I have just joined the site and live in the UK. You will see from my medical history that I have similar probs to a lot of people on this site and am trying to chat with those. Here in the UK we call it pseudo obstruction (or at least I think it is the same thing! I used to get bouts of constipation, followed only by what I can describe as projectile diarrhoea!). I joined the Ileostomy Association, but there doesn't seem to be anyone with a similar complaint. Here in the UK it is very rare and I was the 4th diagnosed in the UK but that was in 1991!
I had a Ileo performed in Dec, but cannot manage it very well and want rid. They say the only alternative is to remove what is left of my colon and join my small bowel to my rectum (my sigmoid was removed in 95), called an ileo rectal anastomosis. Which a few people on here seem to have had done. I am worried about
incontinence and am hoping to hear how others manage (I have to have proctogram tests done first).
I cannot tell you how great it is reading about
others suffering in a similar way - I always feel so alone! I guess most of you are in the US? The UK is such a small place so perhaps there are fewer sufferers?
Jelly, wishing you all the best for your surgery, which I believe is fairly soon! I have an endoscopy the same day, and will be thinking of you!
All the best everyone, 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