Where I Stand/ What We Learned

Alrighty, here's the deal. I flew out east and stayed for 2 weeks, and saw 3 really good doctors at Johns Hopkins. I wasn't admitted to the hospital, because they thought it really wasn't necessary, seeing how I can function and eat and it would have just been a lot of thumb twiddling from a hospital bed. So I got to stay at my parents house in PA, which I loved, and Jake was there with me for most of the 2 weeks. He left on Tuesday to get back to work, and I left this past Saturday. At first, I only had one appointment lined up with the gastroenterologist, who graciously worked me into her schedule. But she got on the phone with other doctors, and had them also work me in while I was out there. That was a blessing, because they were all originally booked till September or later.
   
My gastro doc, Ellen Stein, at the Green Spring Station of Johns Hopkins in Lutherville, met with us on Tuesday the 10th. I was surprised at how young she is, and how laid back and personable she was right off the bat. We had a long visit, with Jake and my Dad also in the room, helping me describe my medical history. She was very attentive and knowledgeable, and brought up some things that she thought I might have. When she first saw me, she said "How did you GET this way??" I guess all the doctors are perplexed as to why I wasn't put on a feeding tube sooner. Oops, that's probably my fault since I fought it till I could fight it no more. She talked to me about what I should be eating in addition to the tube feeding...stuff like hearty fatty meats, stews, smoothies, and lots of protein. She was glad I'm on the FODMAPS diet, which is a special diet for people with bowel issues. It restricts a lot of fruits and veggies that contain excess fructose and things, and eliminates dairy, gluten, onions, garlic and beans.

SO....right now I'm gluten free, dairy free, egg free and soy free. Yipppeeeee! Fun stuff. But that means I CAN eat almond, rice or coconut milk, nuts and seeds, any kind of meat, gluten free grains, some natural sweeteners, and fruits like bananas, berries, grapes and citrus, and vegetables like potatoes, carrots, tomatoes and zucchini. So while it's pretty difficult and limiting, it's good for me and hopefully helping my body get out of this funk!

Dr. Stein ordered a bunch of blood work and tests, a rectal manommetry test and a hydrolyzed breath test. I got those done over the following week, and they revealed that I indeed have small bowel bacterial overgrowth, for which I'll take antibiotics. And I just have a dysfunctional digestive system in general, so I'm going to get something called Biofeedback therapy. It helps one become aware of the body and muscles that are needed and used, and hopefully that will help.

I also saw a doctor in Infectious Diseases, who was nice and very thorough but basically said it's gastro related- not infectious. And I saw a hematologist (blood doctor), who was very helpful and added her ideas and a few more things that she noticed with my lab results, etc. So I got MORE blood taken-and  I swear, I am a pro at taking a needle in the arm now.

So where do I go from here? I will get more iron infusions at IMC since I'm still anemic. I'm supposed to get a bone marrow biopsy test done in the next week or so. I start Biofeedback therapy this week. I continue to follow the FODMAPS diet, and continue tube feeding for probably another 6 weeks. I have orders from Dr. Stein to gain at least 1-2 pounds a week for the next 6 weeks, or else she'll put me in the hospital on TPN. I'll take the antibiotics and then probably follow those up with probiotics. I have a plane ticket to go back to MD on August 25 through September 8 for follow up visits, and will probably get an endoscopy that looks into the small intestine. I'll also see a rheumatologist and opthamologist at Johns Hopkins while I'm out there, since my Iritis is still a mystery.

And that's that.