Watery Leakage Every Morning - Seeking Advice for Ileostomy-related Issue

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tello

I have a question that I am hoping someone can answer for me. I first had a "straight-thru" (small intestine hooked directly to anus) sub-total colectomy done in 2009. This didn't work out for me because I was having 15-20 bowel movements per day with lots of "butt-burn." I decided that I had to have an ileostomy and had it done in Nov. 2010. Actually, ever since the sub-total colectomy, I have a "morning leakage problem." When I get up in the morning, I am completely dry but within an hour of being up (sitting on the couch watching the news), I start feeling wetness on the back (top of butt crack) of my pajamas. Sorry if this sounds really gross, but I really need an answer to this problem and so far, 4 doctors say, "I don't know what that can be." The liquid that comes out seems like water because: it is colorless, has no smell, and dries up after a while (no stain). The doctors ask if it is coming from the anus. I tell them I am a little wet there, but there is no leakage on my underwear at that spot; I just end up with a big circle of wetness literally at the top of the butt crack, and it is embarrassing! One doctor visually examined me there and said he can't see a fistula or anything, so he thinks the liquid is coming from a sweat gland. I am very skinny, always cold, and never sweat unless I exercise hard, so I feel it can't be coming from a sweat gland.

Please, does anyone have any ideas or any advice?! This is driving me crazy. It is hard enough just to deal with having an ileostomy; I don't need to have wet pants every morning!

Thanks so much!

Tello

mooza

Hey Tello, I find I get this mucus stuff too. Yeah, no bum but it gets out? All I was told is Crohn's patients don't heal very well, but that's my condition. Not sure what yours is! Yeah, pain in the arse for sure, mainly when I squat down. It's been over 3 years, arghhh.....

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tinmlizzy

Hey Tello, sorry to hear you are having so many problems and hope someone can help you get this sorted out. I actually had the same surgery in March last year (2010) and have been able to sort out most of the problems. One of the problems was too many bowel movements in a day and night, also constant diarrhea (sorry about the spelling). However, my doc sent me to speak with a dietician who was able to help a great deal. I cut my liquid intake to about 3 glasses a day, no fizzy drinks, no drinking from a straw. I was also given literature on the results of various foods I eat, some I have removed from my diet and others I have introduced to my diet. I think this info is available on the internet, also on the Mayo Clinic website. I found urine was leaking out and I got one UTI (urinary tract infection) after another. The doc explained that when a large bowel is removed, the bladder takes on a life of its own and moves around, so urinating was and still is sporadic. I used estrogen vag cream for a year and the UTIs have gone away. I will add it has taken me a long time to adjust to my new system but must add that after years and years of suffering, I finally feel better (healthier and free). I ask you to be patient and truly hope you can get your problem under control....good luck.

Past Member

Hi Mooza, you're sure right about us Crohnies. We don't heal too well. I've been healing there in the butt for years, leak pads, you name it. Lol, you crack me up girl. I love reading your answers. I always cheer up when I read your post. And Tello sounds like to me it could be a gland or your bottom could be leaking somewhere. I do hope you get it sorted. It can be a real pain finding wet patches in the rear. Take care, Ambies. xx

cms1230

I had a permanent ileostomy over 4 years ago. I still wear mini-pads in my panties in case I have a leak. Sometimes it's pink, sometimes it's just a smear on the pad. I went through a year of procedures to cauterize the anal opening, so it was very well closed. It doesn't matter if it isn't hemorrhaging. My doctor said it's not a problem if it leaks a little.

 
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Kat

I have dealt with the exact same problem going on for 3-4 years now ever since I got my 1st colostomy and now am in an ileostomy. I would develop sores and almost little tears around the area and subsequently they would weep and get larger and very painful. Lots of cleaning around the area made it worse at times. Use of an antibiotic ointment helped at first and was given something called mud which contains tar has worked wonders. Am able to get at a compounding pharmacy. If you need more info let me know and I can get you further info. Best of luck.

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