Failed POEM??? - UPDATE
Posted , 3 users are following.
for background please see previous discussion on Failed POEM, hopefully this information will help some others understand what may be going on if they have the symptoms of a failed POEM.
Once you have Achalasia according to my doctors you lose the ability in the esophagus to feel whether you have acid reflux or not although you may have pain in your stomach from over production of acid. When they did my original POEM on April 15th of this year (2016) there were no signs of esophageal acid erosion or esophagitis. This past Friday due to having all the symptoms of failed POEM and the Barium swallow test results that showed the same results as the one I had before the surgery they performed an EGD and it showed that:
1. I now have a hiatal hernia
2. I now have a large ulcer in my esophagus
The surgeon is saying that this is causing my sensation of not being able to swallow and my regurgitation. He is also saying that this may necessitate them going back in to do a fundoplication which makes sense to me and which I would prefer that they do. In the mean time they have prescribed the following
1. Carafate – one tablet crushed in water 4 times a day for 90 days
2. Pantoprazole 40 mg twice per day before meals for 90 days
3. Ranitidine 150 mg once per day before bed
Additional Instructions - Eat six small meals per day for the rest of my life.
They are saying they will see me in 30 days so see if there is improvement. I have the suspicion that if I actually improve they will use this as an excuse to avoid doing fundoplication and to keep me on PPI’s for years which I am not okay with.
Comments please?
0 likes, 4 replies
ducky1 abigail66654
Posted
Sorry to hear you are going through all of this.
I have to say your Doctor is so wrong about people with
achalasia can't feel if they have acid reflux because I certainly
can.
Infact I have the opposite of what he has said and that is that I
Can't feel it in my stomach but can feel the pain all the way
up my oesophagus and if it is really bad it hurts to swallow
anything including liquids.
Other things is I had a hellers myotomy and fundoplication
in 2012 and still have to take ppi's for the rest of my life.
abigail66654 ducky1
Posted
I personally feel the acid in my stomach and it hurts. I have a feeling of pressure in my esophagus but almost no burning until it hits the back of my throat then I feel it.. Frankly considering the long term side effects of PPI's I will not take them for the rest of my life. If that is the only answer then I am done and let the chips fall where they may. Thanks for responding I hope you have some improvement.
AlanJM abigail66654
Posted
It is important to allow the ulcer to heal, and the likely way that this will be achieved is the pantoprozole / ranitidine to reduce the amount of acid produced by your stomach whch probably irritates your oesophagus and may have caused the ulcer. This may take a couple of months to achieve, but this method is better than the old-fashioned method of using surgery to cut out the ulcer. It is not surprising that the ulver causes you the problems.
If there is no improvement after 30 days, they might increase the dosage and review after another period, which again is logical.
Eating small meals little and often is probably sound advice to make sure that your achalasia does not recur, as there may always be a tendency for stress / tension or blockage to affect your swallowing or give you a spasm.
A fundoplication would counter the acid effect because it recreates a valve at the lower oesophageal sphincter. It might affect your ability to vomit. Long term exposure to reflux is not healthy because of the risks of Barrett's oesophagus and subsequent dysplasia that carries a cancer risk, but the risk of somebody with newly developed Barrett's Oesophagus aged 30 years may be between 11 and 25% by the time they reach 80 years of age, so provided that you have not got Barrett's oesophagus at the moment (it is readily diagnosed with an endoscopy) there is plenty of time to get this reflux issue right first as the priority. Hiatus hernias can be repaired, and if you have further surgery, it would make sense for them to consider doing this at the same time.
PPIs do not have a good press at the moment but they are safe medication generally, and you should not overestimate the risks.
You are probably in the best position to judge whether you have faith in the senior members of your surgical team to make sure that you get put right. A second opinion is sometimes valuable, and they should share with you their assessmnent of why the POEM failed. Perhaps they cut too much muscle, perhaps?
abigail66654 AlanJM
Posted
Thanks Much OPA_AlanM
Its helps to have someone else go through this logically since the experiences of the last several months have been very depressing. Even though i think the basic plan of my current doctors is sound i am still going to have my records reviewed by another surgeon for a second opinion. I am somewhat upset by the fact that i tried to tell them two and half months ago i though there was a problem and they basically ignored me. I told them at that time that i had a burning sensation in my stomach and in my throat on occasion. I suppose the problem was that most patients dont have an allergic reaction like i did that we could not narrow down. It could have either been to omprozole, rantidine, carafate or a delayed serum like reaction to doxycycline and it happend two weeks after surgery, i had to go off all the medications for a fuill week. I tried going back on omeprozole and it made me itch so we stuck with rantiodine alone and obviously that was not enough.
So far i am tolerating the Pantoprazole and the other drugs they just put me on. I am hpoing for the best. Its all i have left. I have to admit i am tired and frustrated and finding it very hard to work. I ordered a meal replacment shake that has the full daily recomended amount of vitamins and minerals and is low calorie that i can have three times a day and am hoping that will help. Remeber i am the "fat" patient LOL so i need to lose weight unlike other Achalasia patients.
Again thank you for you advice and support it helps.
Best
Abigail