Undiagnosed Digestive Tract Symptoms ... - Bowel Disease Sup...

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Undiagnosed Digestive Tract Symptoms w/Marfan Syndrome


Hello! :-)

My fiance is thirty years old and has a condition called Marfan Syndrome. His presentation of this disorder has been very mild in comparison to other patients but he has had one significant surgery so far and that was a Mitral Valve Replacement. About two months ago, he appeared to have contracted a stomach virus. He had the usual nausea, vomiting, fever, and stomach pain associated with the run of the mill stomach virus, along with severe dehydration and ten pounds of weight loss. His spleen was also significantly swollen, with no obvious reason.

He seemingly recovered from the acute symptoms in a few days but he has had continued pain in the right upper quadrant of his stomach/abdominal region that comes and goes with no particular pattern and has gotten substantially worse over time. The nausea has also not relented and he is having a great deal of difficulty having bowel movements. He 1.) cannot have one at all, 2.) can have one, but it is mainly diarrhea or "rabbit turds" as he calls them (Haha :-)) and there is very little of that.

His primary care physician has run all manner of blood tests, performed an ultrasound and a CT scan, and has found no physical evidence that there is anything wrong other than a swollen spleen. We were referred to a Hematologist/Oncologist, who ran more blood tests and performed an exam. Everything came back totally normal. That doctor referred us to a Gastroenterologist, who performed an upper endoscopy scope. There was some mild inflammation along his digestive tract and the doctor took biopsies. A few days later, a hepatobiliary scan (HIDA scan) was performed to measure the function of his gallbladder and liver. Again, the results of both tests were completely normal. As a preventative measure, the doctor prescribed Protonix once a day and Sucralfate twice a day. My fiance is now scheduled for a colonoscopy later on this month.

On his own, he has tried a liquid diet, removing dairy from his diet and probiotics to no avail. This entire ordeal has been very draining on my fiance. He has not been able to eat, sleep or function normally for the majority of the last two months. He is in constant fear of when the pain and nausea will strike again, as there is no discernible pattern.

No one seems to have a clue what maybe causing this and we are at our witts end at this point. Is there anyone out there that has had or has been a witness to anything with any similarity? Any information would be very, very appreciated!

Thank you.