Achalasia, your experiences and my story.
Posted , 14 users are following.
Hi, new here. I have been suffering with sickness, extreme dysphagia, weight loss and chest pains for 12 years. I am 27 years old. I have had repeated endoscopies over the years which never showed anything significant, however the one I had this week shows probable achalasia. My weight has plummeted to 7.5st. I seem to struggle with all food and liquids other than water. I have to drink several glasses of water whenever I eat to 'push' the food down. I can be sick anywhere between 5 and 20 times per meal. It has been extremely distressing for me to have faced frequent accusations of being bulimic or this being all in my head. I even wake up vomiting in the middle of the night. I feel like this condition has taken over my life.
Im interested in hearing your stories. Is there hope yet?
1 like, 36 replies
quantumq4 elfie90
Posted
Hi all. Newbie here, just found this forum
I'm 43 years ancient and have been suffering with this cr*p for about 10 years.
I've had all the tests and have been through the 'you're making it up/imagining it' phase. I'd been taking 40mg Omeprazole twice a day and that sort of kept it in check until December 2016.
At that point things went downhill again and I eventually managed to convince my GP that I should have ANOTHER camera crew down my throat to have another look.
Part of the prep for this was I had to stop taking the tablets so it didn't interfere with a biopsy.
Oh boy, was that a mistake.....
Xmas was horrible, and I spent the new year in A+E on drips as I hadn't eaten or drank anything for 7 days.
I had the camera crew in and achlasia was confirmed....FINALLY.
I needed a pressure test but my local hospital (Lister in Stevenage) couldn't do it so I was sent up to Cambridge.
That confirmed the confirmation and Lister said I needed surgery...which they couldn't do, so I was packed off to UCL in London.
At this point I've lost 2 1/2 stone and aLot of muscle mass.
By this time I couldn't work as I have a physical job and I'm now as weak as a newborn puppy. I'm also self employed which means I also now have no money coming in.....joy.
In November I'm booked in for a Timed Barium Swallow so they can then decide what type of surgery to do.
Hopefully it will show I'm completely knackered and that they get on with it quickly.
In the meantime I'm physically 'surviving' on tinned Macaroni cheese (which I USED to like.....), tinned stews, chocolate, Frazzles (for salt) and I can just about manage a couple of different meals made with turkey mince.
Mentally, I'm surviving with Beer and Ben and Jerrys cooky dough ice cream.
elfie90 quantumq4
Posted
hi quantum. Another sad story showing the true frustrations of this bloody condition! You know although I wouldn't wish this on anyone, I'm somewhat relieved that there's others out there who can understand how I'm feeling. It's really difficult trying to explain it all to people who have never experienced these type of ongoing symptoms.
This week I had the not so wonderful manometry test. My god it was horrible, I am still recovering from a horrendous cold so having a tube up the nose was disgusting, ha! The nurse stopped half way through the test as I was really struggling, but she was pretty certain the results will confirm achalasia. All I can do now is wait for the results then hope for a surgical referral to London.
Your diet sounds similar to mine, surprising how sick you can get of the same foods after a while! I'm relying on rum and m&m's mentally
good luck for November, hope you get the much needed answer!
AlanJM quantumq4
Posted
k84461 elfie90
Posted
I have had the manometry test done twice and it is bloody horrible indeed. I struggled both times and the first time the water went all over the nurses apron. I wouldn't be surprised if i have to have more in the future so will dread it when the time comes.
k84461 quantumq4
Posted
I can sympathise with you cause i had the "your making it up" bulls**t which lead to loss of weight and tiredness too. I was put on the same meds last year but they didn't work. I was diagnosed with achalasia when i was 12 and an op didn't work. I have gotten worse in the last few years and another op is not an option so they cannot help me any further.
Good luck to you with your case.
quantumq4 k84461
Posted
Who said another op isn't an option? Was it your GP or a specialist?
There has been some progress over the years with different types of surgery coming on line so there might still be hope for you....
AlanJM quantumq4
Posted
It is a good question about whose opinion this was! It does need to come from a specialist Upper GI surgeon. If your oesophagus has become big and baggy, and does not have enough shape to funnel the food into your stomach, it may be correct that a normal achalasia procedure would not be realistic. But eventually an oesophagectomy may be realistic as a way forward. This is where your oesophagus is removed, and your stomach re-shaped and joined up with the stump of your oesophagus. It is major surgery, but many people have had this done, and the best source of advice about after care after the surgery would come from the Oesophageal Patients Association. I know one lady, now in her 80s who had this operation 25 years ago. She has just done a 'body flying' stunt with her grandson. She was a bit out of breath! - but it does indicate that life can be enjoyable after this surgery.
k84461 quantumq4
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k84461 AlanJM
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I think my oesophagus has gone too small not baggy. I also think my consultant mentioned the removal op you mention but didn't recommend it or was told by a surgeon it was a no go in my case. Thanks for replies both :-)
ducky1 quantumq4
Posted
Hi live not far from you and had my tests at the royal london and then surgery at
addenbrookes. I had the hellers myotomy and fundoplication and really recommend the surgeon I had mr safranek. I had no pain what so ever after surgery and I am eating so much better. There will always be foods that are a no no for me but I really don't regret the surgery.
I hope everything goes well for you.
quantumq4
Posted
I have progress.
Just had a call from UCLH.
They have a slot for POEM on 15 November.
It's now mine
ducky1 quantumq4
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quantumq4
Posted
ducky1 quantumq4
Posted
When i had mine i drank the barium and had xrays and had to wait an hour to have another x ray and it was all still sitting there in my oesophagus. I couldn't wait to get into the toilet to be sick.
AlanJM quantumq4
Posted