@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.
I'm not sure anyone offered some diet suggestions to Sharleneh- or anyone else so I will try. I have had Crohn's for over 40 yrs and I am still here so must be doing something quasi-right. In a flair- go as low fiber as you can. Get calories from from sources that your gut doesn't have to process. Instant mashed potatos, jello, puddings and the like. Do this for several days until things quiet down and/or your doc offers something else. Then add back things still concentrating on low fiber. Most cook books or the internet can offer low fiber diets. The Mediterean Diet is not for you. When you are tolerating this is well, you still have to be careful. Don't get overconfidant and trip yourself up. You will find out your trouble spots and they are likely different for everyone. Look at Low Dose Naltrexone and its effect on Crohn's disease. It helps over 80% of us, me included. I've even had a "normal" colonscopy. I have to eat all my veggies well cooked and as a child, I loved raw vegatables. Believe me, your life isn't over. Far from it. Go and do. Treat yourself well.
@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.
@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!
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@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.
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3 Reactions@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.
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1 ReactionYes, 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.
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Like -
Helpful -
Hug
1 ReactionI’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!
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Helpful -
Hug
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