Background:

I was diagnosed with extensive tongue cancer in 2018 and underwent a long operation in mid-November. I had most of my tongue removed and other structures in my mouth such as tonsils also went. I had a bilateral neck dissection. My tongue flap was fashioned and the hole in the floor of my mouth covered with a large piece of meat from my thigh.  I woke, as expected, with a nasal tube and a temporary tracheostomy and spent several days in the High Needs Unit.

Once on the ward, the Speech and Swallow therapist visited and I was allowed to sip water. I developed the beginning of a chest infection. I had a fluoroscopy and was found to be aspirating. I was fitted with a RIG shortly before leaving the hospital. I have had swallow exercises and visits to the therapist but in all the fluoroscopies over the first year I continued to aspirate. I had another one in December last year and was still aspirating. So no swallowing for me,

Looking After My RIG

1. At First:

There’s a hole going into the stomach. This stoma needs to be kept clean and free from infection. In the first couple of weeks the RIG needs to be turned in the hole several times a day. Over the course of a couple of weeks the buttons which are securing a stable site for the RIG to sit, fall off and the stoma is as healed as it will ever be. 

2. Avoiding infection:

I shower daily and take care to wash under the plastic flange and dry it carefully. I find in summer if I am doing something that will make me sweaty I can avoid the skin getting irritated by putting gauze under the plastic flange and changing it several times a day. There is a lot of information that says not to do this but I find it works well for me.

Occasionally, for no reason that I can identify, the area may become a bit mucky with stuff oozing around the plastic. I clean it and apply Pimafucort cream and start to use the gauze for a while, changing it at least three times a day.

3. Granulated tissue: 

This is quite a common problem and one that I have from time to time. If it’s minor Pimafucort cream will help. Otherwise the District Nurse may have to apply silver nitrate to it.

4. Looking after the Balloon

The balloon holds the tube in place on the inside and stops it falling out. I check the water once a week. In some places the District Nurse does this and in some places nobody seems to mention this. I get the syringes and water in the supplies I order.  Basically it’s a matter of filling one syringe with the sterile water and using the other syringe to extract the water from the balloon. I use a piece of tape to hold the flange against my stomach when I do this to prevent the tube falling out. Checking the water levels helps in that you can tell if the balloon has a leak. Check how much water is in the syringe then put the correct amount of new water into the balloon.

For three years I had no trouble with the balloons but they seem to have changed the supplier of the feeding tubes and I’m finding they only last two months at present.

5. Checking the Balloon is Snug Against Your Stomach Wall:

I find that from time to time my stomach decides it wants to get rid of the balloon and starts tugging at it to move it out through the duodenum. There are markings on the outside of the tube and it’s important to check that the tube is where it’s supposed to be. At present, because I lost weight last year, mine should sit at two cm. That will vary from person to person. I think if you have a Mic-key button instead of a dangler you won’t have this problem.

6. Tube changes:

The District Nurse visits every 3 months to change my tube but I have done it myself when the tube has suddenly fallen out. I do have the option of ringing the RIG nurse at the hospital and going up there but it is important to get the new one in as soon as possible. They say the stoma starts to close after about 20 minutes. It was certainly quite hard to get it in when it fell out during the night and I didn’t notice until the morning. 

Emergency Kit

I have a bag with my next tube, some spare feeding syringes, water for the balloon and syringes and 5 bottles of food. 

It also contains a catheter which can be used to hold the stoma open if necessary. I keep this bag handy to the door and I take it with me if I travel, 

Day to day 

I keep in my car a little bag with some feeding syringes so I can at least have water if delayed anywhere. And I take a feeding syringe and jug in my bag if I’m going for an outing that might last some time,

The Process of Using the RIG

1. Equipment: 

I have little plastic jugs and modified plastic hose clip which I find useful. I have a powerful 1000 wt Nutribullet to blend food ( see below)

2. Feeding is really a three step process:

Flush with 30ml of water

Put the food in either by gravity or with the syringe

Flush with water.

3. I find it can be quite hard to keep the inside of the tube clean despite flushing. The design is such that if food comes back up the tube it gets caught in the v between the two openings. I have found pipe cleaners useful and also carbonated water.

4. What if food or medicine gets blocked up in the tube?  I have used a number of different strategies with success. Fill the tube with water or carbonated water and wait for 5 mins or so then try gently pushing and pulling on the syringe.  Get some Coca Cola and try that. I have used a pipe cleaner too.  The one thing I’ve found impossible are the little balls of omeprazole. I had to change the tube once when they were stuck.

Medications

Although you can get most medications in a liquid form, some have very limited shelf life and it’s annoying to have to collect stuff from the pharmacy all the time.

You can crush most pills between two spoons or with a pestle on a spoon – or there are pill crushers. I have one but it’s not very effective. Many pills dissolve easily in water too. I mix the crushed pill in mashed banana and put it down the tube. Yoghurt works fine as well.

WARNING: you cannot crush slow release medication. I have had a couple of occasions when my GP has forgotten about my RIG and prescribed these so I make a habit of checking that they can be crushed at the pharmacy.

Adjusting to Life with a RIG

This is a biggie and was difficult for me at first.  This is what I do and it may not suit other people.

When I realised it was likely I would never eat again I was initially devastated. I thought about it, I knew that food and drink is such a big part of social life. People feel uncomfortable eating in front of people who aren’t eating. I decided to be up front about it all. If I’m at home, or with friends or my family, then I sit at the table and have my food with them. If it’s not convenient I sit and chat etc while they eat. I have cooked meals for people and sat and had my Ensure while they ate my food.  By and large food is the excuse for the gathering.  I think that if I had lost my legs it would be ridiculous to resent other people walking in front of me and I get pleasure from watching people eat my food. I think this has helped me to not mind when people are eating in front of me.

I also have the philosophy that this is how I feed myself now and if other people have a problem with that then it really is their problem not mine. This is how I deal with the embarrassment issue. I’m probably still working on this when among strangers if I’m honest.

The Food

My instructions on using my RIG included a firm DO NOT PUT ANYTHING OTHER THAN YOUR PRESCRIBED FOOD,MEDICINE AND WATER DOWN YOUR TUBE.  When I was told by the doctor to mix medicine up in stewed apple to put down the RIG I got thinking. I looked things up on the internet and realised that contrary to what I’d been told, there was no reason I could not put real food down my RIG and that they do so in other places in the world.

I had gone a year on nothing but Ensure and my stomach was rebelling. Also I think there is a strong connection between having a happy gut and mental health.  I decided to try blending meals to put down my tube and discussed it with my dietician who was supportive. So now I make my own food, plate it up, look at it, smell it and blend it. Tonight, for example, I had spinach, refried beans in tomato, with corn and nacho chips. It looked great until it was blended. I find my stomach feels satisfied now that I’m consuming a variety of foods. I’m not totally independent of the Ensure and I do get some pleasure from my food. When I visit my family, I have a plate of whatever they are having and blend it up and sit with them and share the meal.  I probably should state I don’t eat meat so I haven’t tried blending that. 

I realise this is not for everyone and I wouldn’t recommend doing it without a dietician’s support and I know it suits me because I like cooking too.

END

I can’t emphasise enough that this is just how I cope with my experiences.

Catherine Parr

Hamilton