Confessions of a Tubie Tween

With multiple food allergies and a chronic inflammatory disease to contend with, at seven years old Bella Gray had a G-tube inserted. Now in her late teens and tube-free, the wildlife photographer and passionate vegan reflects on her tube-feeding experience.

We’ve done some online stalking, so I understand you had a G-tube from age seven to 11. Is that right?

I’d say around then, yep.

And you needed the feeding tube because you have a condition that makes it hard to eat - one that I’m not even going to try and pronounce!

Yes, I have eosinophilic oesophagitis (EoE) and so I was failing to thrive from a young age. I was drinking formula from a very young age - since I stopped being breastfed, I think - and I just couldn’t drink enough of it. That’s why our decision was to put in the G-tube and I was on it for four years.

Were you drinking commercial formula designed for tube- feeding? The stuff Arlo had smelt horrendous.

It was probably worse, because it wasn’t dairy-based. But the thing was, I actually quite liked it. I guess because it was a comforting taste for me – even though so many people had tasted it and were like, ‘how do you drink that? It’s disgusting!’ and spat it out.

I was so attached to that one that even when the new flavour came in - the vanilla - I was like, no, I don’t want it. I want my gross-tasting one! And still to this day, sometimes I’ll have moments where I feel like I want that taste again. I’ll always remember that taste and I liked it, but I couldn’t drink the amount that I needed to.

At seven years of age, how did you feel about getting a feeding tube?

I was anxious, understandably. It’s a big thing to have to happen. But I was at that stage where I was so underweight and so unhealthy that I felt like my body was telling me I needed to. I knew that it was something that I had to do and I’m so happy I did. If anything, I wish that I’d had it earlier. I quickly began thriving and was at a much healthier weight.

How did you feel about your button in social scenarios, especially as you got a little older?

Surprisingly, I got used to it quite quickly. But I definitely didn’t like showing it. I used to do cheerleading and I would wear skin-coloured leotards under my uniform because I was a bit embarrassed about it.

Now I look back and I wish I wasn’t so embarrassed of it, because that was such an important thing that I needed, but I didn’t really tell anyone about it. I had to get fed at school with a teacher’s aide, but I used to go as far away from the students as I could, because I didn’t want them to know what I was doing.

I had a bad experience when my Grade 2 teacher told the class about my tube – for safety reasons – and made a big deal out of it. I wish it had been explained in a positive way instead of something that was a negative thing. Okay, so it’s not necessarily good that someone needs a feeding tube – but it is good for them. It’s what they’re going to need to be able to have a healthy life.

While you were cheerleading, did your button ever get pulled out?

No, actually. The leotard under my cheerleading uniform was to help with protection as well, as it held the button close to my skin and made it less easy to grab. Mine wasn’t a MIC-KEY-style button, so it would have been pretty hard to pull it out, and I was very lucky I didn’t, because that would not have been fun.

So your button didn’t have a balloon?

No, it was more like a hard mushroom. It looks the same on the outside, pretty much, but on the inside it’s a hard thing that’s stitched in place. They’re harder to remove, but it did pop open and leak stomach acid stuff. That happened quite a lot, which was frustrating, because then I’d get a little stain on my shirt that smelt like vomit.

What was it like having a younger sister who didn’t have to go through any of this stuff?

It was hard to see her eating foods that I couldn’t eat. And I felt like she was taking the things she could eat and do for granted. She didn’t realise or couldn’t really understand that for me, eating without problems is nearly impossible.

What’s an example of something she could do that you couldn’t?

Well, I remember when I had my feeding tube I could only sit on the left side of the car because otherwise the seatbelt would rub against the button and hurt. She was only little so she didn’t understand that. It’s the little things that people without tubes don’t realise or even have to think about.

Is there anything else you couldn’t do with a feeding tube?

I couldn’t go in spas or anything like that when I had my feeding tube. On holidays I would see others go in and I just had to dip my feet in. Just things like that where I had moments of realisation like, oh, I am different. Or, I can’t do that like they can.

It’s also hard when you’re young and you don’t really understand the reason why you can’t do things. I knew I couldn’t because Mum said I couldn’t, but I didn’t actually know why. I know I have a feeding tube, but what’s the reason?

How do you think parents should explain this to young kids?

I guess I’d just say that if you go in something like a spa you could get sick – and you don’t want to get sick or hurt. Even though it might seem like it’s a nice thing to go in there, for you it could cause damage. It’s hard for a kid to hear. I know Mum did try to explain it to me but I just didn’t understand at the time.

It’s just not very fun, is it? On the flipside, you were a lot better health-wise. Were there any things that surprised you, in a good way, about your feeding tube?

I definitely did get a very big attachment to it – a bond to it, in the sense that I both did and didn’t want it to be removed. I had lived with it for so long that I had become reliant on it. Obviously, because that’s what I used for most of my food, but it was also a comfort – and I felt like it was a part of me that was being pulled away. That was quite difficult to get my head around.

It’s interesting that you felt that way – that your tube was, like you say, a part of you. But surely you were excited to be getting it out, too?

Yes. But because I was only seven when I got it, I couldn’t really picture what it felt like to not have a feeding tube. To me it was a weird feeling. Most people can’t imagine what it feels like to have a feeding tube. But I was thinking, how does it feel not to have this part of me?

Also, the problem didn’t go away. I still had EoE and all of these allergies. I just had to go back to drinking the formula and working really hard to eat food. To be honest, the tube was the easier option.

Do you drink formula now as part of your diet?

No, these days it’s all food. I’m vegan now and that has really helped me find where I fit. With my EoE I could never really swallow meats anyway, so I wasn’t getting any nutrition from them. When I found veganism and these foods that were actually making me feel good, I really saw myself thrive. I’m as good as I’ve been on this diet and really proud of how far I’ve come.

Does your passion for veganism extend beyond your diet?

I’m vegan for ethical reasons – for the animals and for the planet. I’m also a wildlife photographer. I photograph birds, so I’m very into nature. Going vegan was the best thing I’ve ever done for my body and for my ethical beliefs. Obviously it doesn’t work for everyone, but for me, a vegan diet has really changed the way I live.

That’s wonderful to hear. I want to finish by asking, what advice do you have for young people who are new to tube-feeding?

Try not to compare yourself to others. I always did that and it wasn’t good for my mental or physical health. Try to realise that you’ve got to do what’s best for you, not what you think people your age should be doing. Just do what’s good for you.

Bella’s mum, Sarah Gray, is the founder of ausEE Inc., a Sunshine Coast-based Australia-wide charity supporting people and families living with an eosinophilic gastrointestinal disorder (EGID) including eosinophilic oesophagitis (EoE). You can read about their work and find a bundle of EGID and tube-feeding resources at ausee.org and feedingtubeaware.com.au