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New to the CCFA Board

Fri, October 30, 2009 12:00 AM

I just wanted to say Hi to everyone here. I was diagnosed at age 12 with UC and lived with it (tolerated it) until I was 35, using only 5-ASAs. Sulfasalazine was my friend. However, I began having worsening symptoms that turned out to be due to a giardia (parasite) infection - ended up in the hospital for 18 days. I really wanted to keep my colon, since I felt I'd been able to maintain things pretty well with minimal meds. But by that point it was too far gone. After two failed attempt to go home from the hospital (both nights before going home, I lost so much blood - I passed out once and almost did again), I ended up having a total colectomy. Two surgeries and 8 months later, I am the proud owner of a j-pouch which has served me well for 3 years now!

Then came 3 weeks ago.... I was in the hall bathroom getting ready to put my 6 year old daughter in the tub when I noticed she hadn't flushed the toilet. And I noticed a somewhat constipated stool speckled with red, and a good sized spot of blood in the water. I said, "Hmmm... interesting." My daughter said, "What? The red poop?" And I responded, "Yes." She followed that up, quietly, by saying, "That's not good... is it?" Things progressed the next few days to very loose, bloody stool.

elmerfudd
Joined Oct 30, 2009

Fri, October 30, 2009 12:00 AM

Reply posted for Elmerfudd.

We were fortunate enough to have our eyes open about UC, and got her into the doctor's very quickly. She was into see the ped GI docs in about a week and a half, and had a colonoscopy and EGD within 2 weeks. The scope and biopsies indicated... UC (big surprise). Biopsies also came back suprisingly showing inflammation in the stomach and small bowel too. We had a number of days with reflux-type vomiting after meals that were worrisome until those results came back. Prilosec seemed to do the trick.

Right now she's doing better - on four meds: Prilosec, sulfasalazine, flagyl, and prednisone (for a few days now). Eating like a horse to make up for lost weight. She actually only lost 3 pounds or so (she started at 42). We are hopeful the bleeding will stop and we can get her into a long remission.

I have enjoyed reading your other conversation. It's so different going through this as a parent than as the patient.

Steve

elmerfudd
Joined Oct 30, 2009

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