PEG – Feeding help.
PEG-feeding help & free resources for dysphagia
During & following treatment I was confused about what was happening to me, as a consequence & like many others, I researched “PEG-Feeding Help.” I didn’t find much. What do I eat, what does that mean, how do I do that? As a result, I compiled a list of free resources to help you.
In doing this, the resources offered here are relevant, organised, convenient & up to date.
* I am also an “affiliate” with Slo Drinks the products listed below – If you purchase I do earn a commission.
Useful Links & Resources
Here are some links that I have found useful.
“What are some of the challenges & things to prepare for with Radiation & Chemotherapy?“
Knowing in advance what your likely side effects are going to be is a double edged sword. The result is you may worry about things out of your control, or you may mentally & physically prepare yourself for the fight of your life. Therefore I am not going to sugar coat it, It’s exhausting!
Above all, I think it’s helpful to have at a minimum a helicopter view of what the side effects are likely to be and how to manage them.
I had surgery, chemotherapy and radiotherapy. I also had a PEG tube feeder for 15 months. In other words, I went through the wringer too, and here’s what I learnt.
You’ll be so tired you just want someone (anyone) to tell you what you should do. In addition, a simple to follow list of resources to read and provide some sanity. After we discuss Your Pathway, I delve into the world of dysphagia & radiotherapy side effects. I outline stages here Lesson 1 of my program. if you would like further detail. (this is a pay section not a free resource)
The syndrome you might have is Dysphagia not Dysphasia, which is quite a different issue. The difficulty is “swallowing” and I talk about what that might look like for you & how you can start to tackle the journey. In order to help you understand, I would ask your speech pathologist to show you a cut away model of what was likely to be happening in your oesophagus and throat.
Here’s the Woeful 8
- Mucositis (Inflammation & Ulceration)
- Odynophagia (Painful swallowing)
- Dysgeusia (Distortion of taste)
- Thick Mucus (Mucous is the adjective)
- Dry Mouth (Saliva glands are effected)
- Pain (Generally lucky us!)
A short clip on my Speech pathologist explaining my situation
I talk about side effects how they can and do impact your swallow. What sort of foods to eat and to ensure you have adequate nutrition & are able to maintain weight. You can see some of my recipes on this resource tab or take a look at my book.
I was very vigilant with mouth care, swallow exercises I also researched and practiced how to manipulate food. There are some good resources to read up on and follow. I include home assessment programs you can do so that you have some control over what’s happening with your own body and, as a carer you get a better understanding of what types of food HNC patients are likely to be able to eat.
Finding out where you are on your dysphagia pathway is very helpful in determining what levels of food thickness you are likely able to handle and how you can progress from there.
In conclusion, it’s quite a challenging journey and continues to be so some years down the track. Having some tools and guidance is a positive step forward in creating the best new life for you.