2nd Opinion Says... Surgery to remove fistula!! (update)

I came on board a few months ago asking about getting a second opinion, and with everyone's help, selected Johns Hopkins as the place to go! I have now been there and seen a GI and a surgeon.

No surprise, the GI says we have already tried everything medically to get rid of the fistula. The surgeon seems very comfortable with the idea of closing the fistula, possibly breaking up adhesions (I have already had surgery to break up painful adhesions, so it's a given that I will have lots of them!), and maybe even taking care of a stray stricture or so.

My CT from Jan. of last year shows narrowing in the area of the fistula, so I may hit the trifecta and take care of everything at once!

First, however, I go for the Colonoscopy and MRI with enterography (dye) to get the best possible picture of what it looks like now. In preparation for surgery, they also are requiring me to stop Humira for 1 month prior to surgery, and to taper off prednisone, both of which could impede healing. So I am already doing that.... Interestingly, since I have started tapering the dreaded pred and stopped the Humira, my fistula drainage has increased and the pain has definitely gotten worse. So it appears that one or both were helping to hold this dratted thing in limbo. My problem -- I just don't want to live the rest of my life in fistula limbo land!

So -- on we go -- surgery is scheduled for April 12th. I am anxious, hopeful, fearful, all at the same time. I am confident that I am making the right choice, but change is always scary, you know -- the known versus the unknown...

Sudsmom

Good for you! I hope everything goes well! In my case, surgery on my fistulas was the best thing I ever did. The recovery was tough the first few weeks but once you get through it you'll be glad you did it! I had the fistulotomy what type of surgery are you going to have is it that one? That's when they remove the fistula completely.  In my case I had the surgery and had to do wet to dry dressings on the wounds for about a week. After that I just had to put gauze on the outside of the wounds. After I started taking Humira it completely healed and hasn't come back. So hopefully your fistula won't come back also! Good Luck!

Hi Sudsmom,

Just wanted to send good wishes your way that your surgery gets you feeling better soon, and you enjoy a long long remission. Keep us posted on how everything goes.

Hugs
Gail*Nanners*

I was on Humira for 18 mos. which really did nothing for me. I guess we could have tried Remicade, but having to deal with the fistula for 2 years, I was ready to get rid of it. I also had a fair amount of abdominal pain (which never goes away for me, I grow adhesions like crazy), and a narrowing which I knew about from my temporary obstructions over the last 5 years.

As much as I hate surgery, it was time. And with all she found and fixed, I'm glad I did it!

See my signature for some of my history...

Sudsmom