Hi - thank you very much for the information!! I am not on any medications and am "untreated". I actually have a metabolism syndrome which prevents me from taking most medicines, so I don't see an easy way out of this...
I have a multitude of other diseases and "mystery symptoms" in addition to those that are still undiagnosed. I have severe Crohn's with duodenitis, ileitis, jejunitis, fistulas, diverticulitis, strictures, and so much more I cannot remember. I also tested positive for Celiac Disease. I have bleeding ulcers and extreme GERD and just found out I'm anemic.
I just last week got diagnosed with a rare and highly fatal GI/vascular disease called SMA Syndrome on top of all of this (you can find this info on Wikipedia under Superior Mesenteric Artery Syndrome). My current and past symptoms are listed in the attached documents. They are quite extensive and I don't expect most to make it through reading it all; but they are there for reference just in case.
I also have Lupus, Sjogren's, and other autoimmune disorders including autoimmune thyroiditis, neuropathy in my feet (paresthesia) of unknown origin, Unspecified Neurologic Disease w/Seizures, and the list goes on and on and on....
I am not on a full liquid diet yet, and am supposed to be on it until everything is corrected. I haven't had any surgeries yet but it is a definite I will have them according to the doctors I've seen.
My most recent doctor who runs an IBD only clinic, took extreme time to research my bloodwork and did a physical exam and very quickly said "This is NOT just Crohn's. This is end stage." We may be dealing with something like cancer.
My Crohn's is even in my mouth and throat, where I have ulcers and pain like I can't describe.
My problem is my case is complex, my body is dying, and no doctor wants anything to do with it. I have so much muscle wasting and weight loss and malabsorption and malnutrition it horrifies doctors, and they say, "We can't help you," and that's the POLITE way - most times it's very traumatic and ends with me crying on the way home. They all say go to a specialty hospital like Cleveland or Mayo or Hopkins but then discharge me without referral. And the application process is grueling. I do now have a referral but am still getting "you're too sick" (??!).
The liquid diet should sustain me a little while until one accepts me but my body is so starved and failing I don't know. The local hospitals just stabilize my vitals and refer me out. I've never seen such a horrible breakdown in our medical care system. The more weight I lose and muscle wasting I have the SMA Syndrome gets worse and will result in total obstruction.
I hope to not be rejected on this forum due to the complexity of my case, but instead to be welcomed, and maybe someone out there has been through something similar. Even if not, I will try to ask simple questions to just answer questions I have when they arise. I am desperately ill and hope to be an example of a fighting survivor, but I will need a team of doctors for that.
This forum is overwhelming with amazing information and posts. Do you have any ones in particular you feel would be the best for me to read first based upon my disease(s)? And if anyone has any knowledge of extremely exceptional doctors/hospitals with an interdisciplinary approach and a diagnostician who can help figure me out, or just a good GI, or anything, I will go anywhere in the country as long as the hospitals have a heart and won't stop fighting to save my life, and are kind in the process.
I do have some home health care. I have a walker as well as physical and occupational therapists helping me getting my strength back. I fill many forms day to day.
Thank you again for your help. My information is attached. Sending my love to both those that are struggling and those that are healthy survivors. <3
