I was belatedly diagnosed with pseudo bowel obstruction a rare complication of Lupus. It was just by chance when I was in the HDU after my 15th laparotomy for bowel obstruction that an intelligent doctor suggested I see a Professor who specialised in SLE who was engaged in research into SLE and bowel problems. That was 7 years ago. I am so grateful to have met this wonderful man who made the connections no one else had and who has (so far) spared me more surgery. I did in fact have pseudo bowel obstruction and am being successfully treated with Mycophenolate. I am tolerating the drug- I am unsure that I could have tolerated many more laparotomies. All the surgery and the functional bowel problem caused by Lupus mean that my bowel wont empty on its own. Again I got lucky after years of using horrible Picolax and daily enemas. Peristeen Anal Irrigation system saved my sanity and gave me back control of my bowel movement. I wonder how many others out there are undiagnosed?
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