I am a 43-year-old mother of two awesome school-aged kids living in Cleveland, OH. Although I’m not currently employed d/t UC, I’m a clinical counselor specializing in emotionally and behaviorally challenged kids. I was diagnosed with UC December 2011 that became toxic very quickly, so had a temporary colectomy in Feb, 2012. I enjoy long-distance running, downhill skiing, working out watching my kids play sports and perform onstage, and reading.
None!! I guess technically, I don’t actually have UC because my colon and rectum have been removed. Let me tell you, I do NOT miss either!!
Following a Thanksgiving trip in Denver, I started experiencing frequent bloody diarrhea, overwhelming fatigue, abdominal cramping & nausea the beginning of December 2011. Had a colonoscopy Dec 30 at which time I was diagnosed with UC – pan colitis. Lucky Me. The doc put me on Asacol, which did not work.
Jan 9 2012, I was admitted to a suburban Cleveland Clinic hospital d/t dizziness, fatigue, 25-30 bloody diarrhea episodes per day. They put me on IV steroids which made the symptoms slow down, but not enough to be released and no where near remission. The GI unenthusiastically recommended Remicaid infusions because only about 30% of his patients experienced success with it. I was NOT in that 30%, so GI recommended surgery. Not ready to give up my colon yet, I asked for a second opinion and was shipped to the main campus of Cleveland Clinic. There, they basically monitored my fluids and observed me. The Remicaid by that time actually started to improve my symptoms, was only having 5 non-bloody diarrhea episodes/day, so they released me after spending about 2wks in the hospital. My new GI started me on a drug cocktail that included asacol, prednisone, mesalomine suppositories, and remicaid infusions.
Early Feb, I started again with multiple bloody stools/day. Doc tested me for C-Diff, which was positive, and put me on vacomycin. The new antibiotic did not work and within the week I was up to 20+ bloody stools/day, so was readmitted to Cleveland Clinic main campus, put on IV Flagyl and oral vacomyacin (or was it the other way around? I was so sick I can’t remember), IV steroids and God knows what else. This time, I was ready to part with my colon. Nothing was working. My colon was so sick, it became toxic and had to come out. I had no choice.
Surgery was Feb 15, and not so fun, but it was amazing not to feel so sick anymore!! I would be having j-pouch surgery in a total of 3 surgeries: In the first one I just had, the surgeon removed my colon, left the rectum in as a placeholder and created an ileostomy. In the second surgery, the surgeon would remove most of the rectum and create the j-pouch. In the third surgery, the surgeon would close up the stoma and I would start pooping out of my butt again (yay!) I adjusted pretty well to the stoma, so was released by Feb 22. However, I still felt overwhelming fatigue, and my rectal stump started to release bloody mucus that did not relent with the drugs the surgeon’s office prescribed, so they referred me to another GI. He prescribed a steroid foam, which made it a little better, but didn’t get rid of it completely.
One afternoon in Mid-May, I started experiencing excruciating abdominal pains, so went back into the hospital. The C-Diff had come back which was causing a partial small bowel obstruction. They stuck a tube up my nose & down my throat to suck out the contents of my stomach & small intestines, put me on bowel rest (nothing to eat or drink for several days), and pumped me full of flagyl and vacomyacin again. Ugh. I was released in 5 days feeling MUCH better. Almost normal, in fact.
After a very fun summer with most of my energy regained, I had the second surgery on August 16th which was more painful than the first, but you get some AWESOME pain meds, so it was pretty manageable. I actually healed alot faster after this surgery than the first. By 2-3 weeks I had most of my energy back and was able to do more than lay in my bed & watch HGTV :)!!
It’s been about 6 weeks and I feel just great!! I have a follow-up appt with the surgeon on Oct 3rd to make sure the Jpouch is working, then hopefully schedule the 3rd surgery before the end of the year. It certainly has been a rough 2012, but I am really glad that I was able to have my health restored w/surgery.
This has been the short version of my experiences. If you are interested in more details, I wrote a blog about it: http://lisakapp.blogspot.com/
Where I’d like to be in 1 year:
Working, training for a race, skiing and pooping out of my butt.
I can’t say that any of the UC meds worked for me. I am most grateful to be off the steroids. Even though high dosages of them controlled the UC to a certain point, the side effects were the worst. I was jittery, whacked out, grouchy and lost a bunch of my hair while I was on them, it literally came out in handfuls every time I washed it!!
Now I take multivitamins, probiotics & vitamin D
written by Lisa