Monday 3/16/2015 ~ March 2014 Visit at Motility Clinic

     In early March of 2014 I returned to the motility program for my follow up to the December visit.  During this visit we discussed the results of the tests, we talked about my good vs. bad days, and just health in general.  Once she had given me the diagnosis of the severe idiopathic gastroparesis based on the four hour emptying study, she told me that she did in fact want to start me on the Domperidone.  I have to admit that I was a bit fearful of taking this particular medication due to the risks involved regarding your heart, but I was also willing to try anything and so I agreed.  I would have to have another EKG before starting it, and then another 2-weeks after being on it to monitor my heart for any impact the medication may have.  All of those things were scheduled, and her office had arrangements made for the medication to be shipped to me.  Technically speaking this medication is not “approved” by the FDA for use in the united states and therefore cannot be just “picked up” at your local pharmacy.  

During this visit we also had a discussion about bowel movements, and/or the lack thereof.  I am not going to go into details about that because it’s just a difficult subject, but suffice to say that part of things did not seem to work well either.  I think it’s relevant to note here that over the prior 3-years I had this discussion with my surgeon MULTIPLE times and it was never addressed.  Based on our discussion she did some preliminary testing and she felt that I may have a certain type of “constipation”.  Unlike the more common standard types, of not enough fiber, hard stool etc., what she was ‘thinking’ at this point my issue was was some combination of colon inertia and/or pelvic floor dysfunction.  Short version is that there is some kind of compromise with the the muscles/nerves etc. that are needed for normal bowel movements.  If in fact that nerves and muscles are damaged in addition to the paralysis of the stomach then clearly the movement of food through the digestive system becomes even more difficult than if you suffer just one or the other.  She ordered an Anorectal Manometry test to help further diagnosis any issues and or damage to the bowels.  This is a somewhat specialized test at the facility I was attending, (I am unsure if it is more ‘common’ at other facilities), but at this program the test was available on a very limited bases and the next opening they had for this test to be done was on July 28th, 2014.  It seemed like quite a wait from the March appointment, but overall I was still happy with the way things were progressing.

For the first time in all these years I not only a doctor who believed the troubles I was having were not “all in my head”, but she had actually started to form a comprehensive diagnosis and we had a treatment plan that was moving along.  I was far from cured, I still had miserable days, I still struggled and it was not even close to being a distant memory; but I had hope.  I had a diagnosis, I had a doctor who believed in me, and for the first time in 3-years I felt that life was actually worth fighting for again, what an amazing feeling that was!  Tune in tomorrow to hear about my experience with Domperidone, and as always thanks for stopping by.


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