need help asap

I am sorry to hear of your troubles.

Your doctor/surgeon should be able to tell you if you have cuff inflammation by a scope and biopsies and you would definitely feel it (burning, itching, bleeding, increased movements). Unfortunately, the small piece of cuff left can cause many of us a lot of pain and heartache after surgery.

If you have a fistula, I do agree that it is possible you could have crohn's. Maybe you have peri-anal crohn's as I have suspected I may have this due to a lot of the same issues you are describing minus the fistula. I akm often on antibiotics as well as various rectal meds to try and keep my pouch and cuff inflammation controlled as best as possible.

If you have crohn's and cannot control this via medications, you may want to discuss your surgical options. If only the cuff is inflamed you can try various rectal medications (this does take time to heal the area though). If this does not work and
the pouch is ok, you can remove the cuff and re-attach the pouch (it is hand-sewn at this time).

Good Luck, Talk to your surgeon about other possible options. before throwing in the towel. I am sure losing weight,not eating and not feeling well is draining on you also. Try to keep your strength up as best as possible.

Wow. I'm so sorry to hear of your ongoing problems.

You keep a rectal cuff, from my understanding, to help stay continent. Without it, it'd be much harder to do so, but possible. So to "leave" it is pretty routine and nearly necessary, though I had a mucosectomy with mine.

I think, though it's just my gut feeling to say this and not based on a personal story, that I'd go end ileostomy if I was suffering like you. So many seem to get their life back in instances like yours, when they go that route.

I have a perianal fistula, but no other signs of CD (they can be part of the surgery we have, or b/c of UC, too, though more common in perianal CD)... I have a seton, and it helps the fistula cycle. Do you have a seton, too?

More and more cases of chronic pouchitis are being diagnosed as Crohn's and you might talk to your GI about being treated for Crohn's along with pouchitis. The pouchitis thread has some great discussions for those with chronic disease.

Sue

quote:

even though doctors say the j pouch looks good, there is still so much active inflammation

This is what I do not understand. How can your pouch look good, yet have active inflammation? I am presuming it is from cuffitis. The retained rectal cuff can be a real problem for some, and pouch advancement surgery can solve that issue. A perianal fistula can point to a Crohn's diagnosis, but Crohn's fistulas tend to look different than others. If the fistula arises from the pouch-anal anastomosis, then you cannot really conclude Crohn's from that, since that is usually a purely surgical complication.

When I was on Humira for my arthritis I needed to be on weekly injections. My rheumatologist told me that those with IBD need higher dosing than those with only inflammatory arthritis. If you want to move on to a different one, Simponi has been approved for use in UC. It is a monthly injection and I found it better than Humira (plus the injections do not sting! Always a plus!) My GI tells me that my pouch never looked better since starting Simponi. My chronic cuffitis is in much better control too. You may also need topical treatment for cuffitis, like hydrocortisone or mesalamine suppositories.

But, if Crohn's is a strong possibility, then a k-pouch is not a good idea. If the j-pouch cannot be saved in that case, then end ileostomy is really the only other answer.

Jan

I tend to agree with Jan on this one. It sounds to me like you have inflammation in your cugff (which can make you VERY miserable) versus your pouch if they claim it looks good. I cannot speak for the crohn's and the fistula. Ask your doctor if you can try some rectal meds and even rectiv (ointment). When my cuffitis is UNBEARABLE, canasa suppositories, anucort and rectiv (causes migraine headaches though) help. I also tend to reach for the antibiotics at this time for extra help also.