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Need some advice

Need some advice

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Posted by Mei on February 18, 2000 at 13:09:04:

I am 25 and have congenital muscular dystropy. I have been living with it all my life, and have always had physical problems. I also have scoliosis and sit really crookedly in a wheelchair that i have needed since I was 11.

I have been diagnosed with Irritable Bowel Syndrome also.

I don't know much about muscular dystrophy, other than my muscles are affected. Can the IBS be caused by the MD? Could my bowel or stomach muscles be affected.

I have gotten three different responses on that question.

"Mei, because you sit crookedly, your stomach has pressure."

"Mei, your muscualr dystrophy has caused your stomach problems."

"Mei, you have IBS."

I am in my senior year of college and feel like dropping out because my stomach problems are so bad and can't find regular reliable help to go with me. I have been offered jobs, but because of my stomach problems, and because sitting too long in my wheelchair hurts, I have been hesitant on getting a job.

I have been told by health care agencies that they don't believe I need a lot of help because i should wear a diaper, although i don't think my stomach problems or MD problems requir I do that.

I have gone to the IBS web message board and I was told to drink peppermint tea and take anti-anxiety meds.

I was wondering if anyone reading this had some advice or words of wisdom on how to handle any stomach problems that might be related to the MD.

I feel desperate for help on this. I can't swallow pills (although I can swallow food), so taking pills is hard. Please respond, anyone, if it is just words of advice or wisdom, or just words of relating. It'd be nice to know that i was not the only MD person who is going through this. None of the 5 MD kids I went to high school with had this problem, that they admitted to. If they had stomach problems, it was only because they didn't want to ask the bathroom aides at school for help. I didn't mind asking for help, and I still had stomach problems.


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