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Joined: 03/28/2010
My Story:
I was diagnosed with Crohn's Disease in September 08. I had just started out with what I thought was a stomach bug in January 08, but my symptoms (mainly diarrhea and fever) never went away. I lost 30 pounds between January and September when I finally ended up in the ER for dehydration. I was diagnosed immediately after having a CT scan done. I've had several complications along the way....recto-vaginal fistula, abscesses, blockage which led to a resection, an anal fissure which led to rectal surgery. The Crohn's has pretty much taken over my poor rectum and I just had a temporary colostomy done to see if giving my bottom a "rest" would help it heal. It is the hardest thing mentally that I have ever gone through. My life came to a complete halt with my diagnosis. My Crohn's was so severe by the time I was diagnosed, I had to eventually quit my job as a medical assistant. My social security disability did go through the first time I applied, and for that I am thankful. There are way too many people with this disease that are being denied the benefits that are rightfully theirs. I have two children, ages 9 (son) and 6 (daughter) and a wonderful, supportive husband. I truly hope that this colostomy gives me some relief. I have never been in remission and for the last 18 months my diet has consisted of BOOST supplemental drinks and Gatorade. My body will not hold food for more than 5 minutes, so I gave up trying. Overall, I have lost about 50 pounds. I was getting Remicade infusions for about a year when my immune system finally gave out on me. I ended up spending a week in the hospital the first week of January 2010 with pneumonia and C. Diff. I have not been back for another infusion. My surgeon doesn't want me on it while I have the colostomy, but I may have to start it up again once I have this reversed. Not really sure if it helped much. I didn't really feel any different, but it did close up that nasty fistula that I had. That is where I am at now; just waiting patiently to have this reversed so I can try to live a somewhat normal life. My kids miss their mom and my hubby misses his wife. I miss the world! Ready to be a part of it again:) Ready to wake up from the nightmare that has been my life for the last year and a half. Love this support group! The people on here have become like family to me and I truly do not think I would be sane if it weren't for all of the support that I have received here! Love you guys!

Update-So I had the colostomy in March and by April Crohn's had found its way inside my stoma! I ended up in the hospital for another week. CT scan showed several strictures and a scope through my stoma showed ulcers and tons of inflammation!:( Can't believe it got me that fast! Unfortunately, I had to re-start the Remicade and another couple of months of prednisone. Now I don't know what my surgeon will want to do about reversing this thing. I was just so sure that having the temporary colostomy would finally give my body a break. The good news is that since I have been back on the steroids, I have tons of energy and have gained 10 pounds back! At least my surgeon will be happy about that:)
Update-Now that I have been on the prednisone for so long, I am having a horrible time weaning off of it. I flare as soon as I get down to 15 mg. My surgeon has told me that if I can not get off of the prednisone successfully, he will not have much choice but to remove my colon and rectum and give me a permanent end ileostomy. That news sent me into a deep depression for about a week! I am trying to come off of the prednisone VERY slowly; it is making me a nervous wreck because I feel like so much is riding on this. I am just not ready to have a "bag" for the rest of my life. NOT YET! Will be seeing my GI in October, so we will see what the next step is. I feel a colonoscopy in my very near future, or at the very least....a CT scan:( HATE THIS DISEASE!!!!

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Reply: The Loneliness of Chronic Disease
What inspiring stories of courage! Thank you for sharing this post.
Posted by mindyj1971