I sit here unable to sleep because I am in pain and I need to use the washroom and I just know that will pop the pain up to a 7 or 8.
I've had crohn's and anal fissures since 2006. The only thing that's ever worked to fix the fissures is botox injections. Unfortunately I live in Alaska and the CRS here in town is the REASON I have crohn's (quick version: I had [wiki2="Clostridium-difficile"]c diff[/wiki2] and she refused to do a stool test and misdiagnosed it... ergo less than zero trust). I have to fly to my surgeon in Seattle.
I also have lupus and ankylosing spondolytis plus all those other bonus auto immune diseases. My condition is already complicated enough my insurance pays for my flights to Seattle for rheumatology tx but I jam in my GI & surgeon visits for the botox shots.
Now I have had new rectal pain for over a month. It is radiating to my butt cheek and examination shows a new dimple on my skin that hurts when palpated. The GI is pretty sure (via phone consult) I have a fistula forming. I fly down this next weekend and see my surgeon Monday, rheumy Tuesday, got told today I am booked at the hospital for botox injection and examination under sedation Wednesday am... I also happen to be booked with the GI Wednesday too, because it couldn't be easy, right? Oh well... I'll figure the GI part out.
I am desperate for any type of ostomy to re-route away from my bahookie. Currently it is bloody mucous and diarrhea and excruciating. My surgeon says if there's a fistula she'll fix it when she goes in to do the exam and botox. She thinks I just want an ostomy because I am in so much pain and I'll change my mind after she fixes it. I am not so sure I can recover with anything that's constantly exposed to feces. I am so ready for an ostomy. I go days on clear broth and jello to prevent BMs.
I am just so scared. I thought only UC got fistulas, guess not. If the fistula isn't popped through the skin what do they do? I only find info on if it goes through the skin. Should I push for an ostomy? Also, after each BM (and sometimes in between) I get stabbing pain on my right side too... how will the surgeon know if I have fistulas higher up too or not? How do they tell that? Is that via MRI?
I am currently taking azothiropine, enbrel, cipro alternating with flagyl, lots of pain meds... I can't take humira anymore. I've done all of the infusion meds and nothing's worked on putting my diseases in remission, pentasa and 6MP didn't work. On my bum I've tried all of the topical ointments, the dilatin, nitro, cortisone etc. I use Rx 5% lidocain but that stopped being very effective for the pain years ago. To completely deal with a BM I need to take a ketorolac + a valium + a muscle relaxer + a pain pill. I try to stay away from the ketorolac because my bleeding is so bad already. I just don't see how hoping for a drug to cure this is a reasonable thought?
Sorry this is so long, I just don't know what to expect. I am in desperate pain. I guess I am part of the club.
