One of the many things that can arise alongside Ehlers Danlos Syndrome are issues with the gut. And this includes your swallow. And in my case in has. The last few years my swallow has been getting worse and then in September 2017 I woke up one morning and suddenly what I could swallow had declined significantly.
Swallowing issues present themselves in many ways and I am only going to talk about my experience in this post.
There is no definitive answer on why I am having swallowing problems. A few tests have been run, various medications tried and nothing has come up as an obvious answer. My feeling is that it’s just EDS playing around with swallow muscles etc.
My swallowing problems presented in a few ways, mainly one of these three ways:
- Bread, cake and similar textures would go down and just sit in my throat. Nothing seemed to shift them, no amount of coughing or drinking or whatever. It made me feel sick and was rather uncomfortable.
- Food that is bitty or that you chew into bits (rice, pasta etc) would go down and then come back up. This was regurgitation as opposed to vomiting or acid reflux. This also happened a few times with drinks of squash and would happen with any liquid thicker than water*.
- Some drinks go down ok and then they form what feels like a hair ball in my throat**. This feels absolutely awful, it makes it very hard to swallow other drinks and also impairs my ability to swallow my own saliva. This makes it a nightmare to try and get to sleep or do pretty much anything.
*for most people thicker liquids are easier to swallow than thinner ones and you can get thickener to add to drinks if you think this will help you. a lot of fortified drinks are also in thicker textures because of this.
**for me, this included the fortified drinks that you can get which wiped out that route of supplementing my tiny food intake. it also seems to include most drinks with sugar in (so i can drink diet coke but not coke) but we don’t know if that’s coincidence or not.
Needless to say medication became impossible and I got very ill from that and from not being able to get enough energy. A long story later and I now have a PEG fitted which means food goes straight into my stomach via a tube. This means the majority of my nutrition is via the PEG but I can still eat and drink as my swallow allows.
This entire experience has obviously changed what I can eat and drink and I’m planning on writing about that when I’m a bit stronger. In the meantime, I have found that I can do better with frozen liquids. So I can eat a little bit of ice cream even though I couldn’t manage cream. It seems to be about how much I have in my mouth and how much saliva is produced and so how much I have to swallow at once. I also seem to have a certain amount of swallows a day, not literally, but if I have x in the morning then I can’t manage y in the afternoon. If you’ve heard of the spoon theory, it’s a bit like that.
There are also times when my swallow is worse than others – if I’m tired, if I’m on my period etc. Part of my life over the next few months is going to be figuring these things out. I can still swallow some liquids and I want to maintain the swallow function I have. I also want to find a way to include flavour etc in my life and these little tasters like ice cream are one way of doing that. I hope to be able to share some of my experiences and ideas on here, especially given that the majority of information online is aimed at people who need thicker textures not thinner ones!
If you are looking for ideas in the meantime, MaxFacts has a good selection of recipes aimed at people with issues around mouth, jaw and face but which also helps with swallowing issues. My post on soft foods might also be worth a peek at depending on what your particular issues are.