I am an 18-year-old girl. I am experiencing some strange GI symptoms. I am chronically ill and I have postural orthostatic tachycardia syndrome, mast cell activation syndrome, Ehler,s Danlos syndrome, and complex regional pain syndrome. About two months ago, I was in the ER with severe abdominal pain, I got workup that came back negative. I was referred to GI who told me that I had functional abdominal pain syndrome. Later it was proven that I actually had a kidney stone. Since that ER trip, I have been having tons of GI symptoms. My symptoms are early satiety (I am literally full two bites into a meal), lack of appetite, nausea, vomiting almost every meal I eat, and minor stomach pain. My current GI thinks that I have anxiety and I am doing this all for attention. I have lost a ton of weight, way too much to be healthy. If anyone has any ideas or guidance or suggestions, I would greatly appreciate it.
Welcome to icliniq.com.
I can understand that it must be terrible for you to have these problems with their consequences. I might give you some suggestions based on my knowledge about the conditions you mention.
EDS (Ehler's Danlose syndrome) is a problem with skeletal muscles that can accompany disorders of smooth muscles of gastrointestinal tract (GI tract) and hence can cause constipation vomiting, loss of peristalsis (a coordinated contraction of smooth muscle of the bowel to push the food and stools). Therefore it is not uncommon for patients with EDS to develop such symptoms.
Secondly, due to stasis of bowel, development of excessive bacterias which produces excessive gases which could further worsen the situation. Lastly, there are certain other set of disorders which can affect only smooth muscles or nerves of the small and large bowel they are collectively termed as neuromotility disorder of the GI tract. These disorder can occur isolated or in association with other problem like EDS as I am your case. They can cause almost similar symptoms as you have at moment.
There is enlargement of the ureter and calacyxs of kidney which collects urine from the kidney which then can develop stones within it because of stasis of urine.
The best way to approach all the above problems is a CT scan of the abdomen which would highlight all these problems. I hope that you may not have any of those in that case the treatment would be easy forward. If you have CT scan already you can share the report. There is some specialized testing for checking the nerves of the small bowel as neuromotility disorders, but that test is only done to confirm the disease not for screening.
Follow up to discuss in detail.
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