Prolapsed Double Barrel Stoma and past experience

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Date Joined Feb 2007
Total Posts : 1
   Posted 2/19/2007 10:31 PM (GMT -6)   
To basically make long story short. I am now 30. When I was 19 I have a Nissan Fundoplication on my stomach due to severe GERDS. At around 25 I started to loose more weight and was able to stay about about 105 from 2003-04, I am 5' 6". It always was difficult to eat, I started to spend night upon night being nauseated. I figured I just had a weak stomach.

In Oct. of 2004 they discovered that my Large colon was in a shape of an M inside me, that my bladder retained to much water and I have intestinal nerve damage all the way to the rectum. I have not menstruated since 2003. A series of 6 doctors were put together for me at a large hospital in the city. I have had an IPG inside me for bladder retention (which I now chose to remove this last December). It is a box that stimulates nerves in your back to reconnect to the brain. The technology is so new, it didn't work well and then the battery died in me.

In August of 2005 they revamped my insides with a 1ft colon resection, the Mascxhowitz procedure to uplift my small intestine, rectocele repair and pretty much lifted everything they could. By the time the opened me up I exploded. I was about 93 pounds by this time, by Jan. of 2006 I was able to get up to 98, I was cold and weak all the time and finally had to leave my job in Nov. of 2005.

I went back to school but showed little improvement in my health. I think the most devastating thing of this is not being able to work, I have been working since I was 14, I love people. I was a teacher for over 4 years in my early 20's and after being so exhausted went into sales so I could sit more during the day, unknowing to me that I had organs out of place. I have worked in sales for over 5 years, working with families in CA and later had the pleasure of selling senior housing before I had to leave in 2005.

I spend the summer of 2006 with my Mother at the Cleveland Clinic, and after seeing 5 specialists there, and as I was told that an ileostomy should be the last resort, I chose that option. I tried bio-feed back at home before my ileostomy in Oct. of 2006, I have been doing pelvic exercises since I was 15. The more bio-feed back I tried the more pain I was in.

Now my weight is almost up to 115, and my ostomy has allowed me to start working part time, though I have been working with kids 2-12 and it has become to exhausting from everything I have gone through. I wanted to ask what are some of the best professions for ostomates?

The last few weeks I have had a prolapse of about 5 to 6 inches almost nightly and my surgeon is taking my double barrel stoma, into a more "mature" stoma this Tuesday. I am so surgery-ied out. My poor parents keep flying back in forth from a thousand miles away and my husband is as supportive as possible. Is it common for stomas to prolapse?

The surgeon said that my inside are just weak, so every stitch that he does seems to fall. He said the surgery from 2005, the stitches held but the organs have prolapsed around them. The only diagnosis I got from the Cleveland Clinic was animus. My muscles do the opposite which they believe causes the organs to rearrange themselves. I have no diagnosis from the elasticity of my tissue.

Anyone that has had a similar experience, please share with me how you moved on, what activities were the most comfortable, when did you go back to work and when did you feel like yourself again. I am recovering from my revision nicely, they took off 6 inches of the small intestine because the prolapse was so weak. Has anyone had a prolapse, what are the chances?

Thanks again for listening and supporting eachother.
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