Hi Jane - I had a similar problem.  I had a three step JPouch process and got very sick between surgery 2 and 3.  My unhooked JPouch got Pouchitis - or in my case it could have been diversionary Pouchitis.  Your inflammation seems to be upstream from your JPouch, which potentially could rule out “diversionary” Pouchitis.  Nonetheless, I was treated, had my final closure surgery a year ago and unfortunately had Pouchitis back twice, somewhat controlled.  I am 51 and have been dealing with this terrible disease for 25 years.  I have learned a lot about treatments and would be happy to talk.  I live in NYC and my phone number is (917) 519-7292.  I am currently on Stelara, Metronidazole and Melsalimine.  I am cared for at Mt. Sinai and did my three surgeries at NYU Hospital.  I was in and out of the hospital a bit as well with some complications.  Give me a call anytime.  Best Doug

Thank you so much for your reply Doug. I am based in London.

I'm sorry to hear that you are still dealing with pouchitis. How debilitating are your symptoms?

My inflammation is in the pouch and in the ileum just upstream from it. I have been on cipro and metronidazole for months now, which I partially respond to but I am still symptomatic. Were you actively inflammed when you had the take down surgery? My worry is that it seems the likelihood of pouch failure is really high if there is active inflammation at the time of reconnection and, if I am symptomatic now, I am not looking forward to when food going through is added to the mix :/ Looking for any positive outcomes/stories!

When did you start the biologic and has it helped?

Thanks again,

Jane

The most effective treatment for diversion pouchitis tends to be placing the pouch into service. Trying to clear up the pouchitis prior to takedown is likely to lead to frustration.

Hi Jane,

I understand better now.  You have inflammation in the diverted pouch, as well as a bit upstream from the pouch.  That changes things in my mind (favorably).  Diversion Pouchitis and Diversion Colitis is a fairly common phenomenon, you may be suffering from that.  Doctors believe it happens because fatty acids found in our stool are nourishment for the lining of our bowel, and without the stool passing through the tissue, it’s gets inflammation.  I have read a lot about diversion Pouchitis because I had it for two months before my takedown.  The good news, within 3 weeks my takedown surgery, my diversion Pouchitis was completely gone!  The best remedy for diversion Pouchitis is to connect the JPouch from the literature I had read.  When I had diversion illness, my doctor would not even put me on Metronidazole or Cipro because he did not think it was a bacterial imbalance, but rather inflammation from the tissue under distress because of the lack of fecal throughput.  I did go on Fatty Acid Enemas nightly, which helped.  Is your inflammation so bad that the surgeon can’t close the ostomy?  Maybe you need a broad spectrum anti inflammatory like prednisone to calm things down?  (surgeons avoid this due to weaker post op healing).  I would try to go for a reconnection surgery, and don’t worry about pouch failure.  I don’t think it makes sense to highly correlate diversion Pouchitis with post closure classic Pouchitis- they are likely to have different mechanisms at play.  Many many patients with diversion disease get reconnected and do fine for years.  You have three options, 1) Stay diverted for a long time and suffer the challenge of remission, 2) Radically excise the JPouch and go with an End Ileostomy (you can always do that down the road - no need to consider that now), and 3) finally go for a connection.  I chose connection.  I did indeed get Pouchitis, six months after closure and I am treating it.  There are tons of drugs that work for classic Pouchitis, and less so for diversion Pouchitis.  You are in a tough spot, but this could all resolve after getting hooked up.

For me, my symptoms are like a 5 out of 10, I can live with them.  But is kinda sucks.  I am on Stelara for a while and I am unsure if it is helping.  I use Rowasa enemas also.  They are non steroidal.

Thank you both for your replies.

Forgive my ignorance... What are the features that suggest diversion pouchitis as opposed to other aetiologies?

@Scott F posted:

The most effective treatment for diversion pouchitis tends to be placing the pouch into service. Trying to clear up the pouchitis prior to takedown is likely to lead to frustration.

Takedown is the cure for many things, not just diversion pouchitis, but in my case yeast infection of the skin around the stoma due to constant leakage.

Sure (I am not a doctor), so please consult your GI.  My understanding is that Classic Pouchitis (of a hooked up pouch) has something to do with the change in flora (microbes) that form an unhealthy colonization in the pouch.  That is more typical when the pouch is hooked up, rather then when the pouch is diverted (like yours).  Cipro/Metronidazole are given to destroy the microbes and hopefully reduce the immune reaction that causes the Pouchitis.  However, it does not work for everyone (but most).  Some people’s immune system is very sensitive to minor changes in the pouch flora, and consequently they are put on immunosuppressive drugs like Remicade, Humira, Stelara- with a hope of controlling the immune response.  Now diversion Pouchitis shows up in some people’s diverted organ (pouch).  In some people, the tissue gets inflamed without the saturation of nutrients because the organ is diverted.  It happens in the colon as well sometimes when the colon is diverted in cancer surgery for example.  Diversion Pouchitis may be treated with different things, but sometimes GI’s just give antibiotics because they also have anti inflammatory properties.  If you scope a diverted pouch with diversion Pouchitis it could look the same as a Classic Pouchitis. Has the doctor ever brought up the concept of Diversion Pouchitis?  The good news - hooking you up could actually be the best form of treatment.  Would your surgeon attempt to reconnect?  Mine did.  

I am sorry you are suffering.  But there are a lot of options still.

Thank you again!

At the first pouchoscopy, my gi doubted diversion pouchitis because the inflammation was severe and he seemed to think it was usually milder in the above, especially as it was just a month after my pouch construction. I am booked for surgery next Monday. I have my fingers crossed that he is incorrect and I'm hopeful things will get better post surgery

Best of luck, Jane!

Thank you!

Best of luck with the surgery - you are in a tough spot, but you have come this far, and closing the stoma in some crazy way is the best way to tell.  If you have regular Pouchitis - they may put you on a biological medicine.  I hope the Pouchitis goes away for you.  It does indeed for most people.  Hang in there.  The final surgery is the least difficult for most people.  Please let us know how you did.

Best Doug

Thank you again Doug