Fistula 3 Months After Resection

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craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 2/22/2009 9:47 PM (GMT -7)   
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!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/23/2009 4:42 AM (GMT -7)   
Hi Welcome to Healing Well .I had surgery a few years ago for a large abscess and got a fistula from that. I went on Remicade and that helped it, I also took B-12 which made a big difference in my healing process. I know they are weird little things and was totally freaked about it but it did heal. My large one to small intestine to large didn't though that was taken care of when I had resection last January. Also alot on here don't have D and tend to be C. Hope you and your Dr. can come up with a good plan to help you. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/23/2009 6:09 AM (GMT -7)   
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!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 2/23/2009 8:24 AM (GMT -7)   
People are having great success in healing fistulas with the immuno-modulating drugs like humira and remicade. These drugs, when the patient responds, can heal crohn's lesions very quickly.
Belleenstein:

30+ years living with Crohn's.


craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 2/23/2009 12:54 PM (GMT -7)   
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.

craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 2/24/2009 1:25 AM (GMT -7)   
My doctor decided to wait until I go south for a consult with a gastroenterologist before giving me a prescription for the fistula, something about him never prescribing infliximab here before and wanting someone with more experience with it to give an opinion?....Hopefully that will be in a few days, but how long does it usually take for the medications to heal a fistula to the skin??

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/24/2009 4:33 AM (GMT -7)   
HiMine healed around the third infusion.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail

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