Dysphagia

Pebbz1981

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 mentioned it to my oncologist she said it could be a mixture of chemo, body being so weak, radiation to breasts and just the cancer itself. So she didnt do anything about it. Just before christmas we called ambulance to the house cause i was javing trouble breathing, long story short, ended up in hospital for unrelated issue, but refused to leave till i got answers about the throat issue. Did tests turns out i have Dysphagia......... does anyone else have this? I have been on puree diet since christmas and it is HARD.  My husband and i are doing our best to make recipes up then hope once its pureed they taste good. I have ent specialist next week and i hipe hes able to give me some good news.
Any help or recipes maybe you ate when you had trouble swallowing would be greatly appreciated. I can give my email address if it makes it easier or msg me privately.
Thanks so much in advance.

Zoffiel

Oh that sucks @Pebbz1981
The only cook books I've seen for  Dysphagia have been written for people who have had a stroke. My Mum struggled with it for a few years ( if you want to see an 86 y/o completely lose it, mention thickened fluids to her ) Thankfully she has recovered to a point and decided to take her chances with the rest. Try your local library. Mxx

kitkatb

Hi @Pebbz1981  Sorry to hear about the Dysphagia, I am a BC survivor but I also cook for an aged care so know exactly how you must feel and what you are going through.  You will find with thickened fluids you have the 3 thickness  150 mild   400 moderate and then the 900 which is extreme.  If you are having thickened fluids NEVER have ice cream or jelly as the warmth of you mouth melts it to pure liquid form and you can choke.  ( you can get thickened Icecream )
If you ever want to know anything about meals just PM if you would like.   But you really can puree most things.  I introduced pureed salads into the aged care I work with as they had only been getting hot meals up until then.  For example asparagus and cream cheese,   beetroot with red onion and mustard,  you can puree eggs,  de seed tomatoes and puree,  advocado,  Cold meats such as ham and chicken with mayo or puree some relish.  fresh fruits such as rockmelon, pineapple puree well.   What you will need is a container of "Resource"  which is used to thicken foods as well as fluids.  Somethings your puree won't actually need the thickener added.  You can also puree cakes with custard or cream. Puree crumbles.   Stews, casseroles, curries you name it.  just get a selection of different size ice cream scoops so it looks nicer when you serve as we all eat with our eyes.   I hope everything works out for you and don't have to stay with the puree for too long. ( and yes you can even thicken wine or beer )  All the best  xox

arpie

Some wonderful info there, @kitkatb and SO much more interesting & tasty than what I was able to give patients 40 years ago!  That is just awesome!  

I'll tag @Nadi  into this conversation as well, as she also has a swallowing problem.

kitkatb

Thanks @arpie  yes you should have seen the looks on the residents faces trying salad for the first time for some of them it had been years.   I always try to think of the puree residents as much as possible as unfortunately in some places they are the forgotten ones and given a constant diet of mashed potatoes. mashed pumpkin and meat.   I even worked out how to puree pavlova took quite a few disasters but got it in the end. ( and taste tested haha ) The look on their faces was priceless and makes the effort worthwhile . xox

arpie

Back in the day, @kitkatb   I used to put Roast Lamb & veg (and other meals) into a big blender with a heap of gravy & mint sauce, curries, etc .... and they loved it.  I also did lots of smoothies with tinned fruit & ripe fresh fruit - with custard, cream, ice cream, eggs & vanilla ... anything I could 'value add' to with flavour or calories.

My husband lost 3/4 of his stomach to cancer, so I got even more practise at it, 9 years ago!

Nadi

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

Pebbz1981

Hey all.  Just a quick update. I had the botox injection about 6 weeks ago. So much better. Not on solids but i am eating much more softer foods like pasta, toast, potatoes,pasta and so on so on. I have put on 2 kgs so far. Its a vey slow process.
If anyone needs or is considering botox for throat muscle for dysphagia or similar i recommend. I will see ENT again in 4 mnths to see whats happening and if its worse, same or better. If it gets worse till then we do botox again if it stays same then we leave it till it starts to play up. The other problem i have now is my sinuses. Post nasal drip is an issue but i will write about that another time. Hope everyone is well.

poodlejules

@Pebbz1981 just reading your thread here.........so many shitty side effects of treatment. So glad the botox worked and you are back on solids. Thinking of you and sending good healthy vibes your way! All the best! 

jan61

Flamin heck..... I have just self diagnosed dysphagia. I have a video conference with the oncologist next week but I doubt I will mention it. I’m more than a bit sick of things going wrong

I feel like there is a lump in my throat/chest. It’s difficult to swallow. I’m short of breath and living on somac and maxalon. The heartburn is horrendous. I did google and am treating it as suggested on the BC website.

im so sorry you are going through this @Pebbz1981

arpie

Gosh, @jan61 - it might be wise to mention it with your Onc next week ...... I am sure they'd want to know.  Apart from anything else, it would be really annoying     Are you dropping weight?

Take care xx

jan61

Thanks @arpie I will see how it goes. I have already been called the difficult child..... the one that’s has problems. The oncologist is a lovely young woman but the issues communicating with her ( and not of her making ) are stressing me. I am sure the hospital will send me another feedback form and I will fill that in.

Pebbz1981

@jan61 please mention it to your 9ncologist if you get a chance. Hope your appt goes well.