Fistula 3 Months After Resection

I will try to explain my Crohn's History:

In November 2007, I had my appendix removed. At the time, I had been sick for two months and the doctor I was seeing didn't know why, and after a CT scan, they thought maybe I had Crohn's, as they saw inflammation and an abscess. So they went in and saw that my appendix had actually ruptured (yet I never felt a constant pain that you are supposed to, or had any digestive problems) so they removed it and that was that. Until two weeks later, when the abscess was back, so I saw a different surgeon (who is now the only surgeon in my town) and he drained the abscess and I had a tube in for about three weeks.

After those two surgeries, I felt perfectly fine for about a year. This brings me to October 2008. For a few days, I noticed I was feeling a bit weak, and was very uncomfortable when laying on my sides and sitting in certain positions. Turns out, I had ulcers and fissures and another abscess at the ileocecum. Again, this all happened without me knowing (no digestive problems, only mild aches in my lower right abdomen). So I had that removed with a resection. The specimen was sent to a lab and results came back diagnosing me with Crohn's in November 2008, a nice birthday present.

After about a month, I had a wound infection (just as the last bit of the incision was healing). They cut it open a bit to drain, and it healed.

Then, at the beginning of January 2009, I had another "wound infection" just below the first on the incision. I had a colonoscopy and a small bowel follow through, which both came out to be relatively normal (aside from the signs of inflammation, which was I guess to be expected given the new diagnosis). It wouldn't heal and after about a month, a 1/2 inch of stitch came out (that didn't dissolve) and again waited for it then to heal. February 2009, just a couple days ago, I had a fistulogram which made it quite obvious it was a fistula coming from the bowel. Yay. And it seems to be getting worse, as it is draining more and yuckier stuff.

Now my doctor/surgeon is trying to figure out what medication to try first, before resorting to another surgery. I meet with him tomorrow to discuss his recommendation. I find it hard to believe that taking medicine will be able to heal a hole in the intestine, but I guess we'll see. I haven't read any encouraging information on this. I also thought that after a resection, things were supposed to be "good" for a while.

All this Crohn's stuff is new to me obviously, and I still have a little doubt in the back of my mind since I've been reading these posts for a while and I just don't seem to fit the symptoms...mainly the diarhea, which from what I understand is a big one, and I just haven't had it at all...or constant stomach pains...it seems that I don't notice anything until I have an abscess pressing on my muscles (which is scary, because then how am I supposed to know when I'm having a "flare-up" or what foods may not be good for me?)

I guess the point of this (long) post is to get some input on treating fistulas, or if anybody else has had similar experiences...because honestly, if somebody were to tell me that they had a tunnel from their intestine to the outside of their belly, I would think it was totally weird. And that's what I have right now.

Thanks for any input or responses!

Hello Craizy_daizy,

Welcome to the Forum! I have had abscesses and fistulae in the rectum/perineum area. The only other Crohn's symptoms I have are that I am low on energy and blood tests show I am a little low on vitamins D and B-12. Colonoscopy only showed inflammation in the rectum but only at the fistula opening. A biospy of tissue around the fistula showed Crohn's, so that is what they say I have. I take 6MP and vitamins D and B-12 (pills). I can eat what I want and have normal bowel movements. And I feel blessed to otherwise be normal! I just had a check-up with my GI doc and talked once again about how the only way to tell if the medication is working is whether I get another abscess. So I work on getting on with life rather than waiting to abscess! I'm going to take the drug and keep praying that it keeps me from abscessing.

I hope your new doc has expereince in Crohn's. If not, it is worth traveling to one that does! This is a specialty. I hope you find a great therapy that quickly heals that pesky fistula!

Thanks, everybody. I'm already feeling a little more hopeful. I guess I should just be happy I don't have outward symptoms! I just thought it was odd, and maybe secretly hoping it was a misdiagnosed. Although, my boyfriend has repeatedly been talking about flying south (I'm in Alaska) to see someone for a second opinion. I am sort of a passive type person though and would really like to stick with the doctor I'm familiar with. But, we are starting to think that after all that's happened, there's only so much he can do, as he's just a general surgeon, there are no specialists here. I just don't know what exactly the purpose of a "second opinion" is, if I'm already convinced it's Crohn's, or how to go about it...I guess I'll talk to my doctor about that today.

Another thing that I've been wondering about...Insurance. With a diagnosis if Crohn's, I'm told I won't be able to try for private health insurance, I don't have any through a job, and I already tried for Medicaid a couple different points in my Crohn's Adventures and have been denied....Does anybody know of a reliable company that would cover this pre-existing condition?? I am pretty lucky to have a great payment plan for the bills I racked up this winter (since it's a small town hospital), but it would be comforting to have insurance...other than the "high risk" options through the state.

Thanks.

HiMine healed around the third infusion.lol gail