Evening all. First time posting. I have Crohn's disease and I'm 27. I had an initial surgery for UC back in 2007 when I got my j pouch only to discover later that I have crohns. I've been reopened once for a blockage caused by scar tissue and hospitalized a second time for a blockage but managed to avoid being cut open again. My constant problem seems to always be incontinence at night. It seems to come and go with severity and was somewhat managed up until a few months ago. Now it happens every night. Sometimes it's a little leak but usually it's almost half a bowl movement. I've tried fiber tablets, fiber powder, immodium, kegels, and some kind of orange powder that I can't recall the name of. Nothing seems to work. I'm miserable and ashamed and don't know what to do. I am afraid to go to sleep or, heaven forbid, doze off on the couch with my new girlfriend. During the day I have no problem holding my bowel movements. I'm not currently on any medication besides Prilosec for acid reflux/heartburn problems because my insurance from work is poor and I can't afford really much of anything. I will find a way to see a doctor but with my lack of success in the past with this issue it feels hopeless and a waste of money. I read some stuff on pouchitis and part of me feels like that's the case but aside from some recent weight loss and random frequency problems I don't have issues. Please help!
For me that's the key sign of pouchitis. Have you ever tried a course of Cipro or Flagyl? They are both inexpensive.
I recall taking flagyl many years ago before my surgeries but neither flagyl or cipro have ever been mentioned by doctors when I've come to them for my issues with incontinence.
Have you tried timing your meals so your pouch is empty at night? I have issues sleeping more than an hour or two if my pouch isn't empty or mostly empty at night.
There are other tricks that can help with nighttime incontinence or leakage, but ruling out pouchitis (by trying the treatment) seems easy, inexpensive, and potentially very helpful.
I try not to eat anything after around 7 when I get home from work and have dinner. I'm usually asleep by 12 or 1. As often as I seem to go I would hope that by the time I go to sleep my pouch would be empty
Have you tried taking antispasmodics at bedtime? I always take levsin at bedtime. Of course eating patterns can effect things as well if you are consuming large amounts of foods near bedtime.
Also you need to describe the issue a little better- are we talking about spotting and stains or massive dumps into your underwear? Because if you are just slightly incontinent and not eating a lot it could be a spasmodic pouch and it also could be some mild pouchitis. If we are talking massive dumps could be a different issue.
I've never taken antispasmodics for this issue. Sometimes it's mild spotting (still enough to wet outside garment) and sometimes it's as much as a full dump (or at least close, enough to need a shower after)
Try taking levsin at bedtime and see what happens. I also would not rule out untreated pouchitis- but if it has gotten to the point of massive dumps you have really let it go.
(Jpouch 10-2014)I watch what I eat, low sugar and dairy, don't eat after 7, eat small meals,take limotil, and I assume it all helps BUT I have severe problems with incontinence that I didn't used to have. I have to wear a diaper at night and pads throughout the day. And sometimes have to change 2-4 times a night. I have spasms and urgency but sometimes very little output when sitting on the toilet, then when I lay down, it oozes out while I sleep. I always treat with flagyl and ciprofloxacin for 10 days and its instantly better. I take vsl#3, between hours of taking anti biotics. Once I stop the antibiotics the urgncy and incontinence returns. I am also on Humeria. I hate how I feel on the antibiotics and know that they won't work forever. I have a hose attached to my sink that helps wash the area otherwise I would have to shower many times a day and night. I have to put ointment on the area as it is irritated and chafed from seepage and constant wiping. At this point I am going in for a scope with a surgeon who will diagnose the cause to see if anatomical. Would like to know why I always have pouchitis when not on antibiotics. Seriously thinking that an external pouch would give me better control over my bowels. Though I had a host of problems with my temporary one. It's almost as bad as before surgery.
Anyway I feel your frustration and I hope that you get better!
Dogtired, a number of us have been on antibiotics for very long periods, over 10 years in my case. I don’t need them to work forever, just long enough.
Dog tired I have been on antibiotics for almost 25 years. Rotating between different antibiotics is the key. They still work, but I am dependent on them. They only need to work until I am dead, which is less than forever.
My advice for incontinence is to wear a 4" X 4" non-sterile (much cheaper) cotton gauze which is highly absorbent and will prevent staining of underwear or bedding. Works well for minor leakage. You can buy them in packages of 200. I wear them all the time. Also, try not to eat after about 6pm if possible, or eat a smaller dinner portions. That should help.