I want to share my story (it’s long, my apologies) in hopes it will offer some encouragement to those going through a very difficult time, as I did a few years ago.
First, I am now 29 years old, and I have cystic fibrosis (CF). I was diagnosed at birth, had an emergency abdominal surgery at 24 hours old, and have had abdominal issues my whole life (respiratory health is good). I suffered with bad constipation my entire life, had “episodes” several times per year where I had terrible abdominal pain, and needed to be brought to the ER (going to the hospital started around age 18).
I started taking enormous amounts of peglyte and peg flakes at this time to help with the constipation, but I could never really take enough to be completely comfortable. I HATED lying on my back, and the doctors pushing on my abdomen at doctors appointments was always painful, even when I wasn’t having a day with any pain otherwise.
In 2014 I started to get progressively sicker. I was throwing up after every meal, I was constantly in pain, always bloated and constipated (even more than usual), and we had no idea what was going on. Thankfully, I was always taken very seriously by my doctors - having CF really helped in this regard. My doctors were stuck - they did not know what to do with me. Every diagnostic test was clean, and they couldn’t understand what was going on. In October of 2014 I was admitted to hospital in Toronto, ON, where I stayed for six weeks. I was put on dilaudid the day I was admitted and stayed on it for 18 months. I was given a GJ tube during this stay, and my GI doctor casually mentioned I have gastroparesis, but didn’t offer any solutions. My parents were steadfast in their belief I should be changing my diet, but my doctor disagreed. He told them because my quality of life was so poor, I should be able to at least enjoy eating whatever I wanted. He told us that if it got too bad, I could just go on TPN. I was 25 years old.