My case has gotten out of hand, and despite research cannot get any closer to a solution.
I've had chronic constipation since childhood but only has gotten debilitating in the last year. However, from when i turned thirteen I began having bi-nightly (appx) "attacks" of abdominal pain so severe I no longer wished to live. It would manifest itself directly under my sternum and nothing would help for around 4 hours or more. After a year it faded away and I never knew what it was.
When I got married a year ago i finally got insurance and went to see a gastroenterologist. I was diagnosed with complete rectal prolapse and sent to a surgeon. He ordered a barrage of tests before deciding on what surgical path to take. The results were the following:
Celiac: I had it tested twice and was negative
Thyroid: also tested twice and was normal
blood test: cell counts, bun, liver, iron, were normal
Gastric emptying: very abnormal....showed marked delay and I was diagnosed with Gastroparesis. i am now taking Reglan
Small Bowel Transit: slightly slow but according to the surgeon not slow enough to merit medical attention
Sitzmarker: normal (which was surprising)
Defecography: showed complete prolapse in addition to massive rectocele and enterocele
CT scan: showed gallstones
On Halloween I had a sigmoid resection/rectopexy, an enterocele repair and my gallbladder removed. My surgeon was surprised because the gallbladder was in terrible condition: inflamed and wrapped in its own membrane. he also described my peritoneal connective tissue as "pediatric"
A week later an MRI discovered blood clots in my portal vein that caused "diminished perfusion" in my liver. I am now on coumadin until June
Because of the clots I had another test. It showed high levels of anticardiolipin antibodies. I requested to be tested for Lupus, but sed rate and ANA levels were normal.
Now (exactly 6 months later today) my constipation is back and I am prolapsing again. My surgeon says my pelvic muscles are functioning fine (I had another defecography) and I am not a candidate for biofeedback.
The difference in the constipation is that I am feeling incapacitating rectal pain, about the length of my middle finger into the rectum. (As disgusting as this is, I almost always have to use my hands-gloved of course!- to manually evacuate my bowels. Stool always seems to be stuck at that length, and will not move despite what effort I put into straining. On occasion I can feel the rectum closing off at the point where my finger reaches. I believe this is the area where my colon was anastomosed and plied to my sacrum because I can feel my pelvis at this point. Perhaps because it was circumferentially wrapped it is causing a stricture? I have had three MRIs and a CT scan, none of which has showed any narrowing.
I spend between 3 and 5 hours in the bathroom every day attempting to empty my bowels. My surgeon has told me to consider a colostomy. I do not want to resort to this until all other solutions are exhausted entirely.
In addition I am chronically fatigues, have been experiencing mild to moderate hair loss for four months (the drs no longer believe that coumadin is the cause of this) severe acne and excessively oily skin. I have small muscle spams usually in my arms and legs. I thought it was because of the reglan I take my for my stomach but a decrease in my dosage levels didn't result in any change.
could I possibly have Hirschsprungs even if the biopsy of my removed sigmoid colon was normal? could this be metabolic/endocrine-related if my thyroid was normal? could it be food allergies?
where should a 22 year old female go from here?
thank you so much for your time. any help is immensely appreciated because my life is becoming more and more affected by this !