Dysphagia
Hello all. So over christmas and new years i was in hospital again. I have been having some swallowing issues for about 6 months now and its seem to have got worse as the weeks go bye, when i menti...
Forum Discussion
Hi @Pebbz1981 So sorry to hear about your problems. I TOTALLY understand what you are experiencing. In September I was diagnosed with Achalasia with zero oesophageal peristalsis. It took a trip to hospital in the ambulance before they finally did all the tests needed to get a diagnosis. The main symptom of my disease is not being able to swallow food and liquids or even saliva - ie dysphagia.
There are many causes of dysphagia. But I can only talk about what caused mine. In my case, my Achalasia causes my lower oesophageal sphincter (LES) to close tight under very high pressure and it does not allow the food or liquid I have swallowed to get into my stomach. Whatever I've swallowed gets backed up and I get a constant feeling of having 'food stuck' in my throat or the food or liquid that I have just tried to swallow just comes back up again. This disease has caused my oesophagus to stretch (like an old sock) which also at times causes a lot of pain.
Looking back I have had swallowing problems since before breast cancer - at least 3 years ago. I had endoscopies during chemo because I had abdo/chest pain, shortness of breath and swallowing problems, but at that time the tests didn't show anything and I was told my symptoms could be a side effect of chemo and radiation or it was silent reflux (even though I NEVER had the burning reflux sensation) etc etc.
Then last year my symptoms got much worse very quickly - I couldn't swallow food or liquids, my weight was plummeting, I had no energy, was dehydrated and in a lot of pain - hence the ambulance ride to hospital. Then another endoscopy found my oesophagus was overly stretched and they couldn't pass a scope into my stomach because the LES was too tight. They did a barium swallow test which confirmed the LES wasn't opening. Then they did a manometry test to see if I had the ability to swallow - I didn't- the nerves in my throat had died.
Finally I had to have major surgery called a Heller Myotomy with fundoplication. I lost 30 per cent of my stomach as they had to 'redesign' my plumbing to hopefully allow the food to enter my stomach more easily. The good news is Achalasia is very rare 1, in 100,000 so you probably don't have that and hopefully the cause of your dysphagia will be something they can easily fix.
I have been on mostly liquids and some pureed foods since 5 August 2018 (my 50th birthday when I went to hospital in the ambo) and yes it is so HARD!!!!! I had surgery on 30 Nov and am still on liquids. There's a good chance I will have another surgery in a few weeks time as unfortunately I am still having problems and soft foods like runny scrambled eggs are still getting stuck and liquid doesn't push it down.
So an all liquid diet is currently still best for me. @arpie has given me some great tips. I live on protein shakes (Healthy Mummy ones are ok), resource, fortijuice, sustagen, soups, soups, soups and more soups (with absolutely no lumps). Before things got really bad I used to have lamb stew with vegetables cooked in a slow cooker then pureed but that's a bit thick for me at the moment. When I feel brave enough to try soft pureed foods I have extremely runny weetbix with cooked mashed bananas, cream and milk; or cooked pureed sweet potato mash with lots of sour cream. Once my weight started to drop really quickly when I could barely get liquids down I began to add thickened cream to everything just for the calories. I avoided surgary things like ice cream or jelly because they cause inflammation. I take a good liquid multi vitamin supplement that helps with energy. My advice is just to experiment and try different things.
I also understand the psychological toll dysphagia can take on people. I can't help but obsess about food. I can't eat with my family - it just stresses me out too much watching them eat whatever they like when I am so restricted - my thoughts are preoccupied with what foods I may be able to tolerate and not get stuck in my throat. Oh boy do I miss steak.
Also there are a lot of dysphagia support groups on facebook which can also be a great help. If you go through tests which don't show anything and you still have symptoms, keep pushing for more tests or different specialists. It took 3 years for me to get diagnosed and things aren't better for me just yet, but I hope they'll get a bit better soon with another surgery. It can get you down at times so if you need to vent I'd be happy to be there for you.
Wishing you all the best. PM me if you have specific questions that I may be able to help with and good luck.
Nadine
There are many causes of dysphagia. But I can only talk about what caused mine. In my case, my Achalasia causes my lower oesophageal sphincter (LES) to close tight under very high pressure and it does not allow the food or liquid I have swallowed to get into my stomach. Whatever I've swallowed gets backed up and I get a constant feeling of having 'food stuck' in my throat or the food or liquid that I have just tried to swallow just comes back up again. This disease has caused my oesophagus to stretch (like an old sock) which also at times causes a lot of pain.
Looking back I have had swallowing problems since before breast cancer - at least 3 years ago. I had endoscopies during chemo because I had abdo/chest pain, shortness of breath and swallowing problems, but at that time the tests didn't show anything and I was told my symptoms could be a side effect of chemo and radiation or it was silent reflux (even though I NEVER had the burning reflux sensation) etc etc.
Then last year my symptoms got much worse very quickly - I couldn't swallow food or liquids, my weight was plummeting, I had no energy, was dehydrated and in a lot of pain - hence the ambulance ride to hospital. Then another endoscopy found my oesophagus was overly stretched and they couldn't pass a scope into my stomach because the LES was too tight. They did a barium swallow test which confirmed the LES wasn't opening. Then they did a manometry test to see if I had the ability to swallow - I didn't- the nerves in my throat had died.
Finally I had to have major surgery called a Heller Myotomy with fundoplication. I lost 30 per cent of my stomach as they had to 'redesign' my plumbing to hopefully allow the food to enter my stomach more easily. The good news is Achalasia is very rare 1, in 100,000 so you probably don't have that and hopefully the cause of your dysphagia will be something they can easily fix.
I have been on mostly liquids and some pureed foods since 5 August 2018 (my 50th birthday when I went to hospital in the ambo) and yes it is so HARD!!!!! I had surgery on 30 Nov and am still on liquids. There's a good chance I will have another surgery in a few weeks time as unfortunately I am still having problems and soft foods like runny scrambled eggs are still getting stuck and liquid doesn't push it down.
So an all liquid diet is currently still best for me. @arpie has given me some great tips. I live on protein shakes (Healthy Mummy ones are ok), resource, fortijuice, sustagen, soups, soups, soups and more soups (with absolutely no lumps). Before things got really bad I used to have lamb stew with vegetables cooked in a slow cooker then pureed but that's a bit thick for me at the moment. When I feel brave enough to try soft pureed foods I have extremely runny weetbix with cooked mashed bananas, cream and milk; or cooked pureed sweet potato mash with lots of sour cream. Once my weight started to drop really quickly when I could barely get liquids down I began to add thickened cream to everything just for the calories. I avoided surgary things like ice cream or jelly because they cause inflammation. I take a good liquid multi vitamin supplement that helps with energy. My advice is just to experiment and try different things.
I also understand the psychological toll dysphagia can take on people. I can't help but obsess about food. I can't eat with my family - it just stresses me out too much watching them eat whatever they like when I am so restricted - my thoughts are preoccupied with what foods I may be able to tolerate and not get stuck in my throat. Oh boy do I miss steak.
Also there are a lot of dysphagia support groups on facebook which can also be a great help. If you go through tests which don't show anything and you still have symptoms, keep pushing for more tests or different specialists. It took 3 years for me to get diagnosed and things aren't better for me just yet, but I hope they'll get a bit better soon with another surgery. It can get you down at times so if you need to vent I'd be happy to be there for you.
Wishing you all the best. PM me if you have specific questions that I may be able to help with and good luck.
Nadine