Hi, I am new to this site, thanks to my dietician who sent me the link. I got a diagnosis of chrons/colitis in 2005. My various GI's have concluded over the years that my real diagnosis is colitis. After taking awful medications to control the severe effects of the illness, in 2007 I finally became extremely sick and at the point of death...which finally resulted in an emergency colectomy....I had an ostomy for 9 months and like most of you had a take down 9 months later. For the next few years I was like new again with rare problems. However in year 3, I started having complications, namely pouchitis and later Cdiff....the recurring Cdiff lasted over 3 years until we finally did the fecal transplant 3 times in one year and that problem was solved. Nevertheless, over the next few years I also began having numerous hospitalizations with severe pouchitis and other related GI infections. The most common complication came in the form of small bowel obstruction for which i was hospitalized for over a dozen times to let my gut rest, NG tube etc...miserable way to spend 3 days in the hospital with severe bloating etc....However, after the 12th time, I was taken down to the lab and dilated and Voila we had a new form of treatment to avoid small bowel obstruction, mainly, following discussion and agreement with my GI to have a flexsigmoid every 3 months along with a dilation to 20ml. With this method I have avoided hospitalization for the past 3 years. During the past few years I have developed periodic uncomfortable incontinence and with that skin breakdown....periodic, since i know my body well enough to know when to eat and when to fast and hydrate before and after engaging in work, walks, running, workouts, social settings etc....as most of you know and experience with a J Pouch you can't pass gas (or maybe that is only me) durin your regular day. At least that is the case with me...i can only pass gas when I get on my yoga mat after dinner and a walk....by rolling over side to side over and over again until all my gas passes. That practice is at night along with my yoga practice for 45 minutes daily since 2008 following the takedown when i couldn't figure out why i was so bloated.....for those of you who experience cramping from gas this (rolliing side to side on the floor or on your bed, just be aware that you don't soil your mat, blanket or bed) is the tried and proven method for me to pass gas. I can only do it at night since i do work, and albeit self employed the practice is not conducive to do at work..... my current medical treatment is biologic Entyvio infusions every 8 weeks with rifaxamin 550x2 as needed for flareups in between infusions.
However, over the years i have gradually lost weight for several reasons, first I am constantly listening to my body and I don't eat as much as i used to...although i am an athlete and still run, walk, work out 4 times a week and do yoga daily, my metabolism has slowed and consequently i don't eat as much which means i have gradually lost weight from my cruising weight of 175 down to 155. My current problem continues to be not cramping or frequent trips to the toilet but skin breakdown from not passing gas during the daytime...it used to be that my body was okay with having meals and waiting for gas to pass at night, but now i am having to either fast through the day and eat at night or eat during the day and suffer the consequences....not bloating or cramping or excessive trips to the BR, but simply leakage and hence skin breakdown as i can't always wash after BMs....I do have some solutions for skin breakdown which none of you mentioned, I mainly use stoma powder from my days of having an ostomy the powder works great short term and you can get adapt stoma powder from amazon for like 8 bucks a bottle...one bottle will last you one month. The second product I use is AD cream from Dollar general....its only 2 bucks a tube and i use it generously at times. HOwever as many mentioned the key is diet and keeping the area clean as much as you possibly can....i still have not perfected the incontinence, but i do know it comes from eating foods that produce gas....I absolutely love food and both my wife and I are great cooks and eat extremely healthy, but I'm now willing to try eating anything that is zero gas producing as that will finally solve my problem of gas+leakage. I will report back as soon as i have consulted with my dietician. In the meantime keep listening to your body and be kind to yourself and those around you.
mike