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Megan and Mark H. Patient Expert

Portland, Oregon
To learn more about us and the other bloggers at jpouch.net, please visit our blog at http://jpuch.net  At our site, you'll find tons of photos and text regarding the journey from living with ulcerative colitis to jpouch. the journey requires surgeries and is often difficult for the... Full Bio
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Jun 16 2009 by ekmanjoan

Congratulations and here's to your health! I was diagnosed at age 16 with U.C. after a sudden attack of severe cramping followed by severe bloody diarreah. So began my 21 years of living with ulcerative colitis. I consider myself one of the lucky ones to have had a disease that could be taken out of me surgically never to be an issue again. Health. I had so many incontinence experiences, the last of which was a couple of days before part 1 of the 2 stage surgery. I was in my car, I had to go and there was no stopping it. All I could do was grab whatever I coulde to keep it from getting on the car seat. I grabbed a book called People Not Patients, all about IBS, U.C. Crone's and sat on it. I thought, "This is the last time this is going to happen", and it was. As soon as I rolled out of the o.r. and was awake enough I knew I was well. It was gone. It. The thing I held onto for so long hoping I would be the one to overcome and be healed, but alas, I had that one last colonoscopy and my G.I. informed me it was time, I was a walking timebomb and he could barely get the pediatric scope in me. No more scopes would ever be safe again due to all the scar tissue from nearly 21 years of disease. I was so sad. I cried at the battle I thought I'd lost. What was to become of me without that part of me, MY COLON!!! I was free. Finally free. I realized the surgery for me was the cure. Cured. Imagine that. I've been healthy ever since. I had the bag for 3 months, maybe 3-1/2 months, then part 2 of the surgery which was a little disappointing because I didn't get nearly the attention I did after the 1st. I remember lying in my hospital bed after the 1st stage surgery one evening and thinking, "I feel nothing...it's like floating on a cloud" because this was the 1st time in all those years I was free of the pain that comes with U.C. Sure, the incision hurt, but it was nothing in comparison, a different kind of pain. I've hiked, done a little travelling, sat in the middle of the row in the movie theater, and the list goes on. So, I would encourage anyone living with Ulcerative Colitis not to fear this miraculous surgery. I did not have any disease in my anus, so that remains intact and free of disease still. I am now 57 years of age and had the surgery at UCLA Medical Center by the chief pediatric reconstructive surgeon, Dr. Erik Fonkalsrud to whom I will be forever grateful. It's important to have a doctor you trust and I did. That was Dr. Edward Feldman at Cedars Sinai Medical Center. He told me when it was time. He had at one time begged a patient to have the surgery and she cancelled it for fear of cosmetic ugliness, but it's just a thing of beauty not to be sick anymore. She died. I live free.

Joan Ekman