This is interesting.. I was first diagnosed with IBS in 89".
Since then, I have had 5 major surgeries all resulting from a rectal/vaginal fistula (which is still in place along with a bladder/vaginal fistula) and Diverticulitis. I received a call from my 1st cousin yesterday and she states I may have a rare genetic disease that is causing all my gastro problems.. the disease is Hollow visceral myopathy. So far her and her sister have had to have Illieostomies..my self, and now Im finding out 2 other cousins suffer with bowel motility as well.. ??
Last Feburary, everything was made permanent with the Illieostomy..it sucks, Im very depressed about it all. The surgeons have tried to reconnect everything 3 times and used the gricillis muscle from my left leg to patch the hole..nothing has worked..Im in constant pain!!!! I have the most horrible scarring on the inner leg from the attempted muscle repair..aarrgghhh!!!!
OH..and the scars left from the colostomy will not heal properly.. my Drs are not working with me anymore, and Im being forced to seek other methods to control pain levels...
One time when I had the colostomy, I went 13 days without passing anything through..the gastro Dr told me" I can do nothing for you, you have IBS." He further stated all he could do was give me laxatives and pain medicine, and refered me to a different gastro DR. He discovered the Diverticulitis, and thats when all hell broke loose for me. We thought we closed the fistula, and like I said..this past year gave up!