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BamaRN, I was diagnosed in 2006 and told I would die cause

Posted by @dianah in Just Want to Talk, Oct 14, 2011

BamaRN, I was diagnosed in 2006 and told I would die cause there was no cure for this progressive auto immune diease...well I am here to say that has not happened yet. Yes I was very sick about 2 1/2 years ago, but am on the way up with the best help I have gotten from the Drs. @ Mayo in MN. My involvement is in my esphagus, small intestine, and bowel. I have now been on TPN nutrition for 16 months and hopefully be weened off of it soon since I have come from 104 # to 150# and seem to be getting more nutrition from my own intake of food. I also have a colostomy. With diarreha holding me home continually it has truly been a blessing to have a mobile life now. I had some down days at the beginning that had more to do with fear than what I could or could not do anymore...if there is something that can't be done the way you used to do it, there probably is a new way to accomplish it. Yes it is hard for people to realize that since you look ok that you are still sick and have some limitations, my husband as been my "angel." Please keep a good daily log so you can be totally involved with your dr. for your care. @bamarn

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