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Would like to talk to other people with rumination syndrome
Digestive Health | Last Active: Aug 6 2:35am | Replies (21)Comment receiving replies
@ethanmcconkey I really have not had any chronic conditions unless you consider things like Barrett's Esophagus and Diabetes to be chronic, which they are but they are diagnosed and treated.
@mmacnelly I am so sorry that you and your wife are going through this. What did Mayo suggest when they diagnosed it as rumination syndrome? I just googled it and it sounds as if biofeedback is one of the ways to deal with it. It sounds as if that diagnosis and the more recent one of chronic pancreatitis are in conflict. If it is chronic pancreatitis what can be done for that? She is way too young to be dealing with such a chronic condition and not able to work or function well. I hope you find some relief for her, from some doctor. If the strategies for rumination syndrome did not help her then it could be chronic pancreatitis, in which case I would think that there might be a more actual treatment for it, but I am not familiar with pancreatitis so I really do not know.
I presume you have sought out different opinions from other gastroenterologists, hopefully at another large medical center. I am sure you are actively pursuing a diagnosis and help for her. Please keep us up on her progress.
JK
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I wasn’t with my wife when she was med evacuated to the Mayo Clinic, so I’m not sure exactly what they told her for treatment. I know she did come back with a meditation plan, I guess they had her listen to some calming music and meditate whenever she had symptoms of vomiting. It was weird, but we saw results and to be honest she still meditates to this day when she feels sick. I don’t recall her having abdominal pain back when she was diagnosed from the Mayo Clinic. I think she didn’t start having the abdominal pain until 2009 when we were living in Georgia. We lived in Georgia for 8 1/2 years and I was in the Air Force so we had to get approvals to see doctors from the military. It wasn’t easy and we didn’t have free reign to just go to anybody we wanted. Tricare only covered certain hospitals, but most of the GI doctors we saw were down in Jacksonville, Fl. Doctors ran tests on her and unfortunately weren’t able to find anything really wrong with her. They all said her organs looked good and she just had elevated levels, they did numerous endoscopy’s and colonoscopy’s, MRI’s, they did an egg test with barium, X-ray’s, they even did a DNA study to look at her chromosomes. They found out morphine doesn’t work on her at all as she lacks a certain chromosome needed for morphine to work. Basically, we’d see a doctor for months and months and month up into the point where they’d run out of ideas and recommend us to someone else who they thought would be better help to her. Now when that would happen, I’d have to go talk to a military doctor to let them know what was up and start another process to get approvals to see the new doctor. Sometimes that would take months before the approvals went through. I’m not sure if the abdominal pain relates to her rumination syndrome. I guess I really need to give you all the back story to how all this started.