After 2 years with the NG feeding tube and problems starting to flare in my nostrils I agreed to changing to a PEG feeding tube. This is where the tube goes straight into your stomach and the longer outsider side is under your clothes.
There are a few different kinds, mine has a bumper inside rather than a balloon and it is a dangling tube rather than a button.
The procedure to have it inserted was very quick with a 1 night stay in hospital as we already had all the equipment at home, was settled on the feed and knew how to use it.
The consultant did it in the endoscopy department with 3 other team members. I opted to have no sedation but believe you would usually have this. They then gave me the numbing mouth spray that tastes like bananas before putting in a mouth guard to open it up and begin.
Here is where it went quickly and I may not get the full details even though they kept me informed. They passed the camera down into my stomach, used a light to show where to cut on the outside on my stomach. Passed a clamp down to get a thread and pull this back up through the hole out my month and attach it to the tube and then pull and feed it back down into place before fixing it in with the external fitting, attaching the clamp and y-adaptor on the end where the feed and things go in.
That was me done, off to the ward for a very windy night that did cause stomach pains but I was allowed home the following evening to recuperate.
I have to care for it my keeping it clean, turning it like an earring, but it has been very good to me and allows me to have hydration, nutrition and medication when I can not swallow.
NG Placement
Having an NG tube placed by the nutrition nurse has always been fine for me, she explains as she is doing it you look straight forwards as she pops the tube up your nostril it easily goes over the bend at the back and she pushes it gently until it goes down into your throat and enters your stomach.
Unfortunately this is not the practice that happens in hospital in my experience, as of course staff in various departments don't have the experience the nutrition nurse does and any many don't even like to do it as they know it can be traumatic when they do it.
I have seen medics asking others to do as they didn't want do, some refusing to completely, some saying they haven't done it in over 10 years so having to get familiar with the procedure and others who simply give it a try and keep trying until it is in.
All this can lead to various methods of tilting the head, meaning the passage is not inline, being asked to swallow water then you can't swallow, the tube coiling in your mouth but they are not use to the feeling and continue pushing, and the worst one for me is the hammering of the tube at the back of the nostril trying to bend the tube over, this is so painful, it causes the eyes to water and can lead to a nerve pain for days once the tube is in.
Placing the tube looks easy but has to be skill and I don't envy the medics doing this job, especially when it's not something you do all the time to perfect.
Some staff members will have experienced this in training so my tip if you ever need this done apart from asking for an experienced member of staff, relax as much as possible to help the tube go down, if you need them to stop tell them before hand you will raise your hand to show them this. If it is sore after any initial discomfort, sometimes moving the tube to a more comfortable place on your check and behind your ear can easy it.
With FND you can often be surprised by a new symptom as it can be an issue with any function caused by the brain so when my swallow stopped working I was not shocked and we carried on for a day or two as things can come back as quickly as they start. Not recommended for new symptoms, best to mention to a medical professional.
On the 3rd day I contacted the GP as I had had no medication, fluids or food. We was asked to go to A&E where I failed a swallow test of course was found to be dehydrated then like FND does after a day my swallow came back.
I was only home 2 days before it went again so off to hospital same routine and this time I was fitted with a NG tube which goes from your nose in to your stomach to put liquid food, medication and water down.
This was only in a few days before my swallow returned and out it came and home I went.
This was repeated a few times until I was kept in hospital for weeks upon end with the NG tube in place and eventually after several meetings and tests I was allowed home with it in, but it was not an easy ride as 1 doctor did not understand the condition and therefore didn't believe I could not swallow, I had to have a psychological assessment before he would agree to treatment and in my area they did not know the process for adults in the community with NG tubes.
My neurologist has diagnosed me with FND after years of symptoms. He has scanned every part of my back and head, run other test to rule out different conditions which was good but then once he explained it just gave me a website www.neurosymptoms.org and has sent me on my way.
This leaves me unable to walk, sometimes mute, forgetful of easy things like the order of the months, a film we have just watch or food we have just eaten, having NEAD seizures related to FND, passing out and all I have is a website, which is good but not treatment.