Introduction
In August 2015, I was diagnosed with tongue cancer, and have been treated with surgery and radiotherapy. This blog focusses on the role of the JEJ tube in my treatment, which I was told is unusual in head and neck cancer cases. Please feel free to ask / comment about this or any other aspect mentioned below.
I’m now several weeks post radiotherapy, have stopped feeding through the JEJ, and am waiting for a green light for it to be removed. Given that the use of a JEJ for Head & Neck Cancer seems to be relatively rare / undocumented compared to a PEG, I’ve offered to post my experiences here for others to share.
Context
Diagnosed with tongue cancer, the MDT agreed surgical removal was the right intervention. This would be a 14 hour operation to open up the mouth by cutting through and opening up the lower jaw for access, remove the cancer, extract lower left teeth, replace tongue tissue with a forearm flap in hole on tongue, attached to blood vessels in the neck, perform a bilateral neck dissection, insert a temporary tracheotomy and NG tube, close up the jaw with a titanium plate, and repair and make good the arm with a skin graft from stomach. Stitch up stomach.
There would be time in intensive care, then in high dependency bed in the head and neck ward.
About two weeks later, and the big operation is over. Recovery is underway. The histology is back. The cancer was removed. However, it was an aggressive form, radiotherapy is recommended.
I've eaten nothing since the operation, have spluttered with the odd glass of water but not been able to swallow anything. I am hoping that swallowing will just come back once all this swelling in my mouth goes down. It feels like most of my mouth is still out of action, so of course I can't swallow yet.
The consultant discusses eating. He says that he would like a stomach tube fitted. Firstly, so I can be discharged from the surgical ward without waiting for swallowing and then feeding to return. And secondly, because the radiotherapy will reverse any recovery, typically disabling the swallow again for a period.
To be honest, this seems sensible, but I don’t want to admit – mainly to myself – that I will not be able to feed myself in the near term. Anyway, reluctantly, I agree that this should be done, and they line me up for another operation a few days later.
The operation
A general surgeon, a lovely chap, meets me and explains that he will use keyhole surgery to fit a PEG feeding tube, and it should all be done in about an hour. I take the walk of fear up to theatreland again, where they put me to sleep at about half eleven. It’s about 4pm before I get back to the ward, which I’m a bit confused about as several hours seem to have gone missing.
The ward medical staff are somewhat alarmed by the outcome of the operation, which didn’t quite go as planned.
Anyway, it appears that when they got inside my abdomen to have a look, there was a lump on my bowel that didn’t look right. The surgeon decided to remove that short section of bowel with the lump, to abandon the intention of fitting a PEG to my stomach and instead fit a jejunostomy (JEJ) tube slightly lower than where he’d removed the bowel section.
This raised two concerns: 1. What was the lump? 2. Would a JEJ tube do the job?
The answer from the first question came back after ten days or so – the lump was nothing sinister – most likely some pancreatic tissue that rubbed onto the bowel when I was developing in the womb. Phew, pleased about that.
On the second question feedback from the ward staff was that not many were familiar with the use of a JEJ. It also turned out that the radiotherapy team, who came on the scene later on, were also not familiar with it, and had previous experiences where patients with a JEJ experienced problems with feeding during radiotherapy. However, both the head and neck consultant and the general surgeon were confident that it would be fit for purpose for both imminent release from hospital and for the radiotherapy to come.
Managing the tube
The JEJ tube is a thin rubbery tube that goes into the abdomen and on into the small bowel. Where it exits the abdomen, it is held in place with a plastic plate that is attached to the skin with three stitches. A length of tubing, about 3mm outside diameter and 50cm long, is then terminated with a stopper and a flow control device.
The key difference between a PEG tube (which flows into the stomach) and a JEJ tube (small bowel) is that a PEG tube can be used to deliver much larger “meals” in one go (known as bolus feeding). It has a larger bore tube, and is attached to the stomach that acts as a reservoir for food to be processed by the small bowel.
The JEJ attaches to the small bowel direct. This means that only a small amount of pre-processed “nutrition” can be put through at a time. In practice, this means that the tube will be in operation for many hours a day to deliver the calories needed to sustain current weight and fuel the energy needed for recovery.
The dietician suggested that for a JEJ, the 1.5 calorie per ml of feed product would be suitable. And that I needed some 2500 to 3000 calories per day at present. The maximum recommended rate for feeding continuously into a JEJ is 125ml per hour. This meant that I would be hooked up for 16 hours per day, until I could start to take food orally.
Medications
The JEJ tube is suitable for use with certain medicines. These need to be in a liquid form and capable of being taken orally. Examples that worked for me include effervescent forms of paracetamol / cocodemol, solutions of codeine/morphine/ibuprofen or crushed and dissolved tablets. A pestel and mortar is ideal for crushing tablets as you can get it very fine. Medicines that didn’t work were those that came in capsule form, or that didn’t fully dissolve. I had problems with one medicine that didn’t fully dissolve – the sticky residue nearly blocked the tube on two occasions, after which I didn’t use the tube for it again.
Protecting the tube
Looking at the tube, protruding from my tummy, with just a loose plastic plate holding it in place, it looks quite vulnerable to being pulled out, bashed, and scuffed with clothing and so on. Indeed, while in hospital, another chap was re-admitted to have a JEJ refitted after he’d accidentally pulled it out by standing on the end (!).
I decided I’d cover the plate with a 5cm square dressing (from Tesco) taped on with 3M micropore tape (from chemist or from hospital ward - Tesco tape gave me a rash). And more tape to hold the tubing to my skin so the end didn’t dangle where it shouldn’t. And then attached to my clothing (shirt or pj’s) by tape to hold the end in place.
The square dressing is replaced daily at shower time – take off before, wash carefully around in shower, dry carefully, remove dried gunk from tube entry hole under plate, then cover with new dressing.
So far so good – this setup has worked to date for me.
Managing the stitches
There are 3 stitches holding the plate to my skin. Within 2 weeks, one of these had come undone. Within a further 2 weeks, the other two came undone. On each occasion, I took the view that it had to be re-stitched urgently. The alternative was a much higher risk of the whole thing coming out and needing to be re-fitted with another operation.
Each time was a trip to A&E – and the waits associated with this. However, these got shorter once I got to know the triage nurse, who took pity on my situation and bumped me up the queue. Also, it paid to be nice and friendly to the doctor on duty, who enjoyed the chance to practice his surgical knot techniques.
Managing the feeding volumes
The tube came with a pump and an infinite supply of food. You ring the food call centre and they deliver more boxes of feed along with the tubing “giving sets” and syringes required to administer it.
The hardest period is when you need 100% of your calories from the tube. This means that you will be feeding for most of the day. With my need for 3000 calories to repair maintain and rebuild myself, this meant 16 hours a day with the pump running. For me, I didn’t mind having the pump running overnight – I was used to it from hospital, and it got a large chunk of the feeding done while I was asleep, and practically, it’s not possible to get all the feed pumped without some overnight feeding. Also, with the tube in, I’m not able to sleep on my side so the risk of tube entanglement is low.
The tube feed and pump also came with a carry rucksack – this houses the pump and a bottle of feed along with other bits to allow you to be more mobile while feeding. I did use this at the start, while I needed to tube feed during the day.
Over time, as my swallowing improved, I reduced the amount of daily intake by tube correspondingly. A big milestone was reducing to just overnight feeds, and another was halving that after radiotherapy to every other night.
Managing weight versus calories
I used a notebook and spreadsheet to plan and record my calorie intake (tube versus oral) and weight. Once I was eating significant quantities orally, the notebook collected details of each meal or oral calorie intake, drink, plate of food etc. Estimating calories in stuff can be done by looking at packaging, or there are internet tools for calorie counting. I took the view that getting a rough estimate of calories per meal/drink was adequate – to the nearest 100 or so is usually close enough.
This enabled me to track calorie intake versus daily target. The daily target was calculated by my dietitian – and confirmed in practice by tracking how many calories per day are required to maintain the same weight. This is where the spreadsheet comes in – a fairly complete record of calorie intake is needed, along with relatively regular weight readings. These can be used to generate nice graphs showing for example calorie intake versus weight.
Summary
Overall, the JEJ seems to be a bit more fiddly to use than a PEG, but with attention to detail, and the perseverance to make it work, it provided me with support for my nutritional needs during and after head and neck cancer treatment.
