Hi, I was just diagnosed with IgG4 pouchitis last week by Dr. Bo Shen. Has anyone here been diagnosed with IgG4 pouchitis? What is your treatment plan and what type of diet do you follow? Any other suggestions to keep it in remission? And does anyone know if it is worth going to a permanent ileostomy if it means avoiding awful drugs?

designOOps: I was dx'd by Shen with IgG4 pouchitis, but am not specifically being "treated" for it - I'm on canasa (cuffitis) and tindamax (fistula).

There are several good threads on here re. IgG4 - the original is entitled "Dr Shen: IgG4>pouchitis": http://j-pouch.org/eve/forums/...51071921/m/161106405. If you haven't had a chance to read this yet, it contains quite a bit of information that I hope will help you.

Hi NancyAnn,

Thanks for your response. So you don't need any kind of antibiotics or steroids to control the pouchitis? Is Tindamax a kind of antibiotic?

If you have a fistula, does that not mean it's Crohn's or does Dr. Shen say otherwise?

Thanks,
Tina

Tina - tindamax is an antibiotic; it was prescribed to keep the fistula from draining so much, as I understand it. It has a side benefit of calming down the pouchitis. I've taken quite a few ABs through the years for pouchitis - but it's been relatively calm since the fistula/abscess appeared. Weird.

Jury's out on whether it's Crohn's or not. Shen is not convinced it is, my local surgeon believes it is, due to the fistula/abscess/inflammation/prometheus test, etc. As I understand it, it's not always a simple matter to dx Crohn's.

Hmmm...ok makes sense. Thanks so much for sharing! And hope you keep feeling better and better!

NancyAnn who is your surgeon? I was just diagnosed with a fistula, by Shen,at the anastomosis line which exits into my tailbone cavity somewhere? I need to go get MRI and on Tindamax as well. I see my surgeon in 4 weeks to discuss a plan. My surgeon is Dr.Kalady at the Cleveland Clinic.

Hi Poucho - Dr. Shen "assigned" me to Dr. Tracy Hull for a surgical consult re. the fistula. I think he chose her because of her "femaleness" and the nature of my fistula (pouch-vaginal). My local surgeon, who created the jpouch, does not have much experience with pouch problems and pouch-fistula issues: his first reaction was to take the pouch out. While I have accepted this may be the end result, there's no harm in discussing options with another surgeon. Pouch has been behaving beautifully since the fistula treatment, so I certainly would like to save it if possible.

Sorry to hear of your fistula dx. I'm very interested to hear how you progress with it, and with your surgeon at CC.

HI, there are several great surgeons there, so if Kalady does not want to try and fix it, then i can get a second or third opinion there i guess. Kalady did my original surgeries and trained under the great Dr.Fazio there. Dr.Shen also said he has a few tricks up his sleeve that he could try as well, like injecting steroids directly into the fistula, or cutting it somehow? not sure how he described it. I went through so much initial problems with this pouch and the surgeries that i am going to fight to keep this damn thing.

Dr. Shen tried injecting my fistula with doxycycline, 3 times. There's a detailed thread here: http://j-pouch.org/eve/forums/...427095116#5427095116.

Good luck, and keep us all posted, please!

When is your consult with Dr.Hull?When Shen mentioned the injection to the fistula, he mentioned a steroid, not and antibiotic? wonder if this is different or if this is what hes talking about? I have my MRI in 2 weeks and my scope with surgeon in 5 weeks. I hope something can be done, i dont want the darn bag again.

I see Dr. Hull May 16th - consult only, no scope at this time. Shen never mentioned steroid injections to me, so my guess is that he was talking antibiotic (doxy) injections, as this seems to be one of the first therapies he tries on some fistulas.

i see my surgeon 2 days before you. I will let you know what he says.

the only info that comes up on fistulas on the search here seems to be RVF type ? nobody really with what i have? hmmm?

Poucho - one other note (probably should have started a separate thread?) - I've talked to another person who had an RV fistula who recently had the LIFT procedure - you may want to look into it, and ask your surgeon about it. She said it was easier than her seton surgery, and that so far, it's been a success since her surgery in January.

I am male, so I dont have an RVF..lol. mine is at the anastamosis site where the cuff is and just goes to my tailbone cavity area. does not drain outside my body, and not really sure how bad it is draining until my MRI .

I'm having a MRI in a few weeks to determine if I have a RV fistula. I'm very concerned not so much for the diagnosis, but for the treatment. I do not want to have an ileostomy even if it's just temporary. Until I know for sure what is going on I'm keeping my fingers crossed.

Poucho Marx I have been following your threads a lot lately because it seems we've both been going through the same things at the same times. Your posts give me the answers I need!