WOW, this link is amazing!! I can see that you ladies have all come such a long way together!!! It's so reassuring to see that I am not the only one with colonic inertia and all the complications!!! I know Rosemary, Karen and Sarah but don't know the rest of you.....yet
I would love to connect with each and one of you as our stories are so similar!
I too had subtotal colectomy (entire colon removed) for colonic inertia and complete rectal prolapse (sounds similar to yours Hoodaya where the entire rectum and anus was blocked from the prolapse). They performed a rectal mucosal prolapse repair and banded it with 14 bands!!! That part of the op was successful, but unfortunately the colectomy only made matters worse! It appears that the bigger part of the problem was rectal inertia! For 7 years i have been unable to eat solids and still cannot evacuate on my own! I too, only eat my soups and soft foods late in the afternoon due to the rectal and pelvic pressure which builds up even on fluids. I do regular bowel washouts every morning and evening to relieve this pressure! They also wanted to perform a STARR but being a nursing sister I had no faith in the particular surgeon who wanted to do the op, so went down south and had another specialist to the colectomy and mucosal prolapse repair instead.
I have a sacral nerve stimulator to stimulate the pelvic floor nerves as I too have no nerve senstation due to pelvic floor dysfunction (tried intensive biofeedback for 1 year with no relief from symptoms).
I regularly have flare ups where small bowel goes into spasm, distends, inflames and cramps and requires hospitalization!
ng1031 I think this is a wise way to distinguish the actual problem! I still think my colon was removed unnecessarily and that the rectum was the problem from the beginning. I too, failed the motility marker study with all the markers still in the ascending colon after day 7 but this could be because there was rectal dysfunction. If you block something at the bottom, it's only natural that the pipes further up will slow down! So, yes, i think this will determine what your problem is and if the stoma works for you then you can safely say that the colectomy should be the answer to your prayers. Good luck!!
I would love to be a part of your special "family" and connect with all of you! The support on this site is really what helps us get through the tough times!!
2005 Total Colectomy for colonic inertia
2006 Laparotomy for small bowel obstruction
2007 Sacral Nerve Stimulator for repeated obstructions
2009 Pelvic Floor Dysfunction / Obstructive Defaecation / Irritable Bowel diagnosed (biofeedback 2 years)
average 2 hospital admissions per year for obstructions