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Mark, there are two surgical options that would avoid having the bag; namely the kock pouch and BCIR. But I don’t believe you should be looking at having surgery yet. During the 30 years I had my j pouch, I had times of nighttime leakage that I used an absorbent pad to avoid soiling the bed. Eating a moderate size meal earlier in the evening plus lomotil helped reduce nighttime problems. I also had pain and itching from having to “go” up to 15 times a day. I found that using a bidet and barrier creams helped reduce this discomfort considerably. I learned to adapt to these problems knowing that I did not want to give up on my pouch at the time. If you would provide more detail, especially about your “pain”, I am sure others will provide suggestions that could help.
I'm glad to see this topic, because that's exactly what brought me back to these boards -- and should have been back earlier since the J-Pouch Group always does help. Anyhow my problem is also leakage -- not so much at night but in the daytime and especially after meals. Things go though me so quickly that the leakage is bad and it keeps me from the walking and other exercise I know I need. Also it's not so much stool but just liquid. I'm kind of at my wits' end. I went to a new colo-rectal surgeon here in Phoenix and he sent me to a urology group that does electro-stimulation of the rectum (or what's left of it). I had five of those treatments (very uncomfortable) and of no seeming benefit. Anybody have a reversal of the j-pouch with ileostomy? If so how did it go. I don't want to do it if it can be avoided, but no exercise is not helping my diabetes. I retired two years ago, moved down here to Phoenix and started getting some exercise and lost 38 pounds. But with the increased leakage that all is pretty well stymied now. I sure am open to suggestions.....
Mark, before you jump to a conclusion of surgery, have you seen your surgeon and or gastroenterologist ? If so and he has recommended a removal of your pouch, perhaps a redo is possible. I can only imagine how difficult this is for you at 17. You should not have to be dealing with these issues. My son is 24, and he shouldn't have to deal with this stuff either. You kids should be out living your life. I'm sorry you are dealing with this.
dianne
I was 19 when I had my surgery. Leaking ended quite soon for me, and I never took meds, but wondered if you've ever tried Lomotil? It's a prescription med to slow the bowels. Also, how about opiates in general? Some people have luck with opium tinctures, as opiates slow the bowel. And what is your diet like? Do you just eat any old thing, or do you try to tailor your diet to slow things down? Considered sugars as an issue (check the FODMAP diet for ideas). Also, have get tried considering all so the things that can make things problematic (SIBO or pouchitis?). Have they tried antibiotics? At this point, I'd exhaust everything to try to keep the pouch. These are just a few things off the top of my head.
Recently, after 12 years living with my J-pouch, I have developed leaking similar to what you describe but only during the daytime. Burning, as well. Liquid seeping/leaking especially after meals. My surgeon did a quick look but couldn't see much because I hadn't prepped so next Monday I'm having a pouchoscopy. Meanwhile, he suggested I use Citrucel daily to thicken my output. It seems to help although I'm not back to my typical output schedule. I use a heaping tablespoon of the Citrucel powder in about 6 ounces of cold water every morning. I still think something is causing this problem. I didn't realize you were in the UK until near the end of your last letter to us. I was going to suggest a consult with a surgeon at our Cleveland Clinic and maybe you can still do this via electronic mail, etc. Others on this board can tell you how to do it. The surgeons there....at least some of them......seem to be real pros at solving problems like yours. They might even work with your local surgeon to take care of the problem. I have no idea of the cost for consultations but others here will know. Hang in there. Best wishes for a resolution to your challenge!
Some strictures can be pretty stubborn, and can take a fair number of treatments to stay open. If you give up on the treatments (dilations) prematurely, you'll simply be left with a stricture. I don't know if your doctor thinks there's more to be done in that area.
When Cipro alone stopped working for me, after a couple of years, Cipro + Flagyl did the trick very nicely.
No matter what path you follow you'll have some challenges - that's just the way it is. Good luck.
Hi Mark. This is my first post, though I've been following the board for about 2 and a half years. I got my pouch about the same time you did 2 years ago. I'm 68 years old. I've struggled with leakage, mostly at night or anytime I fall asleep, especially if it's a deep sleep. I wear depends at night, just in case. Lately the problem seems to have improved but it still happens occasionally. I wanted to mention one thing to you. I recently took two doses of pepto bismol about 45 minutes apart just before going to bed. Not only did I have a very restful night, but for the next 2 days I had the most solid output that I ever remember having. I read somewhere that pepto inhibits the passing of liquid through the digestive system. I don't know. I just know the results I've had. Since then I've tried it again with similar results. I don't take it every day, maybe 2 or 3 times a week. I'm concerned about long term usage but have not found any good info on that subject. I hope you don't give up on your pouch too quickly. It took more than 8 months before it started working for me at all and I feel like it's still evolving. Hang in and keep looking for things to try. Don't give up hope.
