It was the summer of 2019 and I finally was able to get the approval from the insurance company after a few months of my Temple gastro having to submit forms, test results, and do a peer-to-peer review. So I started to get the entyvio infusions every 4 weeks instead of the normal 8. I was not really happy with this situation as increasing the doses made me nervous for what side effects and future damage I was doing to my body, but at this point I didn't really have any other options. I was feeling marginally better with the new dose schedule, but still not in a place where I could call it a day and say that's good enough, and my doctor agreed. I was still having pain and bloating daily, just slightly more tolerable, and I still had blood and mucus in my stool. Entyvio didn't seem like it was going to be my miracle and my gastro was getting ready to discuss other options ie: surgery.
0 Comments
So I was currently waiting on insurance to approve the entyvio, but as always still looking for better answers. My Temple gastro, recommended I see a motility specialist to try and figure out why I was so constipated all the time. Her specific recommendation was another doctor at Temple, and from what she told me, he was supposed to be literally one of the best in the world, although she did also warn me that he did not have the best bedside manor. At this point I didn't care how the doctor performed as long as he could help me. I called to make an appointment with him and got on his eight month waiting list. I was hoping to hit the ground running with this motility specialist, so I decided to first see a different motility specialist at Jefferson Hospital in Philadelphia, hoping if there were any tests to do I could do them prior to meeting the Temple specialist. The Dr. at Jefferson (doctor #13) reviewed my history and his only advice was to wait to see the doctor at Temple as he was truly supposed to be the best, and I had already completed any tests or medications he would have suggested.
Fall 2017 through that winter was definitely one of my lowest points. I had tried everything I could think of and none of my doctors could produce any answers either regarding why I'm not getting any better, what was going to help me, or when I was going to start to feel better. I was at a loss and tired of trying so hard just to feel normal. Mental breakdowns were multiple times a week if not daily. I wanted a way to make it all stop, to disappear and make the pain go away. I wanted my life back, to be able to be a participant in life, not just watching from the sidelines like I had been doing for over 5 years. I lost hope several times giving in to the belief that this was how it would be for the rest of my life and only the support from my family was keeping me going. This disease is incredibly isolating and hard not only physically, but emotionally. I'm not even sure which was worse, battling the thoughts in my head or my own body trying to get it to work properly.
|