Ok I got my lab report from Enterolab and I have posted the results- comments welcome.
I mostly knew what foods I was having reactions to except the Oats, that was a good one to know because here I am consuming lots of different foods with oats in them. So I am pleased to have that info. I don't think my tests show any major problems with most foods. Happy about this ! Of course gluten I will never eat or dairy & now oats.
I had my G-J tube placed last Friday, and omg what a nightmare, I have PTSD from the whole experience. They placed the feeding tube and while in the recovery room the tube became dislodged and I starting bleeding internally. The whole thing had to be removed and the surgeons had gone home as well as the anesthesiologists.
A floor doctor came over to me and asked if I wanted to wait 4 hours till those docs came back on or did I want him to remove the G-J tube, I asked how painful would be and he said it would be very painful. I said take it out anyways, he told me to take the blanket into my mouth and bit down real hard, I shoved nearly that whole blanket in my mouth in hopes it would somehow limit the pain. It didn't - it was horrid. But he got it out, I passed out after and I have no memory of the next 24 hours. They heavily drugged me and kept me in the hospital for 3 days.
So now move forward a week, I am 85 pounds and all my blood work is way out of range and I am going down hill fast. Yesterday they spent over an hour trying to get a feeding tube in my arm, after several punctures I was told the picc line can't be placed due to my nerves and vessels ( Ehlers Danlos problem) . So as a last ditch effort to save me they are using my port that I use for IVIG. I was told to never allow TPN into that port, but I have no choice.
I was told while in the hospital for those 3 days my stomach was in severe shape, it is elongated and lays in my abdomen. This is from the Ehlers danlos. My bowel is also not where is should be. UC Davis is saying this TPN I am on now is only a bridge, they want to attempt another type of feeding tube into my intestines in 3 months. I am not sure about this, need to research it.
That's my update, I am sharing this info so people can understand that having MC is not a trivial matter, it CAN be life changing especially if you have other health issues.
I am still trying to figure out how much steroid I need or I should say how little I need, because for sure 2 pills causes too much C. I am taking M of M everyday so I can fight the C. Too much of that and I have hours upon hours of WD. the GI doctors should be providing better guidance in regards to this but I found them useless. We are on own- Grateful to everyone here for sharing their journey .
Hugs,
Rebecca
