I met with my GI today. He's really pleased with how I'm doing. I've gained 17 lbs since my surgery 5 weeks ago, and my CDAI score went from like 150-200 to 26!!!! INSANE. I'm almost off my pred and he thinks I will be ok without a maintenance drug (good since I don't think there's one out there that I haven't tried) and I'm coming back in 3 months.
The bad thing: I had outpatient surgery 2 months ago for chronic urinary retention and was recovering well until my proctocolectomy. They removed my catheter after having my colon removed and peeing has been a nightmare ever since. It's as if I never had the bladder surgery. I have to pee CONSTANTLY. I'm so uncomfortable. And it's so frustrating becuase I'm doing SO WELL with my ileostomy--it's like super irony and I just want to feel well. My GI said I probably have a stricture in my urethra from having the catheter in during the surgery. I am SO MAD and I am going to call my urologist tomorrow. The treatment options for a urethral stricture are dilation or surgery. I'd rather have surgery and just get it over with and be better but I have missed SO MUCH WORK in the past 3 months with these two surgeries. Plus I live alone and my family lives 1,000 miles away and I have already had them come stay with me TWICE for my other surgeries in the past 3 months to take care of me. UGH I hate this.
I don't know what I want--advice, words of wisdom, I don't know...I'm just so frustrated and angry and I just want to feel better and live my life. :(
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
Currently on:7.5 mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Flomax (for urinary retention).