Sunday 3/15/2015 ~ Referral and Acceptance to Motility Program 12/2013

     So when I last you on the medical end of things, I had left the surgeon’s office and he had agreed to refer me to one of the motility programs, that was on October 9th, 2013.  I wish I could say that I bopped off the following week and found the magic cure there, but neither of those things is true.  As I mentioned before motility programs are very specialized programs, and not generally a place you can just bee-bop into and say “hey I want to be seen”.  The program I went to required an extensive referral from a surgeon and then prior to accepting me they actually contacted me to obtain the records from the hospital that had sent me back to my surgeon for the feeding tube.  So it was in fact a “process” but I didn’t care, at least I felt that I was “getting somewhere”!  I sent them all the things they requested and required, and signed all the necessary releases and finally in November I received a call that they would in fact accept me to their program, and my first appointment would be on December 5th, 2013.  I was ecstatic to say the very least!  At this point I was going on three years of hell, with little to no quality of life and to have HOPE at this point was literally like a ray of like being shined down into the dark hopeless hole that I had been calling life.

The first visit was “GREAT”, great in the sense that I felt like I was believed and great in the sense that I had some amount of hope for the first time in a very long time.  The doctor was nice, and to be talking to someone so in tune with what motility meant and what it could cause was like a gift.  She was very honest, and she told me up front not to expect any miracles.  She explained that it would be a VERY long process of testing and trials and errors on treatments and that I should expect to be going there for a least one to two years before we had any REAL progress.  She also told me that the lack of “miracles” meant that I “might” have my tube forever, and that at the very least she would hope to improve my quality of life, even if a cure was not to be had.  She also insisted that I try eating again, quite literally to redevelop a relationship with food.  At this point I had gotten sick for so long from eating without any relief, that my relationship with food had gone from a passionate love affair to an ugly divorce.  She gave me some diet guidelines that were for a “gastroparesis” diet and she wanted me to “try”, I would still use the tube to ensure enough nutrition but I had to try eating again.  I cannot lie, I was scared to death to eat again, but I knew I had to so I took the diet – got the schedule for my tests and made my next appointment which would be in the beginning of March 2014.  That 3-months would give me time to get all the testing done that she wanted to have, as well give the “diet” a chance and see how I was doing with eating.  I was also told to utilize some of the “tricks” when trying to eat such as standing up, and also drinking WITH eating.

Now anyone who has had an RNY bypass knows that you do NOT eat and drink at the same time, it’s a deadly sin in bypass patients to do that.  So for me it was another area of “learning all over again”, going from all of those years specifically NOT eating and drinking together to getting used to that being the prescription.  The tests she wanted were a few different things, there was extensive blood-work obviously, there was also some heart testing that she wanted to get done so that she would have a baseline if she should want to put me on Domperidone later on.  Domperidone is another of the controversial, yet widely used, medications to treat gastroparesis and help increase motility.  The two most common drugs the Reglan (which I had tried extensively prior to getting to the motility clinic), and the Domperidone are somewhat surrounded by controversy because the side effects can be considered serious.

In addition to those tests she also ordered an extended emptying study.  I had in fact had several emptying studies done already over the last 3 years, but they were all 2-hour studies.  She ordered a 4-hour study which gives a much better picture longer term of just how much food the stomach is (or in this case is NOT) emptying over a specified period of time.  Normal emptying at 2-hours is 60% of food remains in stomach, and at 4-hours only 10% is left in the stomach.  My study showed that at four hours I in fact had 84% left.  Hence the ultimate diagnosis of Severe Idiopathic Gastroparesis.    

    During the months from the December visit until I returned the following March I did add back some food, and tried the “tricks of the trade” like positioning and drinking with food.  I was in fact able to redevelop a relationship with food and went back and forth between attempting to eat and doing the tube feeds.  I still had more “bad days” than good, I still had severe episodes of vomiting and overwhelming nausea.  Honestly by this time though I had become so “accustomed” to these as my new way of life that I did NOT go off the the hospital as I had previously.  I was able to use my tube for hydration when needed, I had a generous supply of Zofran to help me manage the nausea, and I had come to terms with the fact that this was the reality of my life.  Unlike in the beginning when I really wanted someone to just “find it and FIX IT!!” I now understood that this was not a realistic expectation.  So over those months I was able to add back some amount of eating, I got all of the necessary tests done that the doctor had ordered and in March of 2014 I was ready to return for my next appointment, get the results of the tests and discuss our next steps.  I was still hopeful and excited about the possibilities.    

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