Written by Lucy | Gastroparesis patient and advocate
Dear Gastroparesis,Where did you come from and why did you choose me? Idiopathic they’ve said… no known cause…. or was it because I was anorexic in my teens and I damaged the vagus nerve? Either way I’m stuck with you forever.
When you first came into my life nine years ago I thought you were trying to kill me. I’ve always been slim but you made me so thin people started pointing the anorexic finger back at me. Why was it I was never hungry, why was my stomach always swollen, why did I have nausea, why would something like a single peanut put me in so much discomfort…. The gastric emptying study confirmed it was you doing all of this.
Didn’t take long to discover that in Tasmania no one knew a lot about you so I had to ask Siri. She led me to a range of diets all much the same, high carb low fat, small meals, vitamin supplements and so on. I should have known at the time that a diet suggesting crackers, toast and rice cakes wasn’t going to be beneficial when I couldn’t even digest one peanut, however they’re the experts right? Not in my case…..
Not only did you hate all these foods but you also wouldn’t allow me to consume enough of them to meet my calorie intake for the day. You took away all of my energy and I went from someone who could run an ultra marathon to not being able to walk up a flight of stairs without puffing. I was always dehydrated because you wouldn’t even let me drink enough water and I avoided every social event that involved food because the pain I would be in after just wasn’t worth it. My liver hated you, my kidneys hated you and I hated you.
I started giving in to you, only eating the things I knew you would tolerate, things that were cut up small, cooked well, easy to digest and not that dissimilar to what you would feed a toddler. Olive oil and melted peanut butter became my best friends as they were smooth and slippery making everything easier to digest and pushing my calorie intake up through the roof. These tiny meals were packed with the power of healthy fats barely any carbs at all and I soon realised that unintentionally I’d pushed myself into ketosis. Exactly what the doctor said not to do, sorry not sorry… It would seem this is actually when we reached some sort of compromise. I ate this way and you gave me back my power. Back to running, the gym, riding, everything. I’ve figured out that on a ketogenic diet it only takes two 200gm meals and two 250gm smoothies with warm water in between to meet the required calorie intake for my day, which is pretty full on being a mum, grandma, working and keeping fit.
Everyone keeps telling me I’m too skinny, my pre work assessment stated I’m under average weight with above average strength…You’re not in the slightest bit forgiving though, I still have to eat while standing, no dining out, eat slowly, space out meals, not lay down after eating, not wear tight trousers and all those other annoying things. One slip up off the diet can be disastrous like when I decided to try an Optislim shake, you started making me retain water and within 24 hours I looked like I was nine months pregnant. One year on in ketosis with absolutely no supplements and it appears we’re getting along quite well now. My bloods tell the story, kidney and liver function tests back in normal range and my full blood count is all spot on. A list full of vitamin supplements and medication has been reduced to one Nexium tablet a day. No more pain, no more bloating, no more fatigue. I do like to give you a kick though each day with a shot of caffeine pre workout. Ketosis energy is long and sustaining but not powerful for intense training.
So gastroparesis I would prefer not living you but I’ve accepted that’s never going to happen and I’m okay with that, there’s people out there worse off. I’m not going to give anyone out there advice on how to live with you in peace I’m simply sharing our story because I’ve been encouraged to. I’m also not an advocate for ketogenic diets it’s just the lifestyle you and I have evolved to over time to make our relationship work. I’m not against medical advice by any means it just appears that I’ve successfully taken a more natural approach with real food as opposed to manufactured vitamins and supplements. Makes way more sense to eat a tiny nutritional and calorie dense meal when you have a paralysed stomach than one full of empty carbs and then add supplements to it… I’m also pretty convinced that there’s a reduction in inflammation eating this way as the niggles in joints I used to get during intense training sessions are now no longer. Whether this has the same response within my digestive system who knows?
I’m well aware fat slows your digestion which is not ideal for someone with delayed gastric emptying however you don’t seem to mind that provided the food has been prepared in a way where my stomach doesn’t have to do much work.
So I will continue to live by your ever so strict guidelines which are never relaxed at any point in time and in return you continue to keep me off feeding tubes and out of hospital. It’s taken nine years but I’m happy to say we’ve finally reached some sort of agreement here, let’s keep this going… Regards Lucy
P.S. Thank you for allowing the occasional splash of vodka in my smoothie on special occasions, makes me feel semi normal