You may know that I’ve had 4 tests to determine the cause of my dysphagia. A couple of weeks ago, I saw my consultant to find out if and what these showed. A common worry among those with chronic illness is that tests won’t show anythings wrong and we’ll be treated like we’re making our symptoms up. You can find out more about this in the Preparing For Test Results #SpoonieSpeak chat highlights post. Thankfully, the tests were helpful and I’ve had my gastro symptoms explained.
I had four tests performed in order to have my gastro symptoms explained:
From these tests, the consultant was able to determine that I have two things wrong with how my gastrointestinal system is working. She believes the following conditions to be linked to my EDS.
I was told that I have Non-Erosive Reflux Disease (NERD), a type of Gastroesophageal Reflux Disease (GERD). If I were a betting person, I’d have put money on me having one of the GERDs (though my previous experiences would still have meant I’d worry that test results were normal). This diagnosis doesn’t have much impact on my life. I’ve been taking Proton Pump Inhibitor that reduces the amount of acid my stomach products for several years now. The vast majority of the time, this controls my symptoms. Occasionally I have to take an extra dose when needed, as advised by my GP.
The other condition has had, and will continue to have, a much bigger impact on my life. I say condition, it’s not really a condition but more of a description of what’s wrong. The tests have shown that I have Oesphageal Dysmotility. This means that my oesophagus isn’t moving food down to my stomach properly. The consultant showed me the graphs and explained that sometimes my oesophagus is trying to push food down, but it’s not always and when it does, it’s not very effective. So food is getting down to my stomach thanks to gravity.
The consultant has said that the only option for helping my oesophageal dysmotility would be an operation, which she advised me against. I’ve been told to ‘get on with it’ despite the pain I experience when eating being intense and lasting for several hours (up to 7hrs). I felt like the pain I experience was being dismissed and became very worried. How am I supposed to maintain a healthy relationship with food when eating causes me intense pain!?! I felt lost and helpless.
I saw my GP on Tuesday and she was shocked that nothing has been put in place to support me. She’s going to refer me to see a speech and language therapist in the hope that they can teach me the easiest way to get food down to my stomach. I’ve also contacted the pain management consultant I saw 6 months ago, in the hope that he can offer some suggestions about managing the pain and emotional aspects. I feel a little more hopeful now.
So those are my gastro symptoms explained. Have you had any experience of oesophageal dysmotility? Do you have any tips for me to help manage it?
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Thank you for updating us, I have been thinking about you xx
Thank you so much, that really means a lot. Xx
Oh sorry to hear that Tania. I suppose at least having a diagnosis is bit better than not knowing at all (as not knowing is always worrying), but being in pain when eating must be awful for you. I hope the speech therapist can do something to help xx
Thank you so much Leah! It’s reassuring to know what’s wrong. At least I won’t be going through the many different possibilities in my head. It was a relief that the tests showed something, but frustrating that despite this I still felt I was fobbed off. I’ve had time to digest the information (haha no pun intended). If speech therapy and the pain management consultant aren’t able to help, I’m going to ask my GP to refer me to the GI consultant in Birmingham who signed off on the tests. I figure it can’t hurt to get a second opinion on management options. I feel a little happier now that I have a back up plan. Xx
Im quite taken back a little that they haven’t offered you any emotional support with this and you’re seeking it yourself.Maintaining a healthy relationship with food is one of the most important things,the pain alone must make you not want to eat anything.I can’t imagine the pain you must be in and the DRs attitude surely can’t be one expressed by many.It really annoys me that people with ongoing complex health issues are told to “manage it”.Who wants to be in pain all the time!Id be inclined to get a second opinion on the surgery,have you researched the pros and cons?Keep us updated Tania,hope you get some better advice X
Thank you so much for this! I sometimes wonder whether I’m over reacting when I feel like I’ve been let down by doctors. It really helps to know that others see it too. I don’t actually know what the surgery is to be able to research it. I was overwhelmed by appointment and doctors attitude and couldn’t think straight. I’m going to make sure I get more information about the surgery at my next appointment, so I can make an informed decision. If the pain management consultant and speech therapist aren’t able to help, I’m going to ask the GP to refer me for a second opinion on management options. The consultant who signed off on the tests to be done locally seemed good, so hopefully he’ll be able to help.
Thank you so much for your support. Xx
there are 2 things I have found helps with this, fishermans friends (I have nasal issues too) helps with the gagging and choking, and fizzy drinks with food. I recommend soda water . no idea why either help me. but they do.
I’m glad you’ve found things to help with your dysphagia. A friend mentioned fizzy drinks to me, but when I asked my consultant about it she said that for me, with my NERD, they are likely to cause more reflux and make my symptoms worse. Xx
Happened by your post as I was laying down (feet up) waiting the bitch out after leaving the dinner table which is not uncommon for me though you never quite get use to it. EDS/POTS, 54, disabled and housebound with three adult children (who are also EDS/POTS). For me the inability to swallow is worse in the evenings. Though sometimes even my ginger turmeric cream of wheat can be a challenge going down. I suspect its EDS related … probably poor muscle coordination in my throat … could be also low saliva (dry mouth). It happens more often than not these days … I eat a bit … then leave the table to go lay down. When the “flare” is over I may get up and try to eat a bit again.
Recently I bought a small misting bottle. Little five ounce thing .. palm size. I use it to help keep my mouth moist. And I’m hoping it will help a bit when my throat decides not to play nice.
Good luck on your healing journey. Know that you are not alone. You can reach me on the blogesphere karmabytes.net or FB.
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Sending lots of love your way! It’s horrible to be in this situation. It sounds like we have slightly different symptoms and causes, but a common understanding of the difficulties. I can’t lie down for a few hours after eating, because I need gravity to help food move down my oesophagus. I’ve learnt from the clinic letter that my oesophagus is hypermobile. The muscles are trying to push food down, but the oesophagus body is too flexible, causing difficulties. I’m always here for you. <3 Xx
My little girl has a rare esophageal condition that resulted in dysmotility. A lot of people with this condition swear by pineapple juice to help clear food that gets stuck. My daughter can’t have pineapple or carbonated drinks but it’s worth a shot. Also, she takes sips of water between bites of food, and that helps flush things down.
I’m so sorry to hear about your daughter’s condition. Sending lots of love your way! I’ve been advised not to have fizzy drinks because of the NERD, but will ask my consultant about pineapple juice. I’ve found that sipping water between mouthfuls has helped me a little. It’s all been very trial and error. Xx