POEM available in Toronto

I am choosing to not do the surgery either, just trying to manage with Homeopathic things and as you say, eating standing up when at home, I also found that ginger ale helps and apple cider vinegar. I still have acid reflux and don't like to take any prescription meds. Sucks when sleeping too. I am ordering the new MEDCLINE pillow, have you heard of it? I will let you know how that works. My doctor told me that i have a narrow eosophagus and I still get " stretched " every now and then. It is done under sedation so It's not a big deal. Just wondering what kinds of foods you eat....... I hate this stupid acid reflux, it's soooooooooooooooooooooo annoying. 

Thanks......................

Are you sure it is acid reflux from your stomach, and not stale food that has been hanging around in your oesophagus?   Either way, sleeping more upright may well help.   Some people prop the head of the bed higher using bricks etc.  You can sleep on a duvet to stop yourself slipping down.   Some people do get adjustable beds that go into a W profile for the knees.

Some people do indeed manage the disease by having occasional stretches, but do be careful because of it is stretched too many times, it can become fibrous and reduce the chances of a successful conventional operation later.   I am not sure whether POEM is affected this way or not.

It would be not unnatural to get more acid reflux after a stretch.   Gaviscon Advance can be helpful, and there are other medications as well like Esomeprazole if it is coming up from the stomach.

With a Heller's myotomy, surgeons normally create a fundoplication to recreate a valve effect against the reflux, but this does not get done with POEM.

Lots of homemade soups but avoid tomato based.  Favourite is chicken but am going to try Italian Wedding soup.  Scrambled eggs.  And lots of fluids, peppermint tea, flat ginger ale, milk, meal supplements (on gastro’s advice). Take Pantaloc and domperidome.  Also find meat pies good, the frozen kind you can find in grocery store.  Apparently something called Steakhouse Syndrome- beef, chicken and pork getting stuck - I believe it.  Fish good I find.  No raw greens, ie salads.  I find if I am overtired problems will arise.  Example..three day trip to Ottawa and ended up in ER 2 days later needing to have a food bolus removed.  Let me know how MEDCLINE works.  I am sure my two small terriers would be fascinated😂.  Hang in there as you just learn to live with the achalasia and I find your body just lets you know what not to eat and when.  My friends always fascinated by what I order when eating out..a salad without the greens and crepe brûlée crazy choice.

Thanks for sharing your food list with me! See now I have trouble eating the scrambled eggs but poached and hard boiled I am fine with. I am staying away from the salads too because I feel I can't chew it up small enough. what did they have to do to remove the food bolus ? I will keep you posted on how the MEDCLINE works when I get it too!

Thanks again............ Oh one more thing: what do you put in your soups? 

I am not sure if the acid is coming from my eosphagus or stomach. 

My one doctor told me that it does not hurt or damage anything getting it stretchhed and advised me to keep doing it when I need it as mine is narrow. He said most who have Achalasia have widened ones and muscles don't work. Not what I have where it is narrow.

Sorry for delay.  For soup - chicken, chopped celery, carrots, onions, garlic, rice, noodles, orzo.  Am going to try a ground beef tomato based soup and Italian Wedding Soup.  Also garlic roasted mashed potato and cream of mushroom.  Last two are cream based and guaranteed to put on weight.  Like to put crumbled bacon, parmesan and croutons on the potato soup.

Link below is to site re removing food bolus.  Procedure is done in endoscopy lab.  It is not surgery.  Bit uncomfortable but use sedation.  If you ever need done this on an urgent basis, go to Emerg at a hospital that has endo lab and recommend you go early in morning (6-7 am) pm a weekday.  The lab can often schedule you in.  One time I arrived at Emerg at 7ish and was home by 1:30.  Part of the reason for this may be that I have been there before, so have a history, and am a volunteer, although we never expect special treatment!!

Take care.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2661297/

I had my eosphagus stretched and scoped again on Dec 28th just past and he found food stuck in there again! Not alot but some. I am assuming he dilated it again.

Not really sure if it is helping and I am so paranoid on what to eat.

Now that cannibis is legal, a friend of mine who has brain cancer let me try some cannibis oil I believe it is and it helps with my swallowing. I take it before I eat breakfast and I find it helps. It's just a real little amount. I wonder if any one else in this group has tried it?

There are some who have tried cannabis, medical or otherwise, and have personally found it helpful, but it is difficult to say whether this would apply to anybody else. You have to be careful because the strength and consistency can vary so much. Whether this seems to work for some by relaxing the muscles / dealing with spasms there I do not know. Others try Viagra / Cialis on the basis that it helps to improve blood flow to various parts of the body.

As with anything of this sort the side effects, sometimes long term, need to be taken into account, and that is partly why one goes to a qualified doctor.

When the endoscopist found food residue in your oesophagus, it is an indication that food is not passing through into your stomach as it should. A dilatation can be helpful and indeed some people are treated for achalasia successfully with dilatations every so often, but it is best not to repeat them too many times because the tissue can become fibrous and thereby more difficult for future surgery. So if dilatation does not work on the basis that the benefits do not last very long, it would be prudent to seek further advice to have something more definitive and long term sorted out.

There is a Facebook group called Canadian Achalasia Support Group.  It is a private group.  There a quite a few members from Ontario in that group.  They may be able to help you.

Hey Paula, thank you for reaching out. I was as worried as you are about the manometry. It is not the most pleasant of experiences and I'd be a happy woman if I never repeat it .. but will most probably have to

My symptoms were so obvious prior to my surgery and the cardio spasms so severe, that I was able convince my doctor to schedule the surgery for me as soon as possible without waiting for another medical test. Please bear in mind, there might be something about my case that allowed my doctor to make that decision for me. So, I did not have to go through it prior to the surgery. But 6 months after the surgery, when I went in for my evaluation appointment, the doctor strongly recommended the 24 hour manometry. He mentioned that because we did not have 'pre' data, we'll just use it to compare the 'post' situation i.e. if year over year things improve/change/deteriorate.

It was a horried experience made all the worse as I had a broken foot at the moment and was hobbling around on crutches. I was a truly sorry sight. You won't believe the number of personal injury lawyers who spoke with me in the hospital lobby :D All being said, it's just a 24 hr test. You feel funny trying to speak, eat, drink.. breathe..but you get over it within first 2-3 hours. If you work, I'd recommend taking a day off and spending it at home.. resting. Try not to talk too much. Distract yourself with TV/a good book. You feel nothing when you are asleep.. so take plenty of naps. You will be glad you did it as it'll give the doctors a benchmark to assess success of your surgery against.

Good luck,

Shruti