FIGHTING THE IBD FIGHT: WITH IBD WARRIOR PRINCESS
An interview by Dr Sunni
Our next fighter is a well know Instagram influencer - Amy; a full-time account assistant, a health and self-care blogger and an IBD fighter making more people aware about living with a stoma. Dr Sunni: Amy, tell us all about your journey with IBD and what you have learnt along the way? Amy: My IBD journey has been quite a long and complex one. Though it sounds cliché, complex is a word that probably a lot of patients don't like hearing anymore because it seems to be the term that a lot of doctors tend to use to label patients that have a lot of problems.
A lot of my memories from my young childhood are from IBD. I got diagnosed with Crohn's disease aged 7 and was treated for Crohn's disease right up until I moved to the adult clinic at age 17. I had a lot of treatments and infusions, as well as being put on the elemental diet (a liquid only diet to give your gut a rest).
It was when only when I went to the adult clinic at 17 that I had a colonoscopy and an endoscopy, which showed that my IBD was in the large intestine - in my colon. So, all the treatment I had had as a child for 10 years had been aimed at treating Crohn's disease in my small intestine.
Unfortunately, that also meant my large intestine had gone without treatment for 10 years leaving it intestine “shot to pieces” as quoted by my Gastroenterologist who said it was one of the worst he had ever seen.
We tried a targeted infusion, but unfortunately it was decided in 2011 that I was going to have my permanent ileostomy to save my life. After the surgery I was told that they found a non-cancerous tumour on my transverse colon that weighed five kilograms and had started to seep out and burst.
The surgeon had said it was very touch and go on the table - I needed lots of blood and that I was within a few hours of losing my life. When your life is put in front of you like that - it is freaky thinking that I was so close to losing my life and that I didn’t know about it.
You really do not know what is around the corner, and if my dad hadn't taken me to the hospital the weekend prior to my operation I probably wouldn't be here now speaking to you about this.
It gets me quite emotional, but I owe a lot to my dad, the medical team who literally saved my life, as well as all the people who have supported me on this long and complex journey. Dr Sunni: What would you tell your younger self, knowing what you know now, about IBD? Amy: As I started so young with my IBD, I think I would just look back and firmly but reassuringly pat myself on the shoulder and look myself in the eyes and say “it is going to be okay”.
Though it might not seem like it now and it might take several years for you to come out the other side, you will eventually find something and come out the other side. Keep On Fighting Dr Sunni: What inspires you to keep fighting daily? Amy: My uncle inspires me hugely to deal with the battle of IBD. Unfortunately, I lost him quite a few years ago to complication from Ulcerative Colitis. He had a stoma bag for a few years before he passed away, and that inspired me hugely to take mine in my stride and to do things to make him proud because he really grabbed life and ran with it to make the most out of it.
Though I have my limitations, and I still have illnesses he really does push me every day. He's the voice in my head, along with the amazing people online that inspire me that I follow - my friends, my family, my other half.
They all inspire me to keep fighting and try to be the best version of myself that I can be. Because I'm not me. I'm not bowel disease. I'm not Amy - the bowel disease girl. I'm not Amy - the girl with the stoma bag. I am Amy - the girl who has a stoma bag. I am Amy - the girl who has IBD.
These might seem very similar, but they are two separate things, because by saying I'm Amy, who has the bag, or I'm Amy who has Crohn's disease, and it's showing that my identity and the illness and the stoma bag are not the same thing. I'm my own person in my own right, despite those battles. Dr Sunni: How do you deal with food and gut health? Amy: Food has always been quite a sore subject for me up until probably a year after I had my stoma surgery. I have always had a hate relationship with food - even the smell of it for many years made me feel so sick.
Eating for me was a chore - I would try and force food down and I'd throw up or I'd start retching and gagging as if I was going to throw up. Food was just not fun.
I thought that after I had my stoma surgery, I would have an appetite, and I was so excited to try food again that when my appetite didn't return immediately after the surgery, I was quite despondent.
6 months after, and with a lot of trial and error, including to this day I absolutely love food, even if there's things that I can't eat and must steer away from. Dr Sunni: What would you advise others with IBD? Amy: Everyone's IBD journey is different. It's not a one size fits all. What affects me might not affect you and vice versa. What treatments work for me might not work for you or vice versa. I have a few problems with my ileostomy that play up every now and again. Those things might not affect you if you have ileostomy surgery or you might have your own problems.
You might be completely problem free when you've had a stoma or had surgery. It is so different and so vast and varied for everybody.
One piece of advice I would give is to hold on to the positives, even if it's something little. What you might think is a little win when you are flaring with IBG might be a huge win.
Reach out to whoever you feel comfortable with, it doesn't have to be to a family member or a friend if you are worried that they won’t understand. There's so much support – online, Instagram, support groups, your IBD nurse and IBD team. Don’t suffer alone because there's so many people that want to help, including me.
"Take each day, literally one day at a time, hour by hour, minute by minute, second by second. Just do what you've got to do to get yourself through and do not suffer in silence"
- Amy: IBD Warrior Princess