Mucosectomy/Pouch advancement

PM jeane. She has done massive research on this and just returned from seeing the experts at Cleveland clinic.

Hi Jeane,

I'm sorry to hear that you are going through this as well! I have read some of your posts - what a nightmare. Yes, it seems that the cuffitis caused the fistula. I have been in so much pain for a while now but I think a big mistake here is that I should have been following up with my GI alongside my surgeon before things got so out of control. I just kind of thought I was having a much harder recovery time than normal and just was feeling pretty hopeless about it in general. I actually believe that I have had the cuffitis throughout all of my surgeries and it was never really addressed but I was only officially diagnosed with it at the EUA I had last week. Supposedly my pouch looks good though. However, it is severe cuffitis and I have been very symptomatic for months now. However, I don't have the classic symptom of bleeding.

I'm on Canasa now which almost seems to irritate things further. I never really responded to it with a colon so I'm not that hopeful. I didn't realize Cipro was a treatment as well. I can't do any kind of Cortifoam/steroids because of the fistula.

I think the combination of the severe cuffitis and the fistula is unfortunately not giving me that many options. I think if it were one issue by itself, then it would probably be easier to treat. I have been pretty miserable for a while now...

That's great that you were able to get to CC. Have you made a decision with whether you are going to go with pouch advancement?

I just sent you a PM.

If you're considering a mucosasectomy, I highly recommend Dr. Becker here in Boston. He is very well regarded and did my surgery. Happy to discuss.

Can you try Anucort (hydrocortisone acetate 25 mg) suppositories for your cuffitis? I've used them as well but the canasa works best for my cuffitis.

what is an sso?

jeanne,
I don't know what a sso is either but understand how you feel about your life escaping you. Please hold on for a while longer and give this non surgical approach to work. It could be the antibiotics causing problems, I've heard of stranger things.

I've had too many antibiotics during the years and get C-diff infections. I hope you never have to deal with that. I had to go in for stitches Monday and along with a tetanus shot the urgent care doctor put me on antibiotics. I emailed my Internist and she pulled me off of them, after 2 doses, due to C-diff potential. She also said to increase my VSL#3 for a while and add in more yogurt. Had the stitches removed yesterday and no sign of infection.

It sucks to have our GI problems rollover to everything else, but what are we to do?

Thank you. Sso is second surgical opinion