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Sandy's Story
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17 years ago, I noticed blood in my stool with some cramping and diahrea. I went to my primary care doctor who did a sigmoidoscopy and lower barium xray. He sent me to a Gastrointerologist who confirmed his suspicions of Ulcerative Coilitis. The drug of choice for treatment at that time was azulfidine which I was allergic to, and put on the dreaded prednisone. After a couple of weeks with no improvement, I was hospitalized and put on TPN (IV nutrition) with nothing by mouth (including water) and hydrocortisone. This went on for 5wks. until I finally went into remission which actually lasted 5 yrs. with no symptoms.
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When it flared up again, Rowasa was the new drug supposedly great for people with sulpha allergies like mine. Unfortunately, it was not approved by the FDA in the US, but was prescribed in Canada (which is only 90 minutes away). My doctor was great and very courageous. He had a patient whose brother-in-law was a dentist in Canada. He arranged to have the dentist write the Rowasa prescription for Mr.X (my fellow patient) and he would pick up the pills once a month (I know this was il legal but the FDA is very slow and beurocratic with new drugs). My doctor legally could not give me the Rowasa but arranged a meeting with Mr.X at his clothing store. My husband took me to get the pills (1 weeks worth)....I was weak and sick but went to meet Mr.X to do our "Illegal drug deal".....once again I was allergic and put in the hospital on steroid with the same treatment for 6 wks.
Remission only lasted 2yrs. and the next admission showed evidence of a fistula between my vagina and my rectum. Again my innovative doctor and his GI fellow found this tiny fistula by using a blue dye enema and inserting a tampax vaginally. Unfortunately, this changed my diagnosis to Crohns-Coilitis (fistula confirms Crohns). They experimented with immunosuppresents (Cyclosporine and 6MP) ....that got me written up in the medical journal because it got rid of the fistula without surgery.....apparently I was one of the first to try this therapy. I stayed on TPN in hospital for 5 wks. and home on a portable pump for 5 more and I was finally fistula free and in remission for another 2 yrs..
In those days I would have tried anything to avoid surgery....even toxic cocktails and mega steroids which eventually led to two cataract surgeries, hair loss, bone loss and early menopause all by the age of 43.
My original GI retired from practice and now is big in research. His GI fellow went into private practice and I became his first patient. I was hospitalized twice more with the same treatments and finally in April of 99, I gave birth to "Stella the Stoma" by way of a total proctocolectomy and now have a permanent illeostomy.......WHAT A RELIEF!
I'll never need the 'poison that cures'(prednisone) again! When I was first diagnosed with UC I use to say: "At least it's not Crohn's". When they changed the diagnosis to Crohn's I said: "Well, at least I don't have a bag to match my shoes". Now my "bag" means I'm fully accessorized and I say: "AT LEAST I'M ALIVE!"......and LOVING LIFE!
Shaz, you are a great inspiration! Thank you for your efforts!
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