Hi. I had a total colectomy & formation of a j pouch with a loop ileostomy 6 weeks ago. I am having tremendous discharge into my j pouch already. It was mucus at first-like most people experience- but it didn't slow down - it has only increased. It is like mild smelling diarrhea and it leaks into a pad I wear literally all day long- sometimes in big gushes. It is embarrassing & uncomfortable. My surgeon said he thinks it is a diversion from the ileostomy. I also still have rectal pain & aching that I am forced to stay on a pain regimen of ibuprofen 800 mg & Vicodin 5/325 to control. My surgeon says it might be nerves or a pulled muscle. It also may be a small fissure . Did anyone else have these problems ? Is the fact that this stool leaks out an indication I will be incontinent after they so my second surgery? I am so depressed about it all ...I am 35 with 3 young children & I don't feel like I have time for all this debilitating suffering....
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Also prior to this surgery I had uc 20 years but I never needed all this pain medicine. I had 5 major flares but the rest of the time my life was pretty normal so this quality of life is worse for me now than it was with uc!
I'm 7 weeks out from my pouch construction & have similar issues with a lot of mucous, though I generally don't have incontinence (twice while sleeping).
I have also on several occasions passed some stool, particularly first thing in the morning if my ostomy bag has gotten very full over night.
Last week, there was a morning where I spiked a fever after passing a significant quantity of stool and passing a LOT of mucous during the day. My surgeon did a flex scope & ran blood labs last week to make sure nothing in the pouch was causing excessive mucous or the fever, and didn't see anything. He also didn't seem overly concerned when the labs came back normal & the scope was clean. I was fine the next day.
It's annoying more than anything, but basically any time I empty my bag or urinate, I pass mucous.
C'est la vie, I guess.
I have also on several occasions passed some stool, particularly first thing in the morning if my ostomy bag has gotten very full over night.
Last week, there was a morning where I spiked a fever after passing a significant quantity of stool and passing a LOT of mucous during the day. My surgeon did a flex scope & ran blood labs last week to make sure nothing in the pouch was causing excessive mucous or the fever, and didn't see anything. He also didn't seem overly concerned when the labs came back normal & the scope was clean. I was fine the next day.
It's annoying more than anything, but basically any time I empty my bag or urinate, I pass mucous.
C'est la vie, I guess.
So you are continent of your leakage ? Do you consciously hold it in, or unconsciously & it just comes out when you sit on the toilet? If this is an indication I may be incontinent with the j pouch once I am fully using it, then I am wondering if I should go the BCIR/Koch pouch route......I cannot see a life of incontinence....
I can tell when there is mucous that needs to be evacuated--it feels like a slight pressure on the anus. I don't generally need to concentrate on holding it in, but simply sitting on the toilet and relaxing causes it to slide out.
From what I've been told, the mucous is much thinner than typical j-pouch output and mucous leakage isn't indicative of later incontinence.
From what I've been told, the mucous is much thinner than typical j-pouch output and mucous leakage isn't indicative of later incontinence.
I can tell too but I can't always make it to the bathroom before it leaks out- maybe 50% of the time it leaks out & 50% I evacuate in the toilet....that never happens to you- the leaking- other than at night? How often do you leak during the day? I leak hourly..sometimes more.
Yes, only twice at night (so far?)
But it's not supposed to mean anything for performance at takedown.
But it's not supposed to mean anything for performance at takedown.
I've passed mucous as many as 13 times in a day, but usually about half that many times.
I am almost 6 months out and have been mostly continent since my takedown, even though I have had at times very loose, almost diarrhea and was totally able to hold it. The only times I've not been continent is when I took medications with codeine, or other relaxants, which put you to sleep and relax the anal muscles too.
Also, I had a lot of mucous, then more stool coming out during my time with loop ileostomy. They assured me it didn't mean my pouch would be leaking, and it had been tested at 3 week mark to see if viable. Again, I was able to control it and felt the gas buildup that sent me to bathroom, but was not on pain meds. I do think that your pain meds are contributing to your lack of control, though you and your doctor have to figure out if anything else enters in.
Good luck! I know it's a long time in a challenging journey, but hope by the 6 month mark you feel as good as I do! LjZ
Also, I had a lot of mucous, then more stool coming out during my time with loop ileostomy. They assured me it didn't mean my pouch would be leaking, and it had been tested at 3 week mark to see if viable. Again, I was able to control it and felt the gas buildup that sent me to bathroom, but was not on pain meds. I do think that your pain meds are contributing to your lack of control, though you and your doctor have to figure out if anything else enters in.
Good luck! I know it's a long time in a challenging journey, but hope by the 6 month mark you feel as good as I do! LjZ
What about pain issues 6 weeks out? I was doing great weeks 3-4 - walking every day - caring for my children with just occasional rectal pain... Then it ballooned to much more intense throbbing - especially bad in am- moderate in day...it was a discouraging step back - I just don't understand what's causing it ...,