Crohn's / Fistula / Dare I Say "Hopeless"

Hello everyone on the boards!  I am writing because I just need to pour this disappointment out of me.  I have been enduring a fistula (recto - vaginal) since February.  It has gotten worse over the months.  I have tried Cipro / Flagyl  first (in addition to the usual prednisone). Then Humira, then Remicade.  Nothing helped.  Reacted to the remicade.  GI doctor put me on tacrolimus 5 weeks ago and suggested I see a surgeon.  So I went yesterday and the surgeon said that I am not even a candidate for surgery, the tissue is too damaged to repair!!!   I was so scared to go and hear about surgery. Like that made the whole thing more real.   It's sorta funny, even though I didn't WANT surgery, I am disappointed to find out I am not able to get a surgery.  I felt like it was my "get out of jail free card", if I can't heal at best or at worst, just cope with this yukky fistula anymore, there would be surgery to fix it, as difficult as it might be, it was at least an option.  Well NO!  There is no "plan B" of surgery, she said my tissue is too damaged to do it, and it would definitly fail.  Waah! The medicine for the past 9 months hasn't helped, surgery is out of the question until I get well, but I am not getting well with any medicine ... Vicious circle.  I know, I have to continue to see my GI, and take my medicine,  but honestly, I feel so hopeless I could cry.   This flare started on Christmas Eve last year, so the idea of being sick thru my 2nd year of holidays is really making me feel very very blue!!!  I just had to post this, altho family & friends are great and do try, I don't think they can understand.  They all say "did you ask the doctor about this" and "how long will it be until the medicine helps" and all these things that either I didn't ask the Doctor about or the Doctor just can't answer...  So, talking to them makes me feel so inadequate, like if I just asked the right questions, I'd get the answer to heal.  I think posting this is a good idea for me to get it off my chest.  It's just wehre I'm at.  I am grateful I can work.. and waiting for better days.  Although it seems there is no answer... not even the doctors can help right now.  Just time, maybe, and endurance.  Sigh... will sign off now, what a "bummer" but I'm feeling like a real whiner today... I'm glad I have this board and wish for good days for all of you on it and me too!

  

NDBC (ha, those initials are short for "not defined by crohns"  - that's kinda funny right now, cause right ow I am so restricted by crohns!)

Currently on:  Lialda, tacrolimus, celebrex, lyrica, hydrocodone as needed

 

I would get a second opinion on the surgery and on what meds you could take. Remicade did not work for me, but 6MP did and it closed my fistula - it took time though. I had an abdominal fistula for at least 2 years and it took several months for it to close.

I too emphasize the sentiments of the other replies you've had here. If you're not being helped by who you're seeing now, definitely seeka second, (third, fourth), opinion. 

I'm sure there is someone out there that can offer you some kind of treatment option. Good luck.

Hello, thank you for helping me think this through. I appreciate all of the folks on this site who help. I am still so befuddled with the whole thing (hole thing, unintentional fistula pun - ha!) Anyway, even though I am befuddled, I feel less alone with this. Thanks again.
NDBC

In answer to your reply I've been dealing with Crohns for 10years now and haven't been on any medications. The first Gastro Dock I saw (for 8years, tried putting me on Methotraxate and then steriods, one of which is tried, although I did try the methotraxate for 1 week as it made me sick. I decided last summer in August to go get a second opionion, so I went to a specialist for Crohns in which he did a MRI and did find that the reason the alkaline-phosphatase was elevated was coming from the liver not the bone. So that in itself was scary for me. The last liver ensymes I had done when I had my physical in Oct of this year showed the bilirubin normal and thew alkaline-phos was 117, which my Doc said was within the normal limits. In August my Gastro-Doc did the liver ensymes and showed the alka-phos was 131 and he too said that it was within normal limits. He now wants to put me on the Drug Humiria which he said there is a 50-65% chance of possibly healing the Fistulas. But there is alot of serious side effects that go along with it and along with now having pre-existing liver conditions, I just don't think that would be a good choice for me. What do you think? I'm pretty scared right now!!--SandyJ