I had a very wonderful experience today. I met with a new surgeon today, through the OSU system. My GI Dr works closely with him and had filled him in previous about my history and he agreed to take my case. My GI Dr has been really pushing for me to have a roux-en-y gastrojejunostomy done. Which would be a major operation. I was really nervous about this appointment, especially after my experience of being dismissed by the Mayo clinic.
To my surprise, the appointment went amazingly! He listened and really showed genuine concern about me. One thing that was amazing is that I told him about how I was diagnosed with rumination syndrome (RS) and how in October, things had started to changed in my vomiting. RS isn't well know or studied so I expected him to dismiss my concern about the change. I said "I don't know if this makes sense?" He stops and said that it did make sense because he himself has delt with RS since he was 8. I was blown away! He said he hadn't ever treated anyone who had been diagnosed with RS but because of his personal experience, he understood how the change would be concerning. I was blown away! What are the odds?
Anyway, he told me that he is very concerned about the complexity of my case so he is going to reach out to the other surgeons in his group to help him come up with a plan. He doesn't think there is a magic fix but he is hopeful for a better quality of life for me.
Two weeks ago, I went to the Mayo clinic and although some positive things came out of it, I mostly left feeling pretty disheartened. I didn't have a plan and was left wondering what the next step would be. My husband and I both felt we needed to go to Mayo clinic, so after getting home, I was left wondering why I even went.
Well today, I now understand a small portion of why I needed to go. Throughout this journey I have always questioned what my Drs at OSU have been saying. I was always looking for an answer and I was willing to look wherever I could to find it. I felt spoiled by the Drs I had in Utah and all they did for me. So coming back to OSU and having problems again I kept thinking that I needed to find someone else to help me. I went to the Mayo clinic hoping that they might hold the key to my getting better. That they might be able to pull their resources to see something that was missing. In the end they didn't really look at my past testing and said that my anatomy looked great. I realized that they were looking at my health like a snapshot, when I needed them to see it more like a movie. They didn't really know my history and the little details were easily dismissed.
I have recently come to accept the fact that my health history is complex but over this past year I have dismissed that complexity. I live with it everyday and feel like it shouldn't be so hard to understand. I have learned that what might be normal for someone else may not be for normal for me. It is those little details that get lost when you just take a snapshot. I haven't given the dr's here the credit that they have needed in dealing with my care. Have they made mistakes or missed things? Yes and that has been part of what has pushed me to look for answers elsewhere. Today, however, I learned the benefit of being in a place that knows your history and can look at the little details.
I don't know what the plan is for sure but I feel confident in the surgeon and that he will work to help me feel better. He didn't dismiss me and didn't promise me that I would receive complete health again. He did however help me feel at peace about where I am right now in my health journey. He will be an integral part of my care the next few months and it will be interesting to see what happens.
Going to the mayo clinic and seeing what else was out there, has helped me appreciate what I have right here at home. I don't feel like I need to be looking anywhere else for answers right now and that helps bring me peace, which sometime can be one of the hardest things to find when dealing with a chronic illness.
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