First time starting a new thread!

I’m an Adult with OA born and operated on in 1975. I have recently been diagnosed with Dysmotility of the Oesophagus, following two Gastroscopies, a Manometry and a Barium Swallow.

What this means is there is no muscle power in my oesophagus. From speaking to the specialist this is a common occurrence with OA patients.

Has anyone else gone through this? How’d you get through it and are there any tips on food stuffs to eat, as at the moment, everything gets stuck.

Nice to know I’m posting this where people know what I’m talking about.

Mark

PS Royal Hallamshire Hospital in Sheffield, is a National Specialist Centre for Oesophageal Surgery. I got there through dissatisfaction in my local hospital and then via Choose and Book at my GP. They were brilliant and really knew what they were talking about - even if the prognosis could have been better.

Hi Mark,

That is wonderful you have written, it so nice to hear how adults with this condition are going.

My daughter is turning 10 this year she is a tof/oa, her stomach is 14cm from her lips. Her little piece of oesophagus that goes to her collar bone has had no motility for a couple of years now. 

Bernadette chews gum, our pediatrician told us this was great for tof children because saliva is so important for digestion.  She only chews juicy fruit or bubble gum, I do not give her products with asparatine in them. If there is lots of saliva the food gets pushed down:o) seems to work.

She just had her 44th dilatation before Easter, the doctor said she is the healthiest little tof child he has ever seen, this was great news but the best thing was that they don’t expect she will need another surgery for at least 6 yrs. Her anastomosis is very flexible, but he did say she needs to chew her food really well because of the dysmotility.  She has not reflux problems and no other inflammation in her stomach or bowel.

We have been using an amazing health product for 6 yrs now and I was blessed the day I was introduced to it.

It is great to hear from adults, thanks!
Delyse

Hi Mark

Hopefully some of the other adults can help you from a personal perspective. Jack (4) has no motility in his os either. He chews food like you wouldn’t believe and always drinks alot with meals. One or two mouthfuls then a drink. He needs to eat slowly so we make sure he doesn’t get too hungry and then try to wolf his food down.

If he is having trouble, particularly if he has a cold, we change his diet a bit. Less stodge like bread and more crackers which move down easier. He usually has mince or slow baked casseroles for meat and manages well with that. When he has bread it’s always a grain one as white bread is too stodgy. The only thing he misses out on is a steak or chop. I tend to cook sloppy meals with veg included, spag bog, chilli con carne etc as he manages those the best.

I would be wondering what has changed for you (or have you had this problem for ages), do you need a stretch? That’s how we know something is wrong with Jack, he doesn’t manage the food that he has been eating successfully for ages.

I read here that smoked salmon is good as it slides down. Jack now adores that, costs me a fortune, but I’m happy to buy it.

Hope things start to improve for you
Jody

My oesophagus is dysmotile over the bottom 2/3. I never eat without a drink accompanying otherwise stuff gets stuck, and I’m careful about bread, pastry etc as they make me wheezy. There are some drugs that can increase oesophageal motility- I think azithromycin, metaclopromide and disofrol of what I’ve tried are supposed to have some effect on that.

Hi I am in my late 30’s and never had a dialation etc but I always have a drink with food it doesn’t matter what it is. I can eat without a drink but it sometimes sits in my upper stomach area (I suppose) and gives me indigestion.  I have a long gap OA too and childhood was hell on earth - painfull spasms and now looking back I think it was being tense around eating and the nerves surrounding that area tightening up.  I also have problems with food but I think it might be more a food intolerance rather than what I was born with!

I cannot eat CHIPS and if I do ever eat them because when you are out at a restaurant sometimes a meal comes with chips whether you have asked for them or not.  This is what happens they go down alright but even with a fizzy drink afterwards perhaps several hours but usually during the night they will either come up and make me sick or give me heartburn.  This also applies to some chinese food and what I would call greasy spoon food…  So I suppose it is good in one way because I have to eat a healthy diet.  Also spicy food if it is too hot I sometimes lose my voice has anyone experienced that before???

So I live with this condition and I try to live a very normal life I was medically cleared to be a Army Cadet instructor and like so many people who are born with this - yes we might not be as strong in some ways but we make up for it in others.

Would love to hear from people who have similar eating probs is it OA or is it food intolerance.  My ex consultant said greasy food is hard to digest and it could easily get stuck but I have read my symptoms could be vegtable oil intolerance.

I think the losing voice thing is reflux onto your vocal chords. Mine is always hoarse after a bad episode of reflux, though it’s never gone completely- though I think my larynx is at the point now where I’m hoarse all the time from long term damage. The spicy food worsens reflux then that inflames the larynx. I’ve been suffering with sinus pain for a few years now, and have realised thanks to a bad episode last week that it is partly due to refluxing into my sinuses when bending over. (bad decision of doing exercise too soon after breakfast…) I think the problem for a lot of us is that instead of being a muscle barrier to allow food one way only, with a valve at the top of the stomach, ours are basically big tubes open both ends with no barrier to going the wrong way. I’m on antacids (lansoprazole twice a day and ranitidine at night) but my consultant says this only neutralises the acid in the reflux rather than stopping the reflux- so what comes up isn’t acidic but not particularly friendly to your innards anyway!

Hi Cazz - thanks for the reply.

The horsey voice could also be an underactive thyroid condition.  I reckon now I may of had this for a very long time but wasn’t diagnosed until I had my middle child.  It was a colleague that I worked with who had very similar probs and she said go and have a blood test.  The rest is history as they say.  I didn’t realise the thyroid controlled so many things and swallowing function is one of them.  This ex consultant mentioned this to me and said that if you have problems with your thyroid this can cause difficulties swallowing and also cause a deepening of the voice as well as lots of other horrid things.
Hence my swallowing is a lot better after taking a thryoid substitute tablet everyday.

I try and steer clear of spicy food even some savory food especially onions and garlic can have dire consequences.  I try and keep all of this into perspective though in that a lot of people I know who are not TOF or OA have acid reflux even more often than me and have food intolerances.  My Gran and My Mum cannot eat certain foods so it is probable a inherited food intolerance rather than this condition. 

I sit propped up in bed as a precaution, I try not to hoover etc after a drink of tea or coffee as otherwise the liquid shoots back up!!!

I find a hot drink hurts the join in my throat so I don’t drink hot liquids which peaves other people who can’t understand why I let a nice hot drink go lukewarm lol.

Oh and I stopped Omeprazole a little while ago after taking it for about 15yrs because of the many side effects it has and .... little change in the effect of acid reflux basically because I have changed my lifestyle to accommodate it.  I also don’t drink or eat after about 7.30pm the only thing which I can have without it coming back later on is a beer or other alcoholic refreshment!!!

So you can manage this condition and yes it may be querky but look around and see how the general pop handle acid reflux….