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Thread: question on Incontinence with crohn's

  1. #1

    Default question on Incontinence with crohn's

    The main reason I've become interested in diapers has been from the fact that while I don't know when it started I have been going through a Crohn's flair up, sometimes when I think about how I've been feeling though has it caused a degree of bowel incontinence.

    When most people talk about the subject they describe it simply as you go without control and sometimes without feeling as well but when it comes to me sometimes I'm in and out the toilet far too often sometimes even if I can't notice anything it feels like something is coming out. Sometimes as well I can feel a sudden need to go but then start as soon as I get up to head for the toilet.

    Thing is though considering the nature of the illness how if happens can almost change each week. To making it ok to one to always misses the next. While the leaking feeling may have been going much longer itís making it hard to work out what's what.

    Last time I saw my gp I did mention it to him and he said that maybe due to the illness it might be too early to talk about it. Also I'm having part of my intestine along the right side removed later in the year as well so that could affect things. I'd rather not at this stage go through more testing.

    If honest I do worry a little about it because I don't know if it's anything I can expect to get better or not. All I can do now really is keep my diapers on and with me because without is so hard to manage sometimes now.

    Sorry for the long post btw and hope the wording isn't too bad ether.

  2. #2


    How long have you been sick? What medecine are you on? Don't you respond to them? Is that why you'll get a resection? Or is it due to a complication that you require a colectomy?

    Thanksfully, I didn't have to undergo any surgery yet since I only have a light/moderate form of Crohn's, which is bad enough! Anyway, if your gp remove the sick area, you should get better thereafter. The only problem is that Crohn's cannot be cured by surgery and it might come back later on another part of the gastro-intestinal track.

    As far as I am concerned, my gp didn't even seem to care when I mentioned him my accidents! After a few of those embarrassing ones I started to wear protection. It was convenient to be an abdl since I already had diapers home and above all I didn't mind to wear those. On the other hand, it took away a bit of the fun of wearing diapers as needing diapers is not the same thing as liking/wanting to wear diaper. Even if I'm not in a flare up right now (yay!), I still wear them as it's not a total remission. I find the best solution for me for day time is pads and mesh pants or pull-ups as it allow me to go to the bathroom the usual way.

    How often do you have leakages? As far as I am concerned it goes from 1 every 2/3 weeks to 1/2 per week. Luckily those happen most of the time when I'm home, right after I woke up. I didn't even have a single accident in college yet! I do pay a lot of attention not to eat before going out thought. Talking about eating, do you have a special diet?

    By the way, glad to know I'm not the only one with Crohn's who wore diapers for it as I always thought so. When I checked support websites and stuffs, they never mentioned people needing/wearing diapers. They would just say people have urges to go, that they always have to be near a bathroom, which is true. What troubled me was that they didn't mention the accidents you can't avoid, even if your near a bathroom, like you said: the sudden feeling to need to go, and it's too late as it goes out as soon as you move or the mistaking of liquid stool as gas,... It's like it's taboo.

    Also, I understand how you feel about not wanting to go though more testing. I was so fed up that at some point I gave up and quit going to see my gp, stopped taking my meds,... until next flare up.

    Take care of yourself, be optimistic, it will eventually get better, it always does!

  3. #3


    I must have had this illness for 10 years or so now. All started when I was still in school but from 2003 to last year it didn’t affect me at all. This flair up I’m not sure how long it has been going on for fully because how I felt and how the body reacted that time and now was very different. I started treatment around the summer of last year.

    As for what I’ve been taken, so far only thing I have been on is Pentasa because when I was a kid they worked very well. This time however they didn’t touch it and some days would even make me feel worse. It’s hard to tell though when the side effects and the symptoms it treats seem to be the same lol. Sadly I can’t tell you much about the operation itself because I don’t know the location of where it’s active. All I know if I feel it along my right side. It’s complicated because there is scaring but also a fistula in the middle of my scarred area.

    Sadly when it comes to leaks they are a very common thing. It seems at the moment that side is almost daily. It’s like ether I feel myself have a small bowel movement or other times like I can fully clean after a toilet break and then an hour or so later feel a bit sore and when check look like I never cleaned in the 1st place. Sadly full on accidents are often a once a day and it even doesn’t have too be too liquid to be that way ether. For now pull ups would be a very bad idea it seems.

    Diet hasn’t helped one bit so far. I’m not on anything special but I have been playing around with swapping out fizzy drinks, reduced dairy and trying to overall eat less fatty stuff and at better times has had little impact I’ve found on bowel movements but I’m sure it’s worked as best as it can because other then feeling tired at random (slightly anemic) how I feel in myself has greatly improved. Before this I was just going into fevers and bad bloating every moth for weekly periods. If it wasn’t for mess, this would be the best I’ve felt in a long time. Guess that’s it for answering questions on how I am.

    I doubt that we will be the only guys or girls that have done something like this but your right in regards to support there is very little out there on this side and doctors little interested as well. I’ve mentioned it to them before and ether the topic remains not talked about in detail or I’m just told that I shouldn’t be having them. I know however that there are plenty of people from other support sites that won’t talk about this but they would act the same way to try cover up being ill, just using spare cloths as apposed to diapers. Diapers and incontinence seem to be taboo subjects but if your carrying spares and supplies everywhere like someone like us you’re still going to look like something’s wrong and hiding it.

    This has been a long post so sorry about that but hope it answers your questions. Also I did get your message but not the right level yet to reply.

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