Hello,
Last August, I was diagnosed with 2 complex anal fistula. One is more superficial and the other is an intersphincteric tract. I have had setons for 8 months and started Humira in September. I had a pouchoscopy and MRI here at the Cleveland Clinic in Weston, FL under the care of Dr. Wexner.
I saw him this morning for a follow-up visit to discuss the findings of both tests. He provided 2 possible pathways for the near future.
1. Leave the setons in place and wait for further FDA approval of other possible treatments like stem cell therapy.
2. Try the mesenchymal stem cell treatment at Cleveland Clinic, remove the setons and see if it is successful.
Here's where I hope to glean information from you:
The stem cell therapy that he suggested has not been FDA approved and would therefore cost $3500 per treatment. Luckily for me, that is not a huge issue. I spoke with the doctor who actually does the SC treatment and she said that it is about a 50/50 outcome at best. Not great odds. She also said that the J-pouch is a complicating factor in treating fistulas. If this does not work, an abscess would reoccur and would necessitate the replacement of the setons. A waste of time, money, and possible side-effects.
For some reason the setons that I have now cause constant pain and discomfort after using the bathroom, getting increasingly worse as the day progresses. Also, I seem to feel MUCH better when on a course of antibiotics. Any thoughts would be great.
Dr. Wexner cautioned that ANY surgical treatment for the complex fistula come with potential serious outcomes, again because of the J-pouch and a lack of a rectum. The LIFT or Flap procedures could possibly ruin the pouch.
I have a telemedicine visit with Dr. Remzi in April. I wasn't going to do it, but now I think it would be a good idea.
If anyone out there has had experience with the stem cell treatment or the treatment of fistula with a J-pouch in general, I would appreciate any information that you could provide.
Thank you,
Lisa