Semi Colon blog began the week before my first surgery for Ulcerative Colitis. It‘s sort of my journal about my fun health adventures with autoimmune disease.
I began experiencing rectal bleeding in summer 2006, after my freshman year of college. I was told the bleeding was due to stress and a lack of fiber in my diet. In October 2007, after weeks of bloody diarrhea 12 times a day, I was diagnosed with Ulcerative Colitis. My first GI doctor told me he thought I’d have a mild case of UC. I was an NCAA Division I Diver, and I was relieved to hear that this would be manageable.
I quickly went through all the medications available for UC. I experienced 2 brief periods of remission, but mostly, I continued to struggle with UC. I also had joint pain, swelling, stiffness, and weakness, and was diagnosed with Autoimmune Inflammatory Arthritis. I was benched from the Diving team after a 3-week hospitalization for pancreatitis and a bad flare up. After exhausting medical, dietary, and alternative treatments, I had steps 1 and 2 of the J pouch procedure in October 2009 (laparoscopic total proctocolectomy with ileoanal anastamosis with loop ileostomy).
I developed pouchitis almost immediately after this surgery. Despite having an ileostomy, I would pass blood from my J pouch many times a day and up to 7 times per night. My arthritis also worsened during this time, I became adrenally insufficient because I had been on steroids for so long, and I developed widespread chronic pain. But I still liked to think that I was SUPER! ;)
I was treated with antibiotics, steroids, and Humira, but the pouchitis was so bad that I had my J pouch removed and I was given a permanent ileostomy in August 2010. I developed a large abscess in my pelvis after surgery, and had to have it drained in September 2010. I was unable to take any food or drink by mouth for 3 weeks and had to relearn how to eat! The drain (named Mr. Clean) was removed 6 weeks later, and (of course…) the abscesses returned a few days later. I had 5 days of IV antibiotics, followed by 7 months on and off oral antibiotics. I continued to feel very nauseated and tired, and I lost over 15 pounds.
In April 2011, I went on TPN (IV nutrition) to help me gain strength for my third surgery to drain the abscesses. This surgery was only temporarily successful. The abscesses returned yet again! They were very persistent! In June 2011, my remaining J pouch stump, rectum, and anus were removed. The surgical site (that’s a polite way of saying the area where my anus used to be) was left open to heal from the inside out. I had a Wound VAC for 80 days and continue to undergo wound care (as of November 2011).
I also continue to deal with the other autoimmune issues that UC set off: arthritis, adrenal insufficiency, chronic pain, dumping syndrome, and probably something else I forgot to mention (oh yeah! Chronic forgetfulness!), but I’m not as scary as I sound on paper (at least, I hope not!).
This story sounds sort of horrible… and I’ll admit, it’s been quite a journey, but God has been good every step of the way. With my eyes on Him and stubbornly refusing to let go of my sense of humor, my sidekick Squirt (my ileostomy) and I have led many exciting adventures! When I'm not doing doctor stuff, I enjoy reading, cooking, chocolate, volunteering, church, being with friends, making thank-you notes, and being awesome!
Thanks for coming by!
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