Oesophagus dysmotility

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Jendodd
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Date Joined Apr 2014
Total Posts : 15
   Posted 4/19/2014 7:48 AM (GMT -6)   
Hi I have just been diagnosed with oesophagus dysmotility and feel very lost , anyone on here can advise me as to what I have to face in the future? Thanks Jenny

reet22
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Date Joined Jan 2013
Total Posts : 146
   Posted 4/19/2014 8:24 AM (GMT -6)   
Hi Jenny I also have the same problem as you. What are your symptoms? I had the nissen fundop op in 2001. 4 years ago the heartburn pains and nausea started up again, and after being passed around hospitals I was told my oestophagus muscles dont work well & the wrap has tilted causing food to collect. I am waiting for another appointment to discuss re-doing the op. In the meantime I' m told to eat sloppy foods which makes no difference that I can see. Have you been told anything by the medical profession to help you? Best wishes Rita

Jendodd
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Date Joined Apr 2014
Total Posts : 15
   Posted 4/19/2014 9:52 AM (GMT -6)   
Hi Rita thanks for your reply,I must admit I haven't heard of the procedures you are mentioning. Where are you I am in the uk.
My symptoms are acid reflux,unable to swallow solid foods, regurgitation and chest pain.
I have had a gastroscopy and barium meal,and at the moment waiting to be put onto Domperidone and see a dietician.
I am very depressed at the moment thinking this is for the rest of my life living on sloppy food and liquids.
Up until nine months ago I had no problems at all apart from a bit of heartburn , now this.! Fee really despondent. Jenny

reet22
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Date Joined Jan 2013
Total Posts : 146
   Posted 4/19/2014 10:11 AM (GMT -6)   
Hi Jenny I also live in Uk in the Midlands. So sorry to read of your problems. I had to see 4 doctors before I got a diagnosis one told me there was nothing they could do. So i googled to find a Consultant that did the operation I had before ,saw him private but tests done on NHS. You could always get a second opinion because I' m sure something can be done to help you. I have domperidone for the nausea it also pushes the food down quicker. I am sure something must have caused it to you as you were ok 9 months ago.

Jendodd
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Date Joined Apr 2014
Total Posts : 15
   Posted 4/19/2014 11:41 AM (GMT -6)   
Thanks for your reply Rita, good to know you are in the uk.
I will research the op you mentioned, yes the consultant told me too that there is nothing can be done only meds and dietician to help.
I hope you keep in touch as the few I have managed to find with this problem all seem to be in the USA. Are you on Facebook at all? I am and find it good to keep in touch with people, hope you are.
I also have dilated cardiomyopathy with a bi vent pacemaker, I did ask the cardiomyopathy org if they thought my meds over the years may have caused this but they are not aware that they would have done.
There seems very sparse information about it I find.
Hope to hear from you soon, if you are on Facebook please let me know it would be easier to keep in touch.i am under Jeanette Dodd.
Kind regards Jenny

theacidrefluxman
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   Posted 4/19/2014 12:59 PM (GMT -6)   
Hi,

Esophageal dysmotility can be due to a number of things, and be either primary or secondary. To my knowledge the most common by far, especially in GERD, is inefficient esophageal motility (IEM). It is ranked in severity based on testing, from 10% failure rate (minor) to even 100% failure rate. It is sometimes seen outside of the context of reflux (even some with 100% failure rate are found with it but have no GERD symptoms or swallowing issues). Generally the worst dysmotility is correlated to more severe GERD (LA C+D grades or Barrett's), as a rough guide. But at the individual patient level it doesn't always work that way.

People aren't sure if GERD induces dysmotility, or dysmotility causes GERD, or what. Its still an area of study. There also isn't anything that I know of that you can do to improve motility, although I believe treatments are being studied.

The one thing is that dysmotility can be seen in connective tissue diseases, so sometimes additional testing for scleroderma or other things is given. But like I said its not uncommon, as far as I know, to have dysmotility in the context of GERD, and so it being the secondary result of something (like scleroderma) probably isn't something to worry enormously about.

All of that is to the best of my knowledge. I am not an expert.

Jendodd
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Date Joined Apr 2014
Total Posts : 15
   Posted 4/19/2014 1:54 PM (GMT -6)   
Thankyou so much for the information.
I am happy to get any info I can on the subject as my consultant has said very little to me about it .
Regards Jenny

theacidrefluxman
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Date Joined Oct 2009
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   Posted 4/19/2014 3:10 PM (GMT -6)   
What in particular do you want to know?

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 4/19/2014 4:03 PM (GMT -6)   
Hello Jenny if you highlight my name I have put my e.mail address in my profile for you. I am in Wales in my static caravan until monday night and the only wi-fi is off my phone so must keep this short, or will probably loose signal. Looking forward to hearing from you . Take care Rita

Jendodd
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Date Joined Apr 2014
Total Posts : 15
   Posted 4/20/2014 5:51 AM (GMT -6)   
Thanks Rita will do, enjoy your stay in your caravan.
Acidrefluxman,at the moment so much going round my head at the moment being newly diagnosed.
How long have you suffered from this and how do you manage to cope.?
Until I see a dietician I am doing things myself, like having complanfor some meals and mushed up/ sloppy foods for others,
Sometimes the food gives me terrible pain in my chest as well as regurgitation.
During the night I get a lot of acid reflux despite having a wedge pillow to help with elevation.
Can't get my head round all this started , up till nine months ago I had no problems and then just started with bouts of heartburn,so if something suddenly starts can it not repair it self also ?
Sorry if I am rambling , as I said my head it all over the place at the minute.
Regards Jenny

Jendodd
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Date Joined Apr 2014
Total Posts : 15
   Posted 4/20/2014 6:13 AM (GMT -6)   
Rita, have e mailed you, hope it arrives
Jen x

Andy1986
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Date Joined Dec 2012
Total Posts : 1178
   Posted 4/20/2014 7:22 AM (GMT -6)   
I have the same issue. Domperidone does help for me, are you on the max dose?

Another thing i find helps is to raise on my toes then drop hard onto heels, and let gravity pull everything into the stomach.

Try different foods as well, like rice is better than bread or steak. If you have beef have it stewed so it melts in the mouth, things like that.

I think most people o this forum suffer the same sudden onset of symptoms and it is very difficult psychologiicaly as your life is turned upside down. In the end we do tend to find little things that help and sometimes symptoms can disappear as suddenly as they appeared so try and keep a little hope

Post Edited (Andy1986) : 4/20/2014 6:25:43 AM (GMT-6)


Jendodd
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Date Joined Apr 2014
Total Posts : 15
   Posted 4/20/2014 10:24 AM (GMT -6)   
Hi Andy thanks for your reply,
I am still waiting to be put on Domperidone, the consultant still hasn't sent letter to gp and its now three weeks since mt appointment.
I will try what you suggested ,I'm open to all suggestions , anything for relief.
How long have you suffered? And what set yours off ?
I feel at the moment it has taken over my life, I can't think of anything else, have no interest in "normal" life or should I say what used to be my "normal" life! Ours was a very social life always going out to eat which I can't do now. Feeling very depressed .
Thanks again for your reply, Jen

theacidrefluxman
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Date Joined Oct 2009
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   Posted 4/20/2014 11:31 AM (GMT -6)   
I'd say raise your bed with blocks or books, don't just rely on a wedge pillow. Raise the whole bed 6-8 inches plus.

I have been suffering GERD for 6 years and don't manage.

Jendodd
New Member


Date Joined Apr 2014
Total Posts : 15
   Posted 4/20/2014 12:44 PM (GMT -6)   
I will try that with my bed.
Sorry to hear you have been suffering for so long, and it is so difficult for you.
Do you just get the acid reflux or like myself have the motility problem which is affecting eating nd swallowing as well ?

Jendodd
New Member


Date Joined Apr 2014
Total Posts : 15
   Posted 4/20/2014 2:50 PM (GMT -6)   
I will try that with my bed.
Sorry to hear you have been suffering for so long, and it is so difficult for you.
Do you just get the acid reflux or like myself have the motility problem which is affecting eating nd swallowing as well ?

theacidrefluxman
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Date Joined Oct 2009
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   Posted 4/20/2014 8:17 PM (GMT -6)   
Based on motility testing I have severe dysmotility, but I've never had a problem with any food, let alone stodgy food, which is usually what bothers people. Dysmotility can cause problems with acid clearance, and so it can worsen heartburn symptoms and GERD pathology. I might have that problem...especially with clearance...but luckily no swallowing issues. I used to eat meals (and still do) without any drink at all, and oftentimes swallow my daily PPI without a drink to do so.

Be sure to know if your motility problem is idiopathic IEM, or if it actually something specific like achalasia or nutcrackers esophagus.

Jendodd
New Member


Date Joined Apr 2014
Total Posts : 15
   Posted 4/21/2014 4:31 AM (GMT -6)   
I don't get to see my consultant again till July but I'm going to my GP tomorrow so will ask him wether the consultant has said it's idiopathic or not .
Glad you are at least able to eat, that is the part that is really getting me down more than the acid reflux does.
It is certainly one pain of an illness, and not a lot of public knowledge about it .

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 4/21/2014 7:32 AM (GMT -6)   
Hi Jen I am back home now but unfortunately your e.mail has not arrived do you want to try again? I noticed you are getting a lot of help and information from this site, that is good. Best wises Rita

Jendodd
New Member


Date Joined Apr 2014
Total Posts : 15
   Posted 4/21/2014 8:03 AM (GMT -6)   
Hi Rita,hope you enjoyed your little break?
If you don't mind me asking how did you get on with the food/ swallowing issues and did you get to eat out at all?
I have had some replies yes it's good but I did say that publicly there is very little known about this illness , pity it can't be put on a medical item on one of the morning shows to make people aware of it.
I have sent you an e mail again, hope it arrives this time, I think I missed out a letter last time.
Jen x

Andy1986
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Date Joined Dec 2012
Total Posts : 1178
   Posted 4/21/2014 8:39 AM (GMT -6)   
Jendodd said...
Hi Andy thanks for your reply,
I am still waiting to be put on Domperidone, the consultant still hasn't sent letter to gp and its now three weeks since mt appointment.
I will try what you suggested ,I'm open to all suggestions , anything for relief.
How long have you suffered? And what set yours off ?
I feel at the moment it has taken over my life, I can't think of anything else, have no interest in "normal" life or should I say what used to be my "normal" life! Ours was a very social life always going out to eat which I can't do now. Feeling very depressed .
Thanks again for your reply, Jen


Just go to your GP and ask for domperidone saying you have reflux, mine was prescribed by a GP without the specialist saying anything, so they should be ok to just prescribe it. I only really noticed the difference once I went onto 20g 3x a day, was started on half that though - food no longer got stuck on the way down and reflux decreased as long as portion sizes where modest.

Mine all started 2 years ago, it actually started with stomach problems and the reflux came later, but my life pretty much ground to a halt. Drs took so long to even listen to me, they first diagnosed me with anxiety, which I was suffering with as well because I didn't know what was wrong with me! Not knowing and suffering for months sent me into clinical depression, until finally I had a diagnosis, was given the proper guidance and treatment and managed to get my life back on track, that was about 6 months after it started because Drs were just so slow to tell me what was wrong.

I also went through the stage of being able to think of nothing else but the pain, even when I didn't actually have reflux I would just think about it all the time. I put it down to my anxiety and depression, it is a huge struggle to get out of the mindset but the thing that helped me most was going back to work and just focussing on something else. Slowly but surely my life stopped revolving around being ill, and instead I had other things filling my mind without even trying. Its like resetting your minds 'default' thoughts from reflux to something else. Of course that's only really possible once the symptoms have gotten more under control so that should be the first priority.

Eventually, even though I had symptoms (but milder), I found ignoring them relatively easy because I had other things to focus on - interests I could pursue even if I was feeling off (like stuff I can do on my laptop).

If you are ok with runny foods like soup I would stick to that for now, just to get you feeling physically and mentally better. I found that I started super strict at the beginning of my recovery then when I felt better I could be more and more relaxed with what I ate without much problems. But I always ended up overconfident and pushing it too far as well so Id take care!

Jendodd
New Member


Date Joined Apr 2014
Total Posts : 15
   Posted 4/21/2014 10:14 AM (GMT -6)   
Andy, many thanks for your input, I am going to ask GP in the morning to get me on Domperidone even if he hasn't heard from the consultant yet.
What you said about your experience has given me some hope that life can be near as normal again.
I'm very depressed and have anxiety like you were and find the problems are on my mind all the time no matter how I try.
I was medically retired in 2000 due to dilated cardiomyopathy and coped far better with that than this!
Also at the moment I am feeling constantly tired and even when I think I will do something to take my mind off the reflux etc I find I'm too weary!
I do look after one of my young grandsons once a week but to do that I find I have to go to bed very early in case I have a bad night kept awake with reflux.
But I will take on board your comments about thinking of other things and to focus on other things if I can.
Perhaps when the depression and anxiety are treated it may be easier.
Are you now able to eat more " normally" and able to socialise?
I have already in this short time discovered foods I used to love not only I can't stomach I don't even like the taste anymore ,as with wine which I used to love with a meal it now tastes like poison!!
Thankyou so very much for your input today I really appreciate it
Kind regards Jen

GC1pink
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Date Joined Nov 2012
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   Posted 4/21/2014 10:34 AM (GMT -6)   
Jendodd,

Depending on your level of dysmotility you can still have the endostim to help your reflux, you could send your manometry results to Professor Espyach In Germany and he will advise you if you are a suitable candidate.
Hope that you feel better soon!

Jendodd
New Member


Date Joined Apr 2014
Total Posts : 15
   Posted 4/22/2014 4:25 AM (GMT -6)   
Been to GP this morning , he has finally heard from the consultant I am now on Domperidone alongside Metoclopramide which I thought you couldn't have together but my consultant says to do so plus my Rhanatidine at night.
Also been put on a short course of diazapan to help with my anxiety and depression.
Fingers crossed for some relief !
Jen

GC1pink
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Date Joined Nov 2012
Total Posts : 532
   Posted 4/22/2014 7:54 AM (GMT -6)   
Hi Jen,

Glad that the GP has sorted you out- he may not want you on a high dose of domperidone due to the side effects, and that may be why he has put you on a mixture. The diazepam although will help relaxing your gullet will also relax your LOS letting more reflux through as I have this problem.
Do let us know how you get on :)
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