I live in the UK and suffer from Gastro Intestinal Neuro Myopathy, otherwise known here as Pseudo Obstruction Syndrome. I believe in the USA it is referred to as inertia, and basically my gut doesn't work! I have had a number of surgeries, the last being in December and was a loop Ileostomy. I am still experiencing problems and it has now been suggested that I have what colon I have left, removed, and my ileum or small bowel joined directly to my rectum (having had my sigmoid removed in 1995). I am worried about incontinence, even though they are going to carry out proctogram tests first. I worry that I won't be able to work afterwards, even though I have always been a very determined person and have carried on throughout it all. I am now divorced and face everything alone, which is not always easy.
I realise this surgery is carried out a lot for CD and UC, but am particularly interested to hear of sufferers of the same problem, who have had IRA's done.
The IA site has been a huge source of support to me since December, but I cannot believe I have found people suffering from the same condition on here. I have felt so alone since this all started in Nov 1987 following 4th laparotomy for endometriosis. I believe they cut the nerves to my bowel, but I have to prove it! People have always thought I imagined it, and the problems are in my head. Thank goodness for my specialist, but it is so hard when not hearing of other sufferers here in the UK.
Thank you for any replies. F1F
As a child, knee probs (patella tendon transfers and knee cap removal)
Endometriosis from age 18 and bowel problems diagnosed as IBS!
8 Laparotomies and numerous Laparoscopies
IVF x 2 (unsuccessful)
Hysterectomy and both ovaries removed in 90 (27yrs old)
Gastro Intestinal Neuromyopathy diagnosed in 91 (known as pseudo obstruction syndrome/slow transit)
Sigmoid and Left Hemi Colectomy in 95. Resulted in 5 yrs of relief!!!!!!!!
Probs started again in 2000, getting worse and worse
Diagnosed with Lupus in Nov 2006 (which they say could be to blame for all this misery!)
Loop ileo in Dec 08 (not sure how it can be slow transit as everything passes through in less than 1 hr! Still have full feling in upper gut though!)
Now considering IRA!!!!! Need advise please! Thx