Left in a limbo while awaiting a diagnosis as your symptoms worsen and your anxiety mounts. Lucy has spent many months trying to establish the cause of her gastric misery, and withstood many attempts to dismiss her problem. Her doggedness has paid off, and she has now secured a diagnosis. But a diagnosis is only just the beginning ….

by Lucy-Alexandra Atkinson

Hello, I’m sorry for not keeping you all updated much this year. I’ve just been waiting for my gastric emptying study results to come through so that I could fill you all in properly & give you a better idea of what’s been going on. I’ve had some ongoing gastrointestinal problems over the last year or so which has made me quite poorly & resulted in drastic weight loss. I’ve been unable to tolerate food very well & have been vomiting a lot after eating & I’ve felt bloated & nauseous all the time. It took me a long time to convince my doctors that something was wrong, and I had to endure these relentlessly awful symptoms for many months before they referred me to the relevant specialists. They kept treating me very dismissively & insisting that there were no concerns. However, I was under 6 stone by the time I saw the gastroenterologist, and he swiftly started referring me for tests to establish the cause. I didn’t know it at the time, but I still had another 12 months to wait before I got any answers. 

I’m now able to bring you all up to speed as I’ve just been given a new diagnosis. Disappointingly, I’ve been diagnosed with gastrointestinal dysmotility with uncoordinated stomach muscles & slow gastric emptying. This means that my stomach isn’t functioning with its normal strength & coordination- slowing down the movements of contents through the digestive system. I’m glad that I now know why I’ve been so unwell & unable to digest food properly, but it’s still disheartening to receive another long-term medical condition. 

Unfortunately, there’s no cure for gastrointestinal dysmotility, and it’s unlikely to get better as it can’t repair itself, but treatment can be offered to reduce the severity of the symptoms. I’ve already had to adjust my diet accordingly- eating only small amounts & cutting out anything that my stomach just can’t digest. I now only eat foods that I know I can tolerate, otherwise I end up with some really unpleasant gastrointestinal problems that I can’t control. This has had a detrimental effect on my weight though & I'm still under 6st with an extremely low BMI. It’s impossible to gain weight when you’re nutritional intake is quite limited though, so I'm now waiting for the dietician to come up with a new plan of action. I'm already on nutritional supplements, which come in handy when my symptoms are really bad and I can't tolerate solid meals very well, but they don't seem to be doing much to stabilise or increase my weight. I don't know what the dietician will suggest, but being significantly underweight is making me feel really tired & weary, along with all my other health problems. So at this point, I'm willing to give anything a try. The Gastroenterologist has also prescribed some medication for me to try, which I'm still waiting for, but we hope it will reduce my symptoms enough to enable me to eat a little more, which should then start to increase my weight slightly. 

Receiving this new diagnosis has been a lot to take in & I’ve found it a bit overwhelming to process. I’ve had to do my own research as the gastroenterologist wasn’t very good at giving out useful advice or information. So once again, I’ve had to educate myself, but that seems to be all too common when it comes to Marfan syndrome & it’s coexisting conditions. He did say that he thinks it’s all linked to my defective connective tissue as a result of Marfan syndrome, so I guess it’s a good thing that he even knows that much. I don’t really know how this condition will continue to affect me, but I hope to gain some control over the symptoms with the help of the medication. Either way, I’ll try my best to regularly update you all from now on. I just didn’t expect to wait so long to be seen or to receive my results. There’s still so much more I could say/talk about, but for now I hope I’ve enlightened you all a bit by revealing my new diagnosis- gastrointestinal dysmotility with uncoordinated stomach muscles which is causing some slow gastric emptying. If you have similar symptoms, I hope it encourages you to get it checked out & be persistent. Don’t let the doctors try telling you you’re fine just because they say you are. They did that with me for far too long! ❤️

Speak soon, Lucy.. X 

As one half of the @Marfriends_teamworkers, Lucy spreads the word on Marfan syndrome through her innovative posts and candid blogs, raising much-needed awareness. She also raises funds for our Charity through her treat-filled raffles and crocheted blankets pictured here. Thank you, Lucy.

The first four installments of Lucy's blog can be found here:

Part 1

Part II

Part III

Part IV

The Marfan Trust is registered in England and Wales under charity number 328070 at c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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