I'm so thankful I found this forum, as I've had ostomies very much on my mind lately. I apologize in advance for the length of this but I need some advice and want to get as much detail as I can out there.
I have dealt with constipation essentially since childhood, though I never saw a dr. When I was 13 I suddenly started having truly terrible pains that I felt first in my back but would rotate into my sternum. They would last for 4-5 hours and there was nothing I could do or position to assume to calm it down. They lasted for nearly two years keeping me up all night appx 4 days a week
about a year ago when I got married and got insurance I finally went to a doctor for the constipation. He ordered Colace, which didn't do anything. I took that, milk of magnesia, prune and prune juice....etc.
In July I went to my new dr who thought my gallbladder felt funny but didn't follow up on it until one morning in august I looked jaundiced. I hadn't moved my bowels in a month so I bypassed my PCP and went to a gastroenetologist, who found complete rectal prolapse and reffered me to a surgeon.
He ordered a barrage of tests before deciding which surgery would be the right one. These were the results:
*Celiac (tested twice) was negative
*stool sample was normal
*Thryoid was normal
*BUN, WBC and RBC normal
*Liver fxn normal
*Gastric Emptying exam.....bad. showed marked delay. I was diagnosed with Gastroparesis
*Small Bowel Transit....somewhat slow but was told it wasn't slow enough to merit medical attn
*Sitzmarker.....surprisingly normal. No colonic Inertia
*CT scan........biliary colic with many gallstones
*Video Defecography....massive rectal prolapse, rectocele and enterocele.
On Halloween I had a sigmoid resection/rectopexy, an open-abdominal enterocele repair and a cholecystectomy. The surgeon also described my peritoneal connective tissue as being "pediatric".
then an MRI found blood clots in my portal vein and put me on a 6 month regiment of coumadin. I got a blood test to see why I clotted and high levels of anticardiolipin antiobodies were found. They then tested me for autoimmune disorders (lupus, for example) but everything else had normal levels
THEN (lol....sorry) I started having excruciating rectal pain and a return in constipation. My gastroenterologist put me on zelnorm in addition to the reglan I was already on for the gastroparesis. She also presribed miralax which I take daily.
Still none of the above has helped, and the rectal pain is getting more severe with a return in prolapse. I spend between 3 and 4 hours daily on the toilet. (At home I now keep my laptop and a portable dvd player in there!) Maybe it's related to the stress of it all, but I've also started losing hair, and suddenly have acne and terribly oily skin. I also have had severe fatigue (almost narcolepsy really) since I began college.
The surgeon said I am not a candidate for biofeedback therapy because my pelvic muscles function fine, and said I should consider a colostomy if I'm in such pain.
which FINALLY brings me to my question. without having an obvious disorder....is this an overly aggressive approach? I am only 22 years old, and I am a fitness competitor so otherwise I'm in fantastic physical shape with a clean diet. it seems as though I should have an actual physiological merit of a colostomy.
any thoughts? (sorry about the length once again!)