Hopkins

After 6 months of waiting I finally had my appointment at John Hopkins on June 24th. Overall my appointment with Hopkins went well, I saw a team of doctors in their clinic not just one gastro doctor. They thankfully DID NOT want to just repeat every test I've had and they DID NOT just jump to saying I need surgery to remove my entire colon!

The team approach was much different from any other appointment I've had with the parade of doctors I had already seen. They explained my body is in an extreme state and they developed a course of action to start to rehabilitate it. It will not be easy or a quick fix but it is what my body needs. They want to admit me to their in-patient program which means I will stay there. There is no exact time frame of how long I will be there. It is a case by case basis. They said typically at least a few weeks but it can be several months. Dismotility, aka lack of motility through my GI system, is the core problem contributing to all that is not functioning with my body. I'm stuck in a vicious cycle of my body not getting the nutrition it needs, being so underweight, my GI system not functioning, experiencing chronic pain, the pain interfering with nervous system function, causing other system of the body does not function right aka not sleeping. Their plan is to repair and rehabilitate my GI function NOT remove my intestines.

When I explained my insurance situation, that I would lose health insurance as of next week, they did not hesitate, they said we will figure out a way around it. It may mean admitting me a round-about way through the ER instead of how they typically admit people but they aren't letting the insurance stop my need for care. It was a lot to take in and Its not easy, I'm definitely worried. It took a long time for my body to wind up in the condition it is in, so I know it will take a long time to repair it.

Their confidence in being able to treat and restore my body gives me hope. They said my condition is not something common, but they have seen similar cases of Functional Gastrointestinal Disorder before and they have rehabilitated them. They were honest and straight forward and said they wouldn't tell me that they could help me if they really didn't think this was something I could recover from. 

I have accepted that I cannot continue to live in the condition I am in. I weigh less than a 10 year old child and I've been this at this weight for a year now. All of the work I'm doing for my body preparing and cooking all my own food, blending and pureeing all foods, and all the supplements I'm taking to replace what I'm deficient in is not making a difference. It is past the point of my control and I know my body needs more than I can give it. It's not easy, but I recognize that this is what I need to do for myself. It is worth dropping my life and getting the treatment I need if it will save my life.