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!!!

Scott, I've had a seton, but my last rectal surgeon told me I didn't need one anymore since the inside of my fistula is lined with skin, whatever that means. This is the only the second time I've had a problem with my fistula in the last ten years. I just hope I don't continue to have more reoccurring problems now. I hope this isn't too much info, but I just used the restroom and now my bum is aching!

It's not too much info. The fistula is epithelialized, but it's still a narrow passage, and it probably just got clogged.

Just an update....Ended up going to the ER today.  The doctor I saw had never heard of a JPouch, so I had to explain it to him and why I have it. He was going to prescribe some Keflex, but he said that was more for skin infections,so I mentioned to him about prescribing me some Cipro and Flagyl and that is what he did. He gave me 500 mg of Cipro and 500 mg of Flagyl. He also prescribed some 600 mg of Ibuprofen and also gave me Norco for pain. While I was in the ER my fistula started to drain some and so that has helped with the pain. So the pain is better and I'm hoping all these meds work so I can be back on track. I truly appreciate all the input everyone has given me. I am so thankful I found this support group. I would be lost without it. 

I'm glad you're feeling a bit better, and that you ran into a doctor that didn't get defensive when out of his comfort zone. Don't stop the hot soaks, and I hope you get good results from the antibiotics. Go easy on the ibuprofen, which can sometime make a J-pouch unhappy.

Thank you Scott!!!

kmbr108 posted:

Hi Everyone,

I tried looking up my symptoms on this site, but to no luck.  I thought I would post my situation to see if anyone has experienced what is going on with me.

I was diagnosed with UC back in 1995 and received my JPouch in 2000 due to my large intestine rupturing.  For the most part I have been fine with minimal problems for the past 17 years.  I do have an anal fistula that leaks on occasion, depending on what I eat or if I don't take any Imodium for a day or two. 

My problems is, for the past week I have had leakage problems from my fistula even when I take my Imodium and now I feel as if I have a pressure where my rectum used to be and a constant urgency to use the restroom.  When I do go to the bathroom if feels as if it's hard to defecate.  It has also been runny as well, almost like liquid.

Has anyone had this problem or does anyone know what it could be? I'm hoping it's just what I've been eating, but I really don't know. I've recently moved to southern California and have not yet found a doctor.  Any responses would be appreciated!.

Thanks Everyone!!!!!

 

i have the same problum i have a kink

Are they able to correct that David?

i have to go back 9 11 17 thanks km will let you no dave.

Good luck & prayers to you Dave!

I'm sorry. I'm going through the same thing.yesterday After surgery to do anal stretch, pics showed alters on j pouch .Dr Repairs a rectal vaginally fistula which came busting through my vagina wall a week before. 3 one. Lots of leakage and burning along with uti. Been on antibiotics 2 month diff kinds but they are not helping. Dr not sure this can get better. My pouch is very tight. Hardened. I may try Flagyl Cipro and vsl 3 ds. Idk I'm lost as well. What foods do I eat, avoid?

Also have high blood pressure due to pottisum levels. Controlled by more meds.

I'm able to tolerate most foods, but I do stay from foods that don't digest well, such as corn and cabbage, anything with a skin on it. I am back on Cipro & Flagyl because I was off of the antibiotics for three days and the abscess on my fistula came back. I will probably have to stay on the meds until I can see my doctor, which won't be until September 27th. She out of the office because she had surgery. The side effects of the antibiotics are kicking my butt though. It makes it very hard to go to work. I'm afraid I'm going to get fired if I don't go. All this is very stressful and scary for me, which doesn't help matters.  

I hope all works out for you Marcitp! You're in my thoughts!

Thank you. 

iam going to see a anal rectal dr next week no more grastol dr. dave

That's who I was seeing. A great one too in San Francisco. Unfortunately I moved and no longer see her. Good luck!

NO GOOD NEWS JPOUCH ISANT WORKING VERY GOOD TAKE DOWN SOON DAVE,

I'm so sorry to hear that Dave! I pray that my pouch continues to do what it needs to. Nothing but good wishes being sent your way. I hope all turns out well. Thanks for letting me know. Hang in there!!!

TAKE DOWN 9/ 26/17