From Scared to Grateful: The Truth About My PEG Procedure

When I heard that I might need a PEG procedure, it felt overwhelming. I remember the moment clearly about a year or so into living with MND when I met with my neurologist and respiratory consultant. I had many questions, worries, and unknowns about what having a PEG meant. Looking back now, I realise that understanding the process helped ease a lot of my anxiety. If you or someone you care about is facing a PEG procedure, I hope my experience can provide reassurance and insight. Please bear in mind that this is my experience under the care of the Lane Fox Respiratory Unit, St Thomas’ Hospital. The procedure and protocol may vary.

What Is a PEG?

A PEG, short for ‘Percutaneous Endoscopic Gastrostomy’, is a medical procedure used to place a feeding tube directly into the stomach through the abdominal wall. It’s typically recommended when someone has difficulty swallowing or cannot eat enough by mouth to maintain proper nutrition.

Conditions that may lead to a PEG include neurological disorders such as Motor Neurone Disease, certain cancers, severe swallowing difficulties (dysphagia), or recovery from major surgery.

Before the Procedure

Before my PEG procedure, I had several consultations with my medical team. They explained why the feeding tube would help me maintain my nutrition and strength. I was also given instructions about the entire process from admission to discharge. The plan was;

Day 1: Admit at 1pm

Day 2: X-ray, blood tests including overnight sleep study to ensure optimisation prior to procedure

Day 3: PEG procedure

Day 4: PEG training

Day 5: Discharge home

Emotionally, this was the hardest part. I naturally worried about what life would look like afterward. Would it hurt? Would I still be able to eat normally? How visible would the tube be? What helped most was finding others who already had a PEG. Hearing their real-life experiences made the whole thing feel much less frightening.

Days 1 and 2 were full of tests and I was pleased to hear the team were happy for the procedure to go ahead the following day.

The Day of the Procedure

I was nil by mouth from midnight but given fluids intravenously to keep me hydrated. The team at Lane Fox had already explained to me that the procedure is scheduled every week at the bedside, so there was no need to go to theatre. The team were well experienced and confirmed that I would be the first of three procedures planned that day.

Around 2:30pm the team arrived en mass at my bedside. This consisted of gastroenterology professionals, an anaesthetist, surgeon and student doctors observing the procedure. There were ten people gathered around me and despite being informed of this, I became extremely overwhelmed and cried for a few minutes, it was a lot to process.

The team introduced themselves along with two portable 30” televisions and numerous pieces of equipment. The anaesthetist guided me through what would happen and that a non-invasive nasal mask would be used to support my respiratory needs, with a small mix of oxygen and air. They also said as blood pressure sometimes drops with anaesthesia, they may need to administer medication during the procedure.

I was given a small shave of my chest and then a mouth guard strapped around my face, being asked to bite down on the guard which would stop me biting the camera cable. This was the unpleasant part but I was happy to know I wouldn’t know anything about the procedure. I don’t remember anything after biting the guard other than waking up once the procedure was complete, with only my dedicated nurse next to me who was constantly observing me.

The procedure itself was surprisingly quick. It’s usually done using an endoscope, a thin, flexible tube with a camera that doctors pass through the mouth into the stomach. This allows them to guide the feeding tube into the correct position. A bright light is shone within the stomach which can be seen externally, allowing the team to administer a local anaesthetic which allowed the PEG tube to be fitted into my stomach.

The procedure took about 30 minutes. When I woke up, I noticed soreness around my stomach where the tube had been placed. It felt like I had been punched in the stomach and I was given pain relief to manage this.

Recovery

I remained nil by mouth for six hours post procedure, but was allowed moist swabs around my mouth to alleviate a dry mouth. After six hours a small amount of water was slowly pumped through the PEG, the pump rate was increased for a further six hours. Following this the same process was followed but with artificial nutrition. No issues occurred at this time so a small flush of water was syringed into the PEG, followed by an Ensure nutrition drink followed by further water to clear the tube. It felt odd as I could feel the coldness of the liquid entering my stomach, it took a few days for this feeling to become familiar. My blood sugars were checked often to monitor how levels fluctuated.

The first few days were about healing and learning.

Nurses showed me and James how to:

* Clean the tube site

* Rotate the tube to prevent sticking

* Flush the tube with water

* Use it for feeding or medication

My discharge was scheduled for day five, however upon waking up I knew I didn’t feel right. I became very hot, dizzy and nauseas along with signs of dehydration. My discharge was cancelled as blood tests were arranged, intravenous fluids given along with monitoring of my symptoms. The next few days revealed an increase of inflammation / infection markers in my blood. These decreased after a few days, a sign that my body was reacting to the new addition just in the same way if a new piercing was made.

The site of the PEG remained tender but discomfort gradually faded over the first week.

Adjusting to Life with a PEG

One of the biggest surprises was how normal life could still be.

Many people with PEG tubes choose to still eat and drink by mouth (if safe to do so). In those cases, the tube simply helps supplement nutrition and hydration.

Daily care takes only a few minutes. With proper hygiene and regular checks, complications are relatively uncommon. Over time, the PEG will become less of a medical device and more of a tool that helps me maintain my health and energy for as long as possible.

Two weeks after my procedure, a nurse visited me at home. She was really happy with how it had healed and completed the first advance and rotate. This involved the external fixation plate being unclipped, the tube pushed into the stomach 5cm and returned to the position against the stomach wall. It was then rotated 360 degrees. This would need to be undertaken often to avoid stomach lining growing over the internal plate.

Things I Wish I Knew Earlier

If I could go back and reassure myself and anyone else before the procedure, here’s what I would say:

• The procedure itself is quick and generally safe.

• The recovery discomfort is manageable.

• Learning to care for the tube becomes easier with practice.

• It can significantly improve nutrition and quality of life.

• Many people have a PEG and have only said how it has positively helped them.

Final Thoughts

Facing a PEG procedure can feel daunting, but for many it becomes a positive step toward better health and stability.

Every experience is unique, but with the right support, education, and patience, adjusting to life with a PEG is absolutely possible.

If you’re preparing for this procedure, remember that asking questions, seeking support, and taking things one day at a time can make all the difference.