Pressure and Leakage with JPouch & Fistula

HI, KMBR108.  I am sorry to hear about your issues.  I know many others that can offer good info about your situation.  I am sorry to say that after having a leak and a successful pouch redo, that any leak is not good.   There may be varying opinions of treatment options, but I am not yet convinced that a leak or fistula can be successfully treated, long-term.  Happy to hear from others who have had leaks treated successfully, though!  You deserve better.  Again, I am sorry.

KMBR, you might just have pouchitis, which is usually easy to treat. You will need to find a doctor, though, preferably a knowledgeable gastroenterologist. Another possibility is a C. Diff infection, for which you'd also need a doctor. Ordinary gastroenteritis would generally have cleared up after two weeks.

You could try a good probiotic, like VSL #3, in the meantime. It might help a bit. Good luck!

Thanks for the input you two.  I appreciate it!!!

I agree with both maybe if it is indeed ... pouchitis.... and I would highly recommend VSL#3 DS which is a medicinal probiotic and can be obtained through prescription from your gastroenterologist! It's worked like a dream for me!

good luck!

Janie

Thank you Janie! ��

VSL #3 (single strength) is available without a prescription. It's expensive (so is the Double Strength), but it could be started while that doctor KMBR is looking for finishes medical school (or at least until he/she has a schedule opening).

Hi,

The one time I had pouchitis, my symptoms were leakage day & night, runny stool, a dull, very low backache, greatly increased frequency and after a couple of days some bleeding. Neither Pepto Bismol nor Immodium helped at all. I was given Flagyl & Cipro, which quickly turned it around. You could indeed have pouchitis. I would think that if need be, you could go to the emergency, explain your circumstances,  and they'd take care of you or connect you with a doctor. If you're leaking a lot you could dehydrate.

Rose

An urgent care center would be much less expensive than an Emergency Department. There's a chance of getting a prescription for pouchitis, especially if an appropriate article about pouchitis is brought along for reference, but also a risk of going home empty-handed. There's a high probability of the doctor never having heard of pouchitis, and doctors respond in a variety of ways when they don't have a clue what to do.

Those are both good ideas. I appreciate you taking the time to respond. I'm feeling a little better, but still not 100%. 

Hi again,

Scott has a point which did occur to me. An urgent care center might provide a script, which would be of great help. His idea of bringing an article about pouchitis and how it's treated to provide background for the doctor is also excellent. 

The emergency room would definitely be expensive but I'm thinking they would have access to a knowledgable G.I. doctor who would know what to do. He might get you going on meds and have you see him in his office in the following days. Take care, Rose.

E.R.  might have . G. I. available, however would caution that if not, they may want to do unnecessary and costly testing.  I have been through this after initially being diagnosed with UC and arriving at the E.R. malnourished and dehydrated which led to me not being myself.  This led the E.R. doctor to want to do a spinal tap because she was thinking something neurological.  We of course declined.  Funny because I also arrived at the hospital attached to TPN.  So as Scott suggested, bring information with you.  I might consider the Urgent Care as well and then follow up with finding a good GI doc.  

not sure where you were treated before but it is quite common to address a fistula especially with a jpouch aggressively ie with a biologic. patients have successfully closed their fistulas with this treatment, doesn't work for every patient but it might for you. hopefully you are well on your way to securing an appointment with a good IBD doc, not just an ordinary gastroenterologist. you might ping the local Crohn's and Colitis Foundation for leads on docs.

Thanks everyone for your input. I felt as if I was doing better, but now my fistula has stopped draining (it always did drain, just something I got used to living with), but now that it has stopped draining it's starting to ache. This has happened once before and it swelled up really bad (my fistula is on the lower part of my labia) and I was in so much pain I couldn't walk. I ended up in the ER. Apparently it was abscessed. The ER doctor had no idea what a  JPouch was and didn't know how to help me. Btw, my fistula is stemmed from my pouch. Luckily for me the blockage I had in my fistula busted open and it immediately started to drain white pus. The pain I had was immediately gone. I'm scared this is going to happen again. I think I'm going to a clinic tomorrow to see if I can get some antibiotics. I'm hoping it will help. First, it was what I thought was pouchitis and now I might have an abscessed fistula. Maybe they're linked somehow. I'm sorry if I rambled on. I hope this post made sense! ��

Hot soaks might help it open up. Once it's blocked antibiotics usually can't help, unfortunately. Good luck!

Thank you Scott! I was just getting ready for a soak now! :-)

Btw, when I'm not soaking in the tub, would a heating pad be of any help?

Dry heat doesn't seem to have the same effect, as far as I know. I hope it opens up without much discomfort from the pressure. As you discovered, the ER doesn't have a lot to offer. A standard abscess can be lanced to relieve the pressure and let it drain, but sloppy fussing with fistulas can just lead to more trouble. Have you ever considered a seton?

A heating pad over a moist washcloth will provide penetrating moist heat.

Jan

Thanks Jan!!!