- Joined
- Jul 19, 2011
- Messages
- 3
I was diagnosed with Crohn's with 13. At that time I had an abcess drained due to a perianal fistula. I took several medications including Prednisone, Flagyl, Asacol, 6mp, and Prevacid. I'm not sure which combination did the trick at the time, as it was 12 years ago, but after a couple years I eventually went into 'supposed' remission when I was 16 or so and stopped taking meds altogether although i was left with a nasty scar from abcess/fistula.
Cut forward to January 2011, I'm now 25. I started peeing blood and went to the ER with a bladder infection. They put me on Cipro for 10 days. I felt a little better, but after a couple of days my symptoms were back with a vengeance. I started peeing air in addition to the blood. I ended up getting a fever of 104 F and was hospitalized with a severe kidney infection. During my stay I met with a GI and told him all my symptoms. He determined that I have a fistula into my bladder from somewhere in my intestines. He did a colonoscopy and found a bit of bleeding but no fistula and concluded that it must be in my small intestine somewhere. I had TONS of bloodwork, a few X-Rays, and a Cat Scan? CT Scan? not sure, haha, but that was all. No barium, no ultrasound, none of the other tests that were done on me when I was 13. For the tests that were run, however, everything was inconclusive. It was fairly obvious, however, that all my symptoms led to an enterovesicular fistula. I was on a potassium and Flagyl drips, prescribed Pentasa, Prednisone, Levaquin, Prilosec, and iron. After about a week I got a bit better, was released and then started Remicade treatments.
I received my 3 loading doses of Remicade and continued on Pentasa and by April I felt awesome. It was as if I never were sick at all. No symptoms whatsoever. I continnued to take Pentasa and was scheduled for Remicade every 8 weeks. Then, the Friday before Easter I ate a meal that contained carrots. Next day, they came out in my urine.
And thats basically where I'm at today.. peeing carrots still. Oh, along with that scar on my bum leaking. My GI doc really wants me to continue with Remicade once a month but says I may be at the point of surgery. I'd prefer not to get surgery if I can help it, but I don't seem to be reading too many success stories concerning Remicade and bladder fistuals from the small intestine. I'm really at a loss as to what i should do. I'm fed up with Crohn's dictating my life, though I am aware that it will always play a role. I've searched the forums quite a bit, as well as some extensive Googling, but there seems to be little in the way of information about these types of fistulas. From what I understand, everyone is different with Crohn's and not all treatments work the same for everyone. Remicade really seems to be hit or miss and in treating this specific condition it seems to miss a lot more. But I'm quite terrified of surgery..
So I guess I'm here to try and find out something, anything, about possibly treating this fistula without surgery. Are there viable treatments? Are they worth it if the fistula just reoccurs? I appreciate any feedback anyone might have. Thanks.
Cut forward to January 2011, I'm now 25. I started peeing blood and went to the ER with a bladder infection. They put me on Cipro for 10 days. I felt a little better, but after a couple of days my symptoms were back with a vengeance. I started peeing air in addition to the blood. I ended up getting a fever of 104 F and was hospitalized with a severe kidney infection. During my stay I met with a GI and told him all my symptoms. He determined that I have a fistula into my bladder from somewhere in my intestines. He did a colonoscopy and found a bit of bleeding but no fistula and concluded that it must be in my small intestine somewhere. I had TONS of bloodwork, a few X-Rays, and a Cat Scan? CT Scan? not sure, haha, but that was all. No barium, no ultrasound, none of the other tests that were done on me when I was 13. For the tests that were run, however, everything was inconclusive. It was fairly obvious, however, that all my symptoms led to an enterovesicular fistula. I was on a potassium and Flagyl drips, prescribed Pentasa, Prednisone, Levaquin, Prilosec, and iron. After about a week I got a bit better, was released and then started Remicade treatments.
I received my 3 loading doses of Remicade and continued on Pentasa and by April I felt awesome. It was as if I never were sick at all. No symptoms whatsoever. I continnued to take Pentasa and was scheduled for Remicade every 8 weeks. Then, the Friday before Easter I ate a meal that contained carrots. Next day, they came out in my urine.
And thats basically where I'm at today.. peeing carrots still. Oh, along with that scar on my bum leaking. My GI doc really wants me to continue with Remicade once a month but says I may be at the point of surgery. I'd prefer not to get surgery if I can help it, but I don't seem to be reading too many success stories concerning Remicade and bladder fistuals from the small intestine. I'm really at a loss as to what i should do. I'm fed up with Crohn's dictating my life, though I am aware that it will always play a role. I've searched the forums quite a bit, as well as some extensive Googling, but there seems to be little in the way of information about these types of fistulas. From what I understand, everyone is different with Crohn's and not all treatments work the same for everyone. Remicade really seems to be hit or miss and in treating this specific condition it seems to miss a lot more. But I'm quite terrified of surgery..
So I guess I'm here to try and find out something, anything, about possibly treating this fistula without surgery. Are there viable treatments? Are they worth it if the fistula just reoccurs? I appreciate any feedback anyone might have. Thanks.
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