Face of Rare., This is RARE. -

Fighting Crohn's

When I was 29 years old I started having digestive issues. Pains in my stomach when I ate; having to go the bathroom right after I finished eating and then eating less because I had to go to the bathroom while I was eating. I lost about 20 pounds which was a lot for my 5’0” formerly 105 pound self, simply because I couldn’t hold anything in. I started developing sores from going to the bathroom so much and I couldn’t walk properly and I was in excruciating pain all day and night in my belly which caused a chain reaction down to my calves similar to a sciatica nerve pain.  The doctors did endoscopy and colonoscopy - an invasion of any 29 year old’s privacy. Enimas were supposed to be my new best friend except that I hated them. I cried for a long time going undiagnosed for almost almost 2 years. They didn’t know what was making my body react this way. Finally when I was 30 and over 18 months since my symptoms began, I was diagnosed with Crohn's Disease.   The treatment was about 15 pills a day to keep it under ‘control’. My memory fails me as to exactly what medicine I had to take, which I now consider a blessing. Despite all the meds, I walked in pain, every day, up the stairs to my office wiping my tears so no one would know.  I become depressed and suffered in silence.  Many years later when a new medicine my doctor prescribed landed me in the hospital,  I made a personal decision, against his orders, to stop taking all medications. Why continue when I was still so very sick and now feeling depressed on top of that because the meds didn’t seem to be doing what they were supposed to.   Now, 27 years after my diagnosis, I take small amounts of one medication daily to preempt ‘flair-ups’ and when they do occur, I take meds for about 3 weeks to feel better. I feel better than I did for many years.  For those who suffer now, in particular to my niece who I love and admire so very much, I wish you love, support and hope.

2 comments

  • Sam

    This is so powerful. Thank you for sharing your story with us. Seeing this helps me find the strength to find a diagnosis.

  • Janette

    I knew this was your story. Love you both dearly

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