Hi All- I've had my J Pouch since 1998. Which for the most part has been amazing. Now 24 years later, I started experiencing slight leakage over the last several months. Does anyone have any suggestions? Or has anyone been through this as well?
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Leakage is sometimes a sign of pouchitis. If that’s what’s going on 10-14 days of Cipro or Flagyl will likely fix things up.
I've had my pouch since 1988 and over all I think it gets better every year. my biggest complaint has always been leakage. After all these years you think i'd have it figured out but no! It like everything else has gotten much better over the years ....but as soon as I think I've got it figured out, It happens. Most likely it is certain foods or could be a mild case of pouchitis, but its usually gone as fast as it came. I have noticed very salty food and too much dark beer is not a good idea. I believe this will be a life long search to narrow it down to complete elimination, which sucks because of the fear of never knowing for sure when you'll get it. goodluck!
Hi Jon,
I am a poucher since 2000. I can relate to the leakage. It can be be frustrating and depressing. I’ve had tremendous luck with Metamucil. It has made a huge difference in my bowel consistency. I also take VSL#3 twice a day. As Scott says though, it might be a sign of pouchitis and you might need an antibiotic.
Best of luck to you!
I have noticed some leakage issues lately which I thought might be due to simmering pouchitis, but I had my annual scope last week and my GI thought the pouch looked pretty good. He told me leakage comes with age due to the anal sphincter weakening over time and with age. I am thinking he is probably right. I have had a J pouch for 30 years - takedown was July 1992. I would say I have leakage now considerably more frequently than I did as a young J Poucher. I guess at this point all I can do is Kegel exercises and perhaps use a male tampon here and there.
i am 51 and never had leakage till my redo in 2016 with Remzi. I am thinking its due to the mucousectomy. My diet is not great either but i have imodium , lomotil, and powered psyllium husk and although they help, i still get some leakage at times. mainly when sleeping. I am worried as i get older its going to get worse. CT, what is a male tampon? lol
Yes, I wonder about the tampon too. And what is a mucousectomy?
@Pouchomarx posted:CT, what is a male tampon? lol
Exactly what I described to you in the other thread- gauze folded up to fit the contours of your rectum and soak up any stray leakage.
Marshmallows might help before bed?
Marshmallows? That's a new one. Can you explain more about this?
I just remember being told with the ileostomy that marshmallows reduce output.if you google "ileostomy marshmallows "it tells you.
Recent leakage…..
I have had my pouch since ‘18. Had many complications since. Still able to get along. However, recently I have been having some issues. I have been leaking at night. Has not happened like this since the beginning. On and off here and there. Much worse now. I do have an elongated pouch that creates bacteria problems resulting in daily cipro and Lamotil with rotation of Flagyl every three weeks. Also take Entyvio infusions every 8 weeks..
Any advice ???
@Taranus-saurus I have heard that some people get their pouches redone when they have been initially improperly constructed.
@Taranus-saurus posted:Recent leakage…..
I have had my pouch since ‘18. Had many complications since. Still able to get along. However, recently I have been having some issues. I have been leaking at night. Has not happened like this since the beginning. On and off here and there. Much worse now. I do have an elongated pouch that creates bacteria problems resulting in daily cipro and Lamotil with rotation of Flagyl every three weeks. Also take Entyvio infusions every 8 weeks..
Any advice ???
It’s possible that the Cipro and Flagyl are no longer adequate alone. After about 5-6 years on Cipro I had to add Flagyl, and the combination has worked very well for me for a long time. Another option is to try switching to a biologic medication.
You don’t say when you take the Lomotil, but I’ve found it most helpful to generally take it only at bedtime. That seems to work best on the disturbing nighttime issues.
I also get benefit from a high dose of VSL #3, but I’m lucky enough to have insurance coverage for it. It’s very expensive otherwise.
Thanks, I take Lamotil 2pills…….twice maybe three times if needed. Hit or miss !
Everything was very controlled for a while. I might be having a bad patch at the moment. VSL-3 I tried many years ago. Probiotics don’t work very well and, my insurance won’t cover it anyway.
I did notice some on here talking about acid output reducers. I have also read of some studies being done with Sulfasalazine. I did use that before the cancer and dysplasia. It did work. So, I might request trying that route. I have an appointment on JULY 1st.
He claims he is “maxing me out.” However, I read of all kinds of treatments on here. Not sure how revision works. Down time and procedure. And, I am fearful of waking up and told I have to have a permanent bag. Can’t find anything on the net…..
Cipro is 250mg twice per day
@Taranus-saurus posted:Cipro is 250mg twice per day
every time i was prescribed Cipro its been 500mg twice a day for 7-10 days
@Pouchomarx posted:every time i was prescribed Cipro its been 500mg twice a day for 7-10 days
Same with me when I was on Cipro. The only reason to start at a lower dosage would be to control side effects. In the past I took as much as 1000 mg Cipro and 1000 Flagyl daily, to control pouchitis symptoms. But I didn't have any side effects, other than sun sensitivity from the Cipro.
