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zhtfreak
(@zhtfreak)
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23/09/2018 2:44 pm  

Hi all, 

 

I'm a little bit ashamed to ask this question. I'm fine with being able to use the bathroom as normal pretty much all the time, but even all these years after my ileostomy reversal I still sometimes have issues at night. Sometimes I can go a few weeks without any problems, and then I can have several days in a short amount of time when I wake up to find that I've messed the bed, which means I get to do laundry more often than I'd like. Kind of hard to do that when you have to scrounge up quarters all the time. lol. 

 

I live alone, so most of the time no one knows about it, but I still feel like it shouldn't be happening since I'm fine most of the time. I'm always a little bit upset with myself when I wake up in the middle of the night and find that I've had yet another accident. What if it happens when I'm staying at someone's house, or, (shutter), what if I get married someday and what would my wife think about that? 

 

I suppose it's a little bit like waking up to find that your bag has leaked. I think that only hapened to me once and I don't remember much about it. I used to wake up with a ballooned bag all the time, so had to wake my mom up to empty it. 

 

I've tried staying up late enough to get a last BM in before I go to bed, or trying to make myself get up to go, but I can't pin point a certain time when I end up making a mess of myself. Sometimes I'll get up and surf the web or watch YouTube videos for 2-3 hours in the middle of the night because I know I'll have to go even though I'm tired. 

 

any advice?

Bian


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VeganOstomy
(@veganostomy)
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24/09/2018 1:49 am  

Is the bag really full when these accidents happen?

Do you notice a lot of gas in the evebings (full bag with little output in it)?

Does this happen after you've been wearing your appliance for a while or has it happened with a relatively fresh appliance on? 

Do you notice any patterns when this happens? Like eating a certain food or after a day of sweating? 

Let's see if we can troubleshoot things because there's always a solution :) 

 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
(@dona)
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Posts: 647
24/09/2018 12:14 pm  

Hi Bian,

Just to be clear here. You have had a reversal right? no longer have as ostomy or a bag. And you are now getting leakage in the night from your rear end? Is this what is happening?

If this is the case , maybe restate you question here so someone can hopefully have some advise for you. Sorry I can't help you more!

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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VeganOstomy
(@veganostomy)
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24/09/2018 10:45 pm  
Posted by: Dona

Just to be clear here. You have had a reversal right? no longer have as ostomy or a bag. 

Woah, now that I re-read the post, I believe that's what's happening but would like a confirmation before I write further thoughts. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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zhtfreak
(@zhtfreak)
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Posts: 27
26/09/2018 6:03 pm  

Yep Dona is correct. Guess I didn’t make that clear enough. Oops :)


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VeganOstomy
(@veganostomy)
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27/09/2018 10:27 am  

Zhtfreak, I'm assuming you were given a j-pouch, correct? I know that incontinence is something that can happen with j-pouches, and some people will wear adult diapers because of it. I do believe it goes away or at least lessens considerably in frequency over time, but I've also read that some people continue to have incontinence even decades later. 

This may be something you'll want to speak to your surgeon about. Depending on why it's happening you may be able to make some changes to reduce the incidences. Thickening the stool or taking something like Pepto Bismol are things I've read can help (although, I don't recommend changes unless your doctor knows).

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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dogtalkerer
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Posts: 71
27/09/2018 3:56 pm  

your message was clear, I got it the first time, just way too easy to read stuff too fast and miss a small comment.  did you have sphincter saving surgery?  I was almost a candidate, but the surgeon thought there was just  a bit too much tumor damage.   from what he told me, this kind of thing  can happen with sphincter saving surgery.

if this is so,  wondering if a  nightly enema might be a solution, even a partial , give some spare room in the rectum?


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LK
 LK
(@dlkfiretruck)
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Posts: 481
28/09/2018 9:23 pm  

I also had rectal incontinence just before my Ileostomy surgery.  It is unpleasant, but it happens.  Have you told your doctor? He needs to know about it in case there is another issue?

Linda


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DngrsCrvs
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Posts: 5
30/09/2018 11:14 am  

Bed pads. You can get disposable or washable. My late husband used the washable ones and most of the time his sheets were clean and dry. 

Bed pads


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