Gastrostomy: Stomach Feeding Tube or 'PEG' (Adult)

Gastrostomy (stomach feeding tube) or ‘PEG’, by an adult manifesting female carrier of XLMTM

I realised there was a problem with my swallow when I started to eat rice, it kept coming back up and made me choke (this is called ‘reflux’). My care team referred me for an X- ray swallow to check that everything was okay. My weight was also going down quite rapidly which was also a red flag that something was wrong with my swallow. They thought it may be time for me to consider a Gastrostomy feeding tube, or ‘PEG’.

Definition: PEG stands for percutaneous endoscopic gastrostomy, a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach.

The Speech and Language Department at my local hospital (SALT) had a video appointment with me and my care nurse gave me a banana to eat while I was on the call. The SALT could see from this, I was having some difficulty to swallow because it was a great effort to eat it.

I was referred to my local hospital for a Barium Swallow (an x-ray, sometimes called a Videoflouroscopy). There were lots of medical people in the room when I had my swallow. I was given 3 tasteless ‘barium’ meals to swallow so that they could monitor what was happening as I swallowed ‘live’ on the X-ray. First I had water and then custard and then rice pudding to swallow. I tried all of the textures but I just wasn’t aware that I was having any problem with my swallow – just the sensation that it was hard to get the food down. One of my support workers standing behind me could see the X-ray, and she told me that she could see I was choking on them, which was a real surprise to me.

A few days later after the video – 2 days actually, I got a message that I needed to see the SALT immediately. They explained that the little flap that covers my trachea and lungs isn’t working efficiently – so whenever I eat, it will go directly into the lungs and not into the stomach. This is known as ‘silent aspiration’ because I cannot feel that anything is happening and don’t choke or feel that it is in the wrong place. I asked if there was anything to fix it and they gave me some exercises for my carers to try with me, but they made no difference. This is because it was a problem with the flap not working, not necessarily my muscle strength in my mouth.

At first they recommended a PEG but my mind wasn’t in the right place to accept it. But I did agree to a pureed meal which they said would be safer for me. I tried this, but just couldn’t tolerate it because the taste was so disgusting to me. So I had 2 or 3 weeks without eating anything. I was so tired that I could hardly get out of bed. It was at that moment I said that I knew I should consider having the PEG.

I had a conversation with my mum, and was crying because I was so upset – but realised that I would have chest infections constantly without a PEG and that was something I really wanted to avoid.

For the procedure itself – I went to a more specialist hospital who knows my condition. But even they came to realise that my organs are not in the right place – so they couldn’t do a normal straightforward PEG procedure because they were worried it would puncture

my organs: my heart, lung or liver. So they sent me home, making another appointment for about a month later to have it done under X-ray. I also wasn’t able to have a general anaesthetic for the procedure, due to my respiratory issues and the risk of complications with extubation post surgery, so to avoid this I decided instead to have a light sedative where I would be awake and it wouldn’t affect my breathing. Apparently it is quite normal for some people to have their PEG done under a sedative. The anaesthetist said I wouldn’t feel anything, and would only be able to respond if someone spoke to me – but actually I wasn’t too aware of what was going on.

Because of how my stomach was being crushed by my lung they could only see a small opening to get the PEG into my stomach. At the time, I remember they were hesitant because it was a such a small entrance to navigate. So in order to direct the PEG into the exact right place, I had to swallow a tube (called an endoscope) down my throat into which they could look in my stomach and could guide an X-ray wire. This too was problematic for me because of my weak swallow. So they quickly swapped to putting a nasal tube (or endoscope) down to guide them into my stomach which worked fine. They managed to get the PEG into the best location. Because of how my stomach sits, they needed to keep the PEG in place with a retention disc stitched inside my stomach – this was because they were worried that it would come out and then be difficult to get back it in again. The whole thing took about 2 hours, but should have only been 30 minutes. To me, it felt okay and fast, like it was only 30 minutes.

Since having the PEG I have had the retention stitches removed (which were supposed to naturally drop off) and experienced some pain post surgery, but that was helped by taking Oramorph pain medicine for a short while. I have stopped that now. I have also suffered from some granulation on the skin – nothing major. They are putting Kendall foam dressings onto it now [see link] which is helping with the healing process.

I have had a dietician involved to help with my diet – for the first three weeks I was gaining a lot of weight, but they have given me another type of food now which is much better and keeping things stable. My body has been quite accepting of the formula food and I do have my energy back again.

I knew it would have to happen at some point, and there would be a time when I would need to consider other options for taking in my food, rather than eating orally. They did say I can eat snacks like Skips and Quavers because those melt in your mouth – but not to allow anything else. It has felt really difficult to adjust to not eating food by mouth – I do have cravings and find it really difficult to sit in a room when other people are enjoying food. I am receiving therapy to help me and have a

PEG Nurse and Dietician also to help me through this difficult time. I do hope that there will be a time when I am feeling more accepting – I am trying to think positively.

While it is not ideal because I prefer to eat normally – the positive side that I can see is that don’t have to take meds by mouth and have stopped worrying about choking anymore. I have also helped to prevent any silent aspiration which also helps with my anxiety. I can see now that my poor swallow was the reason I was having so many chest infections in the past, and I am now already doing so much better and above anything, staying well.