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.
Unfortunately, I was happy to hear my Doctor say I didn’t need to change my eating habits - honestly, I didn’t want to. I just wasn’t ready yet. After my admission, things went from bad to worse, and so quickly. My pain was escalating daily, and it didn’t seem like there was anything I could do to stop it. I had to take a leave of absence from work, and I pretty much lived on the couch, totally dependent on opiates, but not having any quality of life, whatsoever. My Mom (aka my hero) was a tireless advocate for me. She spent her days taking care of me and researching gastroparesis (on top of working full time, that is). Around March 2015, she came across this group on Facebook, Healing Gastroparesis, Naturally. She introduced me to Chalyce and Kathleen, and slowly I started becoming more open to the idea of changing my diet and starting this protocol. It certainly did not happen overnight - it took several months for me to really decide making this change could really help me. During this time I got sicker and sicker, and finally I really had no other option. In the summer of 2015 I decided to really commit myself to the protocol Chalyce recommended. We started to see some positive changes, but I was still very unwell - which is understandable, considering the ENORMOUS amount of dilaudid I was using by that point. It was the equivalent of between 1000-2000 mg of morphine daily. While I really committed to strictly following Chalyce’s protocol, my mom was searching for a doctor to help me get off the pain meds, as we knew they were making me feel worse. My doctors who put me on the pain meds were no help - it was just beyond them at that point. I tried to stop myself, but I would start going into withdrawal, and I was still in pain - I couldn’t put myself through that (even knowing the pain meds were probably causing so much of the pain in the first place). Finally, finally, my mom found a doctor who had a colleague - a psychiatrist who worked with the addictions team at my own hospital, who was willing to help me.
In December 2015 after having the WORST abdominal blockage I have ever had (thanks to C-Diff, which I had several times during my 18 month roller coaster), I was hospitalized to get it cleared up. My psychiatrist came to visit and asked if I was ready to get off my pain meds - it was time! He started me on suboxone, and within two days of being off dilaudid, I was myself again. No pain. No nausea. No vomiting. It was surreal (still is). I was back to myself, and back home after getting my blockage cleared. About a month later I was back to work, and I never looked back. It was key getting off of all pain meds, but I truly believe that I was only able to regain my health so quickly, because of the abdominal healing I had been doing through food and oils. I continued to have a very strict diet in the first couple of months of 2016, and then started adding foods back into my diet. I can now eat pretty much anything I want, without any repercussions - this has NEVER been the case in my life, even as a child. After my last bout of C-Diff in Dec 2015, I dropped to my lowest weight, 97 lbs (my normal my whole adult life was between 130-140 lbs). I started working on trying to gain weight, but it was a slow process. I got married to the most amazing man on the planet in August of 2016, and we found out I was pregnant in February 2017, just before Valentines Day. I am sitting here now with a four month old baby, my weight back up to 125 lbs, which I’ve been working hard to maintain, and a strong sense of gratitude to everyone who has helped me over the last four years. My pregnancy was textbook with no GP complications whatsoever, and my abdominal health has remained to this point (touch wood!). Chalyce and Kathleen, thank you for taking so much of your time to give advice, words of encouragement and a sense of understanding and community during the most difficult time of my life and my family’s life. You guys and this protocol saved me. I’m so sorry to anyone going through this right now. My advice would be to listen to Chalyce (even during terrible times, when it seems like it will never, ever get better). She knows what she is talking about ...I am living proof of that. If anyone would like to talk, please feel free to reach out to me. Lastly, thanks to my Mom. I would not be sitting here, with my sweet baby if it weren’t for you. You never gave up on me. I owe you everything. I love you, mom.