Progress can feel bittersweet, as Lucy describes in the latest instalment of her candid blog:

Hi guys, I’m so sorry for not keeping you all informed. I have so much to tell you, but my condition is so complex I just don’t know where to start. I’ve had a lot to process lately so I’ve just been trying to come to terms with it all.

I’ve been advised by my GI consultant to consider converting my nasogastric feeding tube to a more permanent one which would be inserted directly into my stomach. I’ve made great progress and it would make no sense for me to discontinue the tube. I cannot sustain myself orally now and he wants to refer me for PEG surgery which means that I’ll have a procedure to fit the feeding tube into my stomach. I’m not sure how I feel about this but he’ll arrange an appointment between me and the team who fit the PEG so we can talk about it more.  

This is bittersweet news but makes sense since my gastrointestinal and oesophageal dysmotility are not curable conditions. Because of my dysfunctional digestive system, I’ll more than likely always need some supplemental nutrition through a feeding tube. It’s a big decision to make so I’ve been given some time to think about it, but my consultant feels it would be in my best interests to go ahead with this plan in the near future. I can still eat small amounts of certain foods, but not enough to sustain myself without the feeding tube as my oral intake is quite limited due to severe gastrointestinal problems. I can’t tolerate many solid meals and my tolerance for soft foods varies each day, depending on the symptoms. I wouldn’t survive on my oral intake alone as my main source of nutrition comes from the tube feeds. I know most of you are aware of my situation and that I’ve been receiving artificial nutrition through a nasogastric feeding tube since January, but this blog is for those who don’t know or don’t I fully understand why I have a feeding tube or why I need one. Numerous people have asked me lately if/when my tube is being removed or how much longer it’s going to be in for? I don’t mind people asking. I’m always happy to inform them. But I thought it would be easier to clarify a few things this way, then everyone has a better understanding of my situation. 

I can’t just have the feeding tube taken out. How would I survive without it when I can’t meet my nutritional needs orally? I technically could remove the tube myself any time I wanted to, but it wouldn’t be worth it because I know from past experiences that I’d end up severely malnourished and critically ill in hospital. Isn’t it better to keep the tube to ensure that doesn’t happen again? I think some people were under the impression that the feeding tube was going to make me ‘better’, and in some ways, it has. However, there’s a big difference between that and actually ridding me of my health problems. The tube feeds have helped to stabilise & slightly increase my weight. They are enabling me to get the nutrition I need to maintain the bit of good health that I do have, but unfortunately my health conditions are chronic (long term), with or without the tube. There’s no cure for gastrointestinal or oesophageal dysmotility, and treatment options limited, so whether I like it or not, I have to keep the feeding tube, because essentially it’s my only lifeline. 

I hope this blog has given some people a better insight into my situation, or more accurately, my predicament. I felt it was necessary to make things clearer because so many people have been questioning me about my feeding tube. I don’t mind, but sadly I can’t say that the tube has healed me & I can now have it taken out. I hope you guys don’t mind me writing this. I don’t want it to put you off asking questions if you have any. Please feel free to still ask if you want to know anything about my health, my feeding tube or anything else. I’m always happy to answer if I can. 

Lots of love, Lucy.. 💗 x 

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 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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