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Hi, I'm new on here...I am a 57 year old female who just found out last year that I had Ulcerative Colitis. I had my entire colon remove last November. In February another surgery to make the j-pouch and then in May of this year was the take down. Was diagnosed with pouchitis in July, and I am still on antibiotics, taking the VSL#3...but I seem to still have some night time leakage? Can anyone help me and tell me why? Back in July when I started with some leakage during the night was when they said I had pouchitis after a test....once in awhile I am still having leaks.

Plus, I never seem to know what types of foods to eat. Can you all eat anything you want?
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I feel I'm a more extreme case than most. But for me personally, I get leaks if I sleep too much on one side. Laying on my back seems to yield better results. Nothing is worse than the nights you wake up and your entire bed, clothes, and torso are covered in your own output.

As for eating, I can eat whatever I want. I typically pay for it later. Like I said though, my case tends to be more extreme than others. Bananas are my best friend; I tend to eat one every single morning. It doesn't always work, but sometimes it starts me off well until it's lunch time. Avoid fried foods and vegetables that cause gas. It's all about experimenting. You have to practice and see what you can and can't tolerate.
Hi Pat! I had my J-pouch surgery in 1997, am 56, but just started having a real problem with nighttime leakage. I was just diagnosed with Crohn's and have yet to start treatment so I'm going to attribute it to that.

Previously my meds were doing a pretty good job of controlling my nighttime bowel movements. I take Lomotil and Tylenol #3. The codeine in the Tylenol, which constipates "normal" people, let me sleep most nights without having to get up to use the bathroom. For me, ever since my takedown, I've always had diarrhea. The Tylenol #3 doesn't have any effect on the consistency of my bowel movements. I've not had luck through diet improving that. Everyone is different.

Your pouch is still "learning" too. It takes a while for it and you to adjust to your new situation. I remember not having good control in the beginning and worrying it wouldn't be any better than before the surgery.

You'll find what works for you I'm sure! Just give it some time. Best wishes!
quote:
Your pouch is still "learning" too. It takes a while for it and you to adjust to your new situation. I remember not having good control in the beginning and worrying it wouldn't be any better than before the surgery.


I too suffer leakage at night (colon out July, takedown October). FWIW, just turned 60. I am up most nights 3-6 times. I seem to awaken just as the sphincter muscle(s) start to relax and most times make it to the bathroom before there is anything on my boxer shorts. Sometimes not though, I have been through 4 pairs of boxers in a night. My surgeon suggested sticking a cotton pad rolled up, up my backside. The theory being that the 'irritant' keeps the sphincter active and is enough to prevent it relaxing. Haven't tried that yet, but I will.

I guess my question is (and given the quote above from Texgal58), what sort of time period am I looking at before I can string more than an hours worth of sleep together before having to get up? I do try not to eat after about 1800 (not always successful), take metamucil 3-4 times per day, and use lomitil twice a day. I know it's only been a couple of months since takedown and don't get me wrong, I hated the bag so this is much better, but I am extremely sleep deprived at the moment.
Kevin, it's been 17 years so I may not be 100% on this but it was probably about a year before I was only going 4-5 times a day. Remember, everyone is different. Diet worked well for me for a time, using a Benedryl at bedtime has also been effective, I've had off and on success with Metamucil and Peptobismal, switched between Lomotil and Immodium and last year added the Tylenol #3 at bedtime with 2 Lomotil. My Dr has suggested tincture of opiate, but that sounds kind of scary.

My leakage was just occasional until the last few months when it's become so unpredictable I've started wearing a Depends at night which I HATE. Stress, for me, seems to have played a big part in my digestive issues this year and I wonder how much it may have played in my recent diagnosis of Crohn's.

I hope others have info to help. Just hang in there and keep trying. I know I felt so much better after have my colon removed and when I finally recovered from all that surgery. That takes a while too.

Here's to a better 2015!
I sometimes have leaks of soft stool, but never when stool is liquid. Wierd. Seems like once a day have a 1-2 hour window with leaks, so I visit bathroom frequently during this time, and of course hope I'm at home. But, recently noticed that when I use a good amount of Ikex paste, more than a pea suez drop, and also tuck a make up oval pad up there that I go a long time without leaking or having BM. Like 4-7 hours- great for night! Thinking - does this relate to what KOB's surgeon suggested about tricking the sphincter muscle into working by being irritant. Anyway, try it and see if it works for you! I'm thinking this is working for me and will continue to keep track of how it's working. Besides, the Ilex paste soothes any irritation that comes up occasionally. Good luck all!
Hello,

I had night time leakage nightly, and sometimes more than once during the night, for over 5 years after pouch creation. Then, for some reason, it just stopped for the most part. I did not change my eating or medication. My surgeon thinks maybe my sphincter muscle got stronger and that my pouch just matured.

I maybe will have one accident every four or five months or so, usually if I have taken something to help me sleep. I still get up at least one time every night to use the bathroom, but I go right back to sleep.

My pouch is 11 years old now. Maybe just give yourself more time--even though I know the wait can be frustrating.

Becky

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