Model Behaviour

Actor, model, writer and disability advocate Jess Cochran has had an NG, NJ and PEG-J. Here, they share a bounty of tips and tricks – and talk about adjusting to tube-feeding as an adult.

You’re twice a tubie. Are you happy to talk about when you first started tube-feeding?

Sure. So when I was eight, I had anorexia nervosa. I got really unwell and was basically on death’s door. My doctors had to eventually say, ‘sorry, she’s got to come in and start tube-feeding, otherwise this is going to end badly’.

I spent most of 2005 in the Royal Children’s Hospital and dealt with 20 nasogastric tubes in that time, which was so traumatic. It left me with PTSD afterwards, because they wouldn’t sedate me or even give me Valium when it was going in.

After I gained weight I was able to come off tube-feeds and come out of hospital, so I thought that whole part of my life was over.

What brought tube-feeding back for a second act?

I started getting things like back pain and joint pain, and symptoms just kept compiling. Eventually, in my mid-20s, I got diagnosed with Ehlers-Danlos syndrome, which is a collagen connective tissue disorder. It’s genetic. I also knew that something wasn’t right with my digestion.

I was always nauseated, had severe constipation and a lot of trouble eating food, but not in an eating disorder way. I’d recovered from my eating disorder and was a foodie, so I loved food. Eventually, when I was struggling to have even a snack a day, I knew that things had to change.

I switched gastroenterologists a year or so ago, and in my first appointment with the new one they said, ‘I really want you to go into hospital today’.

As it turned out, I have severe gastroparesis, which means my stomach struggles to empty itself. It’s a common condition of Ehlers-Danlos.

With this new knowledge of what was happening - or not happening – in your gut, what happened next?

Then Covid hit, and so a lot of 2020 was spent with me just trying to keep my head above water by eating what I could. But I was becoming a zombie - I was really exhausted. So then my gastro said, “Okay, I know that PTSD is a really big thing for you, but I think we need to try tube-feeds and see how we go”.

Just before Christmas we did a nasojejunal (NJ) tube to bypass my stomach because of my gastroparesis. By the end of January – in just one month – I’d bounced back so much that I was shocked. I mean, I knew I felt crap, but I didn’t realise just how bad it had been.

You recently had a percutaneous endoscopic transgastric jejunostomy (PEG-J) surgery, how have things been since then?

I had really severe pain in recovery and was in hospital for two weeks. I came home and had a pocket of infected fluid in the wall of my stoma, and since then I’ve had the start of hypergranulation as well. I’m an ex-nurse, so I know enough about wound care, but PEG-J care is different. It’s very specialised and I felt lost. Luckily, I reached out to my local community Facebook page and said, are there any PEG-J nurses out there? And found help that way.

What online communities have you found helpful throughout all of this?

Gastroparesis Australia – which is mainly a lot of adults with gastroparesis, a lot of whom are tube-fed – and Feeding Tube Australia, which tends to be more for parents, but there’s quite a few of us that are adults there too. They’re really good people who understand how isolating and stressful these times can be – and how you can’t always rely on medical people to take the time to assure you when you’re freaking out and give you the education that you need.

What does eating look like for you at the moment?

I’m on a litre of Vital 1.5kcal throughout the day. I’m a 24/7 feed person, because I can’t get my rate up yet. Every time I try to increase, my body just goes, nup. But being someone who’s a foodie, I refuse to not eat, so I do try to snack. My dietitian has said, ‘have whatever you feel like’. It’s more about keeping that muscle motility and making sure that you still have that enjoyment in your life.

Another adult with a PEG told me you’ve just got to keep that connection to food, even if it’s a bit risky.

I’ve got a friend who’s an amazing chef and she did a lot of training when she was PEG-J-fed. She’d be going around the culinary kitchen in her backpack, doing all of the things. Even though she really can’t tolerate digesting food at all, she still chews and sucks on food, so she still gets that mouth feel and that taste.

If tube-feeding is something you go into as an adult, you’ve already got a relationship and connection to food and it can be really hard, mentally, to have to separate from that. I think it’s all about moderation, so that you can still have that connection with food and not torture yourself. But also doing it in a safe way as best as possible.

Do you have any practical tips for tube-feeding?

I ordered a bunch of supplies from Stacey at Tubie Fun, which were really helpful for me. Having the syringe roll while I’m out and about means that flushing is a whole lot easier. Another thing I have is a thermos that can show you the temperature of the liquid inside.

Backpacks are also extremely handy. I have the Infinity Pumps, so I have the FreeGo stand, and that is an absolute godsend, because it can just sit wherever I need it to. And I have a multi-tiered IKEA cart that I’ve got organised with all of my syringes and giving sets, and stuff that I need for cleaning my PEG-J site.

I think people often aren’t aware, especially if they haven’t had other mobility aids before, that if you’re travelling on a plane, medical supplies don’t count as your luggage. So you can take all your feeds and not have to pay for excess luggage, because it’s medical supplies.

Another tip I have – and my gastro taught me this – is that if you find you have a blockage, get a 1ml syringe and squirt 1ml through. The pressure of a 1ml syringe is a lot stronger than a 5, 10 or 50ml syringe. And it works every bloody time.

What words of comfort or advice do you have for people who are new to tube-feeding?

It can be really scary and daunting, but there are amazing people and communities out there that will provide you with so much love and support. I went through a very self-conscious phase, especially when I had my NG, but you are doing what you need to do to live the best life possible. And if other people don’t get that, that’s their thing. If you feel confident enough, talk about it and raise awareness, then that continues to have a trickle-on effect.

Just remember that you’re just doing what you need to do to keep going and surviving, and there is no shame in having to have an alternative method of nutrition.