Bentyl helped my Achalasia
Posted , 6 users are following.
Hi,
I put in a reply about this as well but wanted more people to see it. I have had Achalasia for several years. I saw two doctors about it and had the POEM. The POEM only helped me a little. After all this time, I found a new doctor, and she prescribed Bentyl for me. It helps tremendously. It's not a cure, but I would say it has stopped the burning pain by about 90% . I also eat a low fat, low acid, and mostly gluten free diet.
Cheers..
0 likes, 12 replies
karen05736 ashley99970
Posted
Do you have any back pain with your Achalasia?
ashley99970 karen05736
Posted
Hi,
Sometimes, I did feel very mild pain in my upper middle back where the esophagus pain would radiate. My doctor said it's common to feel esophagus pain in the upper middle backI also have lower back pain, but that is from not sitting properly.
manu44396 ashley99970
Posted
Hi From where did u do your POEM surgery??
ashley99970 manu44396
Posted
Hi,
I got it at UH Case in Cleveland. Fantastic experience because they took such great care of me. My doctor was Dr. Jeffrey Marks. He is the kind of doctor who will talk to you on the phone or by email to answer questions even before you schedule with him.
All the best..
AlanJM ashley99970
Posted
It is good that the Bentyl has helped. It is used as an anti-spasmodic drug, apparently. Spasms are a curse for some people with this condition, and for some the spasms are not relieved by the surgery.
For a lot of people the texture of food makes a real difference, avoiding food that is stringy, or with difficult skins; or food that congeals easily.
karen05736 ashley99970
Posted
I had a POEM AT Emory in ATLANTA. It did not help at all. i still have significant back pain and spasms. Do you have either if those things?
ashley99970 karen05736
Posted
Hi,
I was having spasms 24/7 and also mild upper back pain. Since starting the Bentyl, I don't feel much pain at all unless I eat a high fat meal, gluten, or an acidic meal. I found a study linking Achalasia or esophogeal motility issues with eosophinils in the esophagus (EOE). So, this gave me hope that this is all related to some type of food allergy. I saw a specialist on EOE, and he said it's highly possible that people with esophagus motility disorders could improve by cutting out the top allergens- or at least wheat, soy, and dairy. I'm working on that.. it's challenging.
Hope this helps..
A
AlanJM ashley99970
Posted
Eosinophilic oesophagitis is a condition that sometimes creates inflammation in the oesophagus, but there are also some other conditions connected with oesophinils, and motility can sometimes be affected.It is of current interest to the British Society of Gastroenterology and there is information on the website of GUTS UK charity. There is also an organisation called FABED - Families Affectd By Eosinophilic Disorders who have a Facebook page.
But it is different from achalasia.
ashley99970 AlanJM
Posted
Thanks Alan- here is an interesting study if you or anyone wants to look it up. Dr. Spechler has been studying Achalasia and EOE for many years. He is probably in his late 60's/early 70's and works for Baylor in Texas.
Can Eosinophilic Esophagitis Cause Achalasia and Other Esophageal Motility Disorders?
Spechler SJ1, Konda V, Souza R.
AlanJM ashley99970
Posted
Thank you for the reference. Interesting - I will ask for advice. I hope that it might solve your problem. Achalasia is certainly not the only condition that causes motility problems - and it is definitely a specialist area!
More generally, I wonder if people with achalasia might benefit from having some form of allergy testing on the basis that this will not do any harm, and might do some good.
ashley99970
Posted
I just read that Bentyl can cause cognitive decline if used consistently for a long time, so I'm now less enthusiastic about it.
AlanJM ashley99970
Posted
It is a question of short term benefit weighed against potential long term risks (and any harm that the spasms themselves do to you).
I am not medically qualified but I think that all medication ought to be reviewed periodically anyway, and this is an area where you can consult your doctor for more information about the potential side effects.