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@astaingegerdm

@mary0thomas - I’m sorry to read how miserable you are! First of all- don’t even think that you are wasting a doctor’s time!!
Do you have a good gastroenterologist? If not, you have to find one- preferably at a university hospital.
Since you have severe illness in the small intestine you are most likely malnourished. It sounds like you need to get nutrition- proteins, fat, minerals, vitamins through IV feeding. Did you have that before?
You are also bleeding most of the time which will cause anemia- your blood counts should be checked now. The blood carries oxygen to the tissues and help in healing.
Not everyone responds to Remicade. There are other treatments too.
Let us know soon if you have an appointment!

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Replies to "@mary0thomas - I’m sorry to read how miserable you are! First of all- don’t even think..."

I do have a good nurse practitioner that primarily handles and takes care of my visits and operations, and there is an overseeing doctor but I’ve never had a one on one visit or anything to meet this person. I have had blood tests done but they always say I’m practically fine except for the occasional liver readings. I’ve also never had IV feedings even though my ability to ingest practically anything has just gone out the window for the most part. I do move soon so I need to find and set up with a new doctor, and I heard Wash U in Saint Louis would be excellent- but I cannot seem to find anyone in my insurance’s network that works there. Plus I get dizzier and just feeling worse each day. One of the on call doctors just said “yeah that’s your Chrons causing that” as if I was asking for them to look for more things to diagnose me with rather than just saying that I’d like to get better and this method hasn’t been working. I do have an appointment for a capsule endoscopy I believe on Wednesday and I had recent blood work done probably two days ago- but the results that have come out do not pertain to the liver enzymes so I suppose I’ll have to wait for those results