Sorry, should of posted this a while ago..
Here's my story, as short as possible:
Dx Nov 05 after a fissure was found in Jun 05. Had an emergency colonoscopy after flagyl & cipro TORE me up. Go under control with Entocort & Rowasa. Got better and started to wean off meds (except Entocort). Crohn's was found in large intestines and primarily rectum & sigmoid. Had severe abscess that grew enormous before I knew what it was. Was in ER twice and 2nd time it got drained and I was admitted to hospital because of pain. Got pain under control, gave me 40mg of Pred, colon surgeon got me into a GI fast and the GI put me on Colozal, Rowasa, Steroid Enemas, and upped my Pred to 60mg, and gave me a few other things. 2 weeks into that treatment, I started to refract (got better, and then started going in reverse). GI immediately switched me to Remicade after they continued to find fistulas, fissures, and abscesses. I met the GI in January, and started Remicade mid-February 06. By May 06, I was in remission. Went through infertility treatments, go pregnant Feb 07. Delivered Aug 07, started to feel off, I was on Remicade every 8 weeks at 5mg/kg and doing fine (amidst a lot of stress with a premature baby and my other daughter's funeral). Called the GI in Jan, because just wasn't feeling any better once the pregnancy hormones wore off. I opted for a colonoscopy before making any change of protocol. Colonoscopy showed mild inflammation. He recommended Imuran, I disagreed. He referred me to a GI at a bigger hospital with more research. Met new GI in Jun 08. He was great, we changed the Remicade to 10mg/kg every 8 weeks...unfortunately, I was too far into this flare and had no idea. Rushed via ambulance in early Jul 08 because of pain. Spent 8 days in hospital with PICC line, cipro, flagyl, sigmoid colonoscopy, dilaudid for pain, and complete bowel rest (all liquid & clear liquid diet). They put me on 40mg of pred. Tried to wean me off, I flared.. they bumped my Remicade to every 6 weeks (10mg). Tried to wean off Pred again...flared bad. Bumped me back to 30mg and I held on that. I had to decide on clinical trial or Tsyabri. I chose trial. Started trial in Oct. It's Feb 09, trial NOT working. I'm on 6-9 pain pills a day along with xanax, phenergan, and levsin fairly regularly. I'm maintaining weight, but only because of all the meds. These are obviously short-term meds..
I'm still having regular pain and cramps. I see the GI tomorrow... He's recommending:
I'm against Tysabri for obvious reason. Again Methotrexate because I'm in my child bearing years. My surgeon has been examining my file and consulting with other docs for the last week or two and I see in March 3. We might consider a temp ostomy.
Can you all help with questions to ask the GI? I'm at a blank, though I know I'll have a huge list by tomorrow afternoon and once I get started with questions, they'll start coming to me faster.
Thank you guys! You've all been a tremendous amount of help/support the last several months...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08 - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old