me, maybe moreso than you, b/c this was one surgery that was going to take my colon out, and tumors, and leave me with a completely new set of plumbing. whereas you've already had an ileo and a jpouch.
i'd not had any experience with any type of ostomy before this.
so i just figured it'd be a long road before i was completely adjusted. and even though I'd LIKE it to be all rainbows and unicorns already...truth is, i know i still have a long while to go before i could rightfully say that i've done everything i can, and it's just not the right option for me.

i really do hope you get more success soon. and as far as the constant drainage. try not to base your opinions on when you had it in the hospital, b/c that was right out of surgery. it would be different now i'd think (maybe not the output, but the vomiting i'm sure.)
i was throwin up alot in the hospital afterwards, and they threatened me iwth an NG tube (they thought i might have had an ileus, and if i threw up one more time they'd put the NG tube in) i was so petrified at the thought of an NG tube, i willed myself not to throw up any more.
heh, it may not have been sheer willpower, but i didn't throw up again (and when i was feeling nauseas i wouldn't tell anyone for fear they'd think it was time for that NG tube)

so while constant drainage can be a pain...it shouldn't be an unthinkable option. it can actually give you a bit of a break, as you shouldn't have the bloating and gas as severely or as often if it has an immediate way out.
and seriously, if the stool is too thick...try overloading yourself on grape juice, coffee, tons of water. it can't hurt right? to just go nuts with the fluid. and see what happens. i mean really just go out of your way to flood yourself. you know...experiment a bit.

please let us know how things continue to go. and again, i sincerely wish you the absolute best of luck. truly.

Here's a travel at will eat most everything use and empty my pouch 3 times a day person. Me. I eat just about anything, except dried fruit. I hate mushrooms, and I eat most everything else. Well not red meat, but chicken, fish, salad, mexican food, greek food, healthy food, I drink milk, coffee, alcohol (although I did find out that doing shots gave me a gnarly stomachache) but I like red wine, margaritas, other foofoo drinks. Hows that for most everything. I am also VERY active. I ride bikes, go to the beach and boogie board,kayak, hike, run, swim, I did and 6 hour adventure race,( I didn't eat alot of food before, just maintained my energy during) so that I was able to continue the race without stopping.I like long, long walks, and running, I like to go camping, I just make sure there are decent restrooms where we go. coming up I am going to do the camp pendleton mud run with some friends, The only thing I haven't done is backpacking where there are no toilets, that's a little too scary. Emptying my pouch- 3 x a day every day. when I get up in the am. somewhere between 12 and 3 for lunch and between 5-9 in the evening. The only times I have much gas are, well, never. I take digestive enzymes, I also have learned that
gas-x or phaseyme (like gas x) works wonders, If you think you may be having a gassy food. take a pill before. Or sometimes I take one first thing in the morning just because. I got my k-pouch in appx 1998/9 (don't remember exactly when) does that tell you anything about life now. It's so great that I almost have forgotten all the bad stuff I went through in learning all that I know. It was difficult at first, super frustrating, I didn't have anybody who understood what I was going through. Or how painful it all was. People cared but its not the same thing. I wish I had found this web site 12 years ago. It is really helpful to read all the posts and know that these people have had much harder struggles than I ever did. I am very thankful for my k-pouch, my life, and all the activities I can do. I guess you just have to get a positive attitude and know that living is better than dying, which is what would have happened to us not all that long ago. If you ever get to San Diego see Dr. Dana Launer, he was my surgeon and He did an awesome job.

jilly....i <3 your post!

love the inspiration. all you kpouch 'elders' are my idols!

I want to be clear. I was never told that the surgery would be a "piece of cake" and I recognize complications can occur with any surgery - as this is not my first one, complication or surgery. But, I have had, what I will kindly call and feel are...surprises.

Thanks for the continued support and advice...I will let all know how things move along...no pun intended.

Joe, you can also try getting down on your hands and knees and rocking forward and backwards to loosen up scar tissue or adhesions, really stretch those abs. Another thing, hang from your hands and let your body weight loosen up your scar tissue and adhesions. This will help with adhesions if you have them. I wish you the best, you are frustrated which is understandable but now it is time to try to do new things to conquer the problem because what you are doing isn't working.

We are here to give you all the experience we have been through. I am 28 years now with my Kock Pouch. In the beginning, things are harder and you need to try what works for you personally, whether eating style, drinking grape juice and lots of water, trying magnesium supplements or whatever. It will get better, your digestive system and you are in the adjustment period still. Learning to chew and drink more, is so important, I can't stress this enough. Hang in there, vent away!!!!

Hi Joe,

I, like you, am a "new" k pouch recipient. I just celebrated my one year mark. Reading your original post in this thread reminds me ALOT of what I went through after I had my j pouch removed and had an end ileo. I was bloated all the time, even with an ostomy that never stopped expelling. I would empty the bag a dozen times a day and never felt like I was empty in the gut. It turns out that it wasn't so much my lower GI, but the upper GI. I had a gastric emptying study done and it showed that after 90 minutes, my stomach wasn't passing food through. I was told that my digestive system was basically paralyzed. It is called gastroparesis. It caused the same symptoms you describe as well as bad cramps when it did start moving food through and what the docs term "psudo obstruction", basically all the horror of an obstruction with nothing showing on film. At the time I was put on Metocloprimide (sp?) to get the intestines moving again. I had a side effect to it and couldn't take it with my job. I quit eating anything. I lived on Ensure 4x a day. I was miserable. The doc suggested I try Zelnorm, but my HMO wouldn't pay for even part of it and I couldn't afford it.

I finally switched ins. and started the Zelnorm. Within a couple of weeks, I could eat again. I thhen went in for the Kock pouch. I had mine done by Dr. Dana Launer in San Diego like Jillyian and I haven't had a bit of trouble with the pouch. I still have issues with the gastroparesis, but it is much better now. There are certain foods that make it worse and I eat them only occasionally. Other than that nothing is off limits for me. I drink Diet Coke like water, and have no problem with gas. I eat popcorn and occasionally corn. I love green salads again. Mushrooms, peas, nuts and the like; I just eat in moderation and chew. I did drink a lot of grape juice at first, but haven't for about 5 months now. I do get a lot of plugging of the tube because of some of the things I eat, but I am enjoying the food too much now to let it get to me.
Now I could tube 15 times a day and get stuff to empty, but I only need to three times a day, maybe five if I am having more "pressure" than normal. I think that having the gastroparesis may even have helped me with stretching the pouch. I rarely feel pressure in the pouch, usually its upstream.

I guess I got a little long winded there, what I am suggesting is that it might be a motility issue rather than a pouch issue. I can certainly understand your frustration, I felt the same way when my J pouch was failing to live up to my expectations. If you want to talk about this more, PM me. And as Jasmine said "Vent away!" These folks are great listeners.

Les

Les so good to see you. Joe this does sound like a possibility for your intestinal problems. It does sound like your trouble is above the pouch Joe. Thanks for posting this Les, a new experience for us all to know about and think about with newbies. Joe I would discuss this with your doctor, it could be it.

I would also like to mention rice, be careful as it can clump and cause digestive pain and blockages and partial blockages. I was surprised to see that it is recommended in the J-pouch diet, as I was warned about rice causing clumping and abdominal pain. I know I personally have trouble with rice, but I don't eat it very much anyway.

Joe try "instant folgers coffee", it thins better than grape juice. Just be careful not to dehydrate, but this may help to get your intestines moving as coffee is a stimulant. I personally don't dehydrate easily as my intestines have learned to absorb water over the years. So drink water too.

Thank you again for the thoughts and advice. Les, I have passed your experience on to Dr. Fazzio's nurse, asking if he might consider this as a possibility. Dr. Fazzio has said it may very well be "upstream", too. Really, folks, I think that if I drink any more fluids I will probably float, or even explode. Based on my experience, were this my 'ole illeostomy bag, I think the contents would nearly always be liquid and constant, now they are anything from thick to medium thin??. Joe

You might even be bouyant

So glad Les dropped in.He has had an experience the rest haven't and has shed yet a different light on the situation. Let us know what Fazio says, Joe.

Keep venting and posting, I think it is "upstream" too. It has to be Motility, adhesions or a kink above the pouch. Stretch your abs and try a liquid to soft diet and see if that helps, it's worth a try.

We are all learning together here, to help eachother the best we can. Everyone has different experiences, and thank heavens we have this place to come and share, support and learn. Thank you Dad Bill and Uncle Dave, oh yes and Goddess Jan!!!

Joe - I noticed you lived in Tampa. I had a modified K-pouch (BCIR) created not far from that city. I went to Palms of Pasadena Hosptial in St. Petersburg. I am bringing this up because the nurse involved with the program there is great and she might be able to give you some suggestions. Her name is Susan Kay. Anyway have you been tried on some Cipro. When I get pouchitis, my only symptom is gas and mild nausea. A short course of antibiotics makes me feel like a million bucks. I also use to have a lot of gas or rumblings in my belly. About a year ago I started some Papaya enzymes which I purchase at a health food store. Some one also told me that gas x has come out with a strip that desolves on the tongue. Hang in there. Ellen

Just read through the long thread on the subject of your frustrations.
Very simply, if you've been able to gain 20 pounds (much needed no doubt) in 5 months, that's 4 pounds per month, from which I deduce you're eating rather a lot of food. The more one eats, the more one "goes" whether through an intact system, j-pouch, k-pouch, etc. Maybe when your weight increases to what is "normal" for you, you'll need to intubate less often as you cut back on food intake. A temporary low residue diet might also be a good idea while you're having problems.
Also, be sure you're emptying as completely as possible each time, perhaps by irrigating a couple of times after you feel finished.
I hope you are already feeling better.
Carol