Fistula Stories

I was diagnosed with Crohns about 6 years ago. Ive had an rectal-labial fistula for about 5 years. There was no abnormal opening at the end of the fistula so they made an incision in my labia where i noticed an abscess. Not to scare anyone about remicade but the only reason my fistula was created was because i stopped responding to remicade after a year of taking it. In my case it wasnt enough to treat and reach the end of my rectum so it started to inflame and dig in. I finally gave up and decided to have an ileostomy since i was having alot of discomfort and leaking. So in the mean time my rectum can be free from the multiple infections and be able to treat it. Im currently on humira and been taking it for about 4 years. Its definitley helped with my crohns but hasnt closed my fistula. Although it did help with the remaining inflammation at the end. Now I have alot of scarred tissue since they left me hanging for about 6-8 months because they couldnt figure out what was wrong with my rectum. They kept infusing me with remicade and it wasnt doing anything. So everything worsened. The surgeon who did my bag started to give up on me without trying any procedures to try and close up the fistula. She suggested I have a permanent colonostomy because "This is what God gave me and i should accept it" I am a very religous person but my parents and I could not tolerate such thing and complained about her. My GI referred me to another surgeon and performed many different procedures using plugs, glues, setons, and animal skin. Tried each one multiple times...non worked. Then my doctor referred me to another surgeon who was the top surgeon at the hospital and did the flap surgery...didnt work either. Still have the bag. Still have the fistula. The problem with my bag its a loop ileotomy meaning its temporary. Its been too long to have this temporary bag because my tummy created big stretch marks and been developing alot of cramps around it. So Im finally meeting a doctor who is one of the 3 top people who are the head of the IBD Clinical Research Unit. I have an appointment with him in two weeks. Im REALLY anxious to meet him and see if he can help me since hes dealt with many complicated cases similar to mine. Wish me luck everyone and pray for me    

god bless krispy, I'm the same as salad, hearing young people with this is very sad. i got this when I was 20 now 60. I was stricken down with this, really, I was a horse jockey and just started my racing career, and within 2 months I went from racing to hosp. with obstruction. and for a year I battled, but what was weird, I always new that I would get better and start riding again, and I did, after they removed 8ft of sm. bow. I was back at the track in 8 weeks, rode 18 years, winning 1012 races, rode app. 17,000 races, one relaspe for resection, and still went on with it for another couple of years, but after that resection, I did feel weaker and it was hard to ride as a pro for longer than a few years, i broke my neck and that kind of sealed it.

Wow you certainly have been through alot but it seems you have an awesome attitude even though I'm sure it's extremely frusterated and I wish you best of luck!

I'm suppose to be a Junior in college but I've only completed one semester because of my Crohn's and I'm going back to school in the fall for Nutritional Sciences! My ultimate goal is be a GI doctor because I want to help others too.

It must be fun doing makeup, I think you would be able to be so creative!

What kind of things do you stud in Naturopathy?
Sounds interesting.

All the best!

we took our daughter to naturepath in canada when we were living in calgary, she stuttered terrible when she was 2-3, we had to change our life style(slow it down), this nat. healed her stammer, by this magnet thingy, it took about 4 visits, it was miraculous, now she is wonderful speaker, very strong voice and confident speaker, and she is 5' 3". we loved the movie The kings speech.

Thanks jhess! I agree!

Krispy88: I agree with you on your philosophy, I'm definitely stronger because of everything I've been through and everything definitely happens for a reason!

And best of luck with the naturopathy thing, sounds like you have the drive to make it happen!