Does anybody have Crohn's disease?

@lisalucier I don’t know, at this point I don’t feel that it will really resolve the issue entirely, from what I have read in the clinical notes from my procedures. If I’m still going to have accidents while asleep, it seems like it is just prolonging my issues. I think my Dr wants to try other options before I see the colorectal surgeon to see what options I have left, which makes sense. I have been very fortunate that I have had my jpouch for almost 30 years with minor issues other than the past 2+ years of the nightly fecal incontinence, which I still don’t understand, because it just came on randomly, no symptoms of any kind, just the leakage. I wish they could just go in with some elastic thread or something & just tighten up my muscles 🤭 This disease is not a joke, but sometimes you just have to joke or laugh about some of the no’s we go through that nobody else understands.

@suetex you gave good advice. In my case I try to eat no fiber as I have intestinal scaring both from surgery and the CD. Could and had resulted in hideous cramping before I quit fiber. 30+ years and still alive. Are you on any anti inflammatory? Steroids meant for short term I hear. Anemic? Fatigued all the time but can’t pin it definitively on CD. Probably contributes. Surgery and CD a bad mix unless no other way. Neither cause nor cure known. Most GI’s have no clue how to ameliorate. Biologics risky. Sorry.

Yes, I have CD.

@hopeseeker22 I am only taking Low Dose Naltrexone and reccommend to everyone who has diarrhea. Read about it and find a dr. who understands it. It is good for the immune system.

@lisalucier I may be repeating myself, I am currently in TX until mid April. I have a couple appts on my way home at Mayo due to nightly fecal incontinence that I have been dealing with for over 2 years now. I had some tests in Aug which showed some atrophy an inflammation. They want to try PFT first before meeting with a surgeon. During the day, I am able to function normally with an occasional accident (I wear pantiliners daily just in case). I wake up multiple times a night so never get a good nights sleep, so when I do sleep, I sleep hard and don't wake up in time to get to the BR unfortunately. Last night I woke up, felt that everything was fine and then woke up 2 hours later to a blowout, the 2nd one I've had in the past 2 weeks. All had been going pretty well for about 4-5 nights. I stopped using Metamucil powder and have been taking 2 fiber capsules and 3-4 loperamide after I eat and have avoided the jelly-like stools. Hoping & praying that they will figure out a solution. I am not looking forward to going back to a bag, but if there is no other alternative, I may just have to suck it up to have some control.

I’ve had it for 30 years. The only growths that I’ve had are polyps which were removed. I just had a 6 week hospital stay due to a bad flare up. That is only the second bad flare up that I’ve ever had. It’s a horrible disease. Please feel free to reach out!