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mindyj1971

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: REMISSION!!!!!!!
I am taking Pentasa 500 mg 2 capsules 2 times a day and am still trying to get off of...More
Posted by mindyj1971
REMISSION!!!!!!!
My surgeon called me today and officially told me that the radiologist report said "NO...More
Posted by mindyj1971
Reply: Tests are done:)
mattdamon....I turned 40 in March. I was so sick that day....spent the day in bed...More
Posted by mindyj1971
Reply: frequent urgent bowel movement ulcerative colitis
Hello wnivsh! So sorry for what you are going through. I went through the same thing! I...More
Posted by mindyj1971
Tests are done:)
I'm so glad that is over! As usual....the prep was worse than the test and I had to do...More
Posted by mindyj1971
Reply: Where's Mindy?
Oh, Arbob....I just love you so! I've been posting on other's threads....just haven't...More
Posted by mindyj1971
Reply: Appointment w/Surgeon cancelled......GGGGRRRR
Saw my surgeon on Monday....he did an "exam" and said that he could not see any drainage...More
Posted by mindyj1971
Reply: Remicade
I was on Remicade for 10 months before my fistula was closed....it may take a few more...More
Posted by mindyj1971
Reply: Cold Lunch Ideas
I live mostly on BOOST, so if you have a cooler you could always make up a drink for...More
Posted by mindyj1971
Reply: Crohn's disease and intimacy
Thanks so much, WildAries! I did buy a "wrap" from a place called OstomySecrets....same...More
Posted by mindyj1971