Skip to main content

Hi all! My takedown surgery was postponed due to a root canal until Feb. 25th (originally scheduled Jan. 7th). I have been waffling and wavering over the surgery and the postponement has not helped that, I'm afraid. Confused One of my biggest concerns is leakage, esp. at night since it seems that nighttime leakage is more common. My surgeon says that nighttime leakage only occurs in about 10% of patients, which seems like good odds. However, it seems to be a hot topic of discussion on the site, so I am wondering if the actual incidence is higher than that. Having no leaks with my ileostomy now and trying to figure out what my chances are that that will continue after the takedown....Do you all think 10% is a correct percentage of J-pouchers with nighttime leakage? Thanks.
Original Post

Replies sorted oldest to newest

In the three months since takedown, I've had leakage exactly twice.

 

The first time was the day after takedown, in the hospital, before my bowels were fully awake.  This did not appear to be primarily stool, but rather other fluids that I assume were surgery related.  It did not repeat.

 

A week or so ago, when I woke in the morning and went to the restroom, there was a very small amount of formed stool in my underwear.  It wasn't enough to wake me, and I wasn't even aware of it until I dropped my drawers.  I had some righteous gas that morning, so my best guess is that I let loose a fart in my sleep.  Farting off the toilet is not a skill I currently possess, but if I don't snack too late at night, evacuate fully right before bed, I generally can sleep until 7 am or later without needing to get up these days. 

 

Most nights, I eat a small serving of yogurt, the really, really good kind, not the basic supermarket stuff, usually plain, sometimes with a small bit of honey, just before heading to bed.  This seems to slow the overnight gas production, and I figure the protein is good for me and whatever probiotic beasties survive the journey through the system don't hurt. 

This site is fantastic as a resource for the range of what can go wrong, and for individual experiences and strategies. You can't get useful statistics here, though, unless you run into someone who's read a published study and quotes it. Folks with no issues (i.e. the majority) don't spend much time on support sites. That being said, I only have leakage when pouchitis is poorly controlled.

I don't know about the 10% but leakage is a continuing problem for me. I have had my j-pouch for almost 7 years and do not have pouchitis, however my rectal cuff does show inflammation when I am scoped. I wear a pad for protection every night.  I have been using Tylenol #3 before bed which helps but lately seems to be less effective.  I am currently trying to get paragoric (opium tincture) but am having trouble with my pharmacy filling the prescription. (hopefully this will be resolved soon).  One other thing I recommend you take every day is the probiotic VSL#3DS.

I don't think worries about nighttime leakage is a go season not to reconnect. Like anything in life, it is a risk by for vast majority it is not a major issue. I had more issues with night leakage of my temp oleo than I have had with my pouch, and I have unconvinced due to anal fistula surgery! Biggest triggers for night in intense for me are untreated pouchitis. LOTS of alcohol (I got my pouch while in college), or huge amounts of insolvable fiber - like a large movie popcorn or a plate of raw veggies without also eating protein and starch and/or taking immodium and Metamucil to bulk things up.

Good luck!

Thanks for the replies.

ATX Guy - interesting that you can eat yogurt right before bed and still sleep through most of the night. That's great.  I have a lot of gas production at night, fills up my bag, so maybe the yogurt might be a trick for me, too.  Is yogurt usually something that can cut down on gas production? 

 

dg tracy - I totally get the fear.  I am sending you positive thoughts and wishes for your takedown surgery on Monday.  I am hoping that you have a really positive result and speedy recovery!

Had illeo removed 7 years ago.  Have had pouch leakage since.  I use guards for men which have been me.  .very successful for me.  Occasionally accidents do happen.  Balmex has been my choice for skin irritation.  Wore ostomy for 5 months,  Had 7 accidents during that period but once I was doing all changes myself, had no accidents.  I would think very hard wearing an ostomy vs the J-pouch.  Have tried many things, non seemed to have much success.  Hang in there.  Don't give up.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×