My Precious: embracing the beauty of my fistula
Thursday, April 15, 2021
Eilidh Mackay shares her unique life story of how she has survived two cancers and gained a fistula bag in the process, making her feel more beautiful than ever
My name is Eilidh Mackay, and I’m not your average 19-year-old. I’ve survived two cancers: acute lymphoblastic leukaemia and thyroid cancer. Both came with their fair share of battle scars—I now use a wheelchair, and I have a fistula bag—to name but a few!
Dancing with death
In 2016, aged 14, I was diagnosed with acute lymphoblastic leukaemia. I was admitted to Glasgow Royal Hospital for Children (the superhospital), where I received intense chemotherapy. However, I reacted badly to the chemotherapy and, not long after starting, became extremely unwell. I was transferred to intensive care, and, from that moment on things went from bad to worse.
I can’t remember much about this time, as, not long after going down, everything went black. I was ventilated and placed into an induced coma. Whilst in my coma, my parents realised how unwell I really was. It was discovered that my gut had perforated due to the intense chemotherapy. It seems that I was literally dancing at deaths door.
My only option was emergency surgery, with only a 50:50 chance of pulling through. My parents signed me over to my surgeon, trusting him to save my life. This he did, and when I awoke from my coma, I was amazed to learn that 2 whole months had passed. Looking back at this time, I still feel guilty that my parents had to make this decision, but I am beyond thankful that they did.
Eilidh’s final stoma bag change the night before her reversal (left) and after Eilidh got home, she slowly starting to get used to her fistula (right)
My first stoma
My parents decided not to tell me about the huge change to my body following my surgery. When I asked what was on my tummy, they told me it was a dressing. However, when being weaned off the strong drugs I was on, I became suspicious of what they were hiding behind the towel. They finally let me in on their secret: I had a stoma.
My first reaction was ‘What on earth is that!?’. I could not believe that my parents had given their consent for me to get this thing. I hated it! I didn’t want to learn about it or work with it. I didn’t want anything to do with it. So, my mum learned everything there was to know about my stoma.
After leaving intensive care, I spent months on the ward building myself back up and relearning to do everything for myself again. Before leaving the ward, I finally got to meet this surgeon I had heard so much about, Dr Graham Haddock, the man who had saved my life. My hero! When I finally got home in May 2017, it was the best feeling in the world.
Over time, my scar became less sensitive, and I got more used to having my bag changed. Still, I held off from fully embracing my bag, as I knew that one day, I would be saying goodbye to my stoma.
Eilidh celebrated her 16th birthday in hospital, recovering from her reversal
After a long year of living and working with my stoma, I was finally given the opportunity for a reversal, and I accepted. In August 2017, I went back into hospital to say goodbye to my stoma. The surgery lasted 7 hours, due to how stuck everything was from my first operation. However, the procedure went well, and my recovery started.
I will always remember how determined I was to get up and move onto the commode to do my first poo. The nurses and my mum helped me over, but I couldn’t do it with them in the room. Mum kindly hid in the bathroom, and the nurses stood outside the door. It was time to face the dealbreaker question—if I could poo, it would mean that the surgery was a success, but, if I couldn’t, it meant that something had gone seriously wrong. I managed to poo, and it looked like we had a success.
Unfortunately, this success did not last long, and my body started to turn against me. Late at night, after enduring severe tummy cramps, it was discovered that I had a leak in my bowel. Before I was rushed into surgery, I managed to get to the end of the Spiderman film I was watching, but that was the only thing that went to plan. Everything inside of me was a mess, and this time after another operation the surgeon was unable to stitch my wound back together.
Eilidh’s top tips
What’s your name? – Giving your stoma or fistula a personal name can help you find the beauty in it. If you are looking for a name, you can always find inspiration from the name of your surgeon or stoma nurse, or from a character in in a film, book or show that you watched beforehand.
Slow and steady – Not many people are happy when they see their bag for the first time, but try not to judge it too fast. By learning about it and working with *your* body, you will soon see the beauty in it.
Packed and prepared – With the right routine, leaks should be a rare occurrence. However, wherever you go out, it is always worth having extra supplies in a wee backpack or your purse. Being organised and prepared will put your mind at ease and make sure that you never end a night with poo running down your leg.
The ostomate community – Having a bag can feel isolating, but social media makes it easy to connect with others who share this special part of your body. You can find people with all types of bags, formed from a variety of different diagnoses, they are part of the ostomate community. The community is full of people who are there to understand and support you through tough times, as well as remind you that you are not alone.
Dreaming of cheese
I woke up not only to the shock of learning that I was back to square one, but also to find a vacuum sucking something from my tummy. That wasn’t the worst thing; I was told I couldn’t eat or drink until my wound closed. The vacuum worked day and night, sucking the output into a container, and pulling the sides of my skin together. This was a long process, to say the least. Every 2 days, I went to theatre to have the vacuum changed and replaced. This is how I spent my 16th birthday, although I did get a crown, which I wore every time I went into theatre, so it wasn’t all bad.
I formed great bonds with all the nurses; I painted their nails at the end of their shifts, and I also created stuffed animals for all the theatre staff and my surgeon. I craved food so badly, especially cheese. I would sit in bed and watch videos of people making macaroni cheese to help to fill my stomach with imaginary food. After months of not eating, I began to take wee dips of the sauce from my mum’s spaghetti carbonara, and, one night, I accidently ate half the tub… whoops.
Goodbye stoma, hello fistula!
One day, I went for my vacuum change to find a different surgeon doing it. All went well that day, but, on the next change, it was noticed that the vacuum had been placed too low, and it had caused my bowel to burst. Goodbye stoma, hello fistula!
An enterocutaneous fistula is a channel between the bowel and the skin. Just like a stoma, a fistula gives the bowel’s contents a shortcut out of the body, but, unlike a stoma, the body creates the fistula all by itself. Some people have a fistula and a stoma, and they will each need a bag. I just have a fistula by itself. My fistula is cared for much like my stoma was, but is more sunk into my skin, which can make forming a tight seal with the bag a nightmare.
I have become attached to my fistula, but I need to do what is right for my body. I have spoken to a specialist consultant, who feels confident in giving me reversal surgery. All being well, this is planned for the end of this year. Her plan is for two surgeries. The first will be to remove my fistula, tidy up my tummy scarring and give me a deliberate stoma. The second will be to reverse the stoma fully. This is not what I wanted to hear, but I understand why two surgeries are required, and I couldn’t be happier.
I have learned so much over these past years, first about my stoma and then my fistula. I have finally understood that I need to work alongside it, not against it—to find out what works best with my body. Even though I may share a similar condition with others, it does not mean that stomas or fistulas all work the same.
Food was one of my main problems, and it took me a while to realise that different foods make the fistula’s output act differently. I have learned the hard way and unfortunately have had to give up eating chips and rice, which I am really not happy about! I have learned to control the consistency of the output—I can thicken it by eating starbursts or loosen it by drinking fresh orange juice.
I am a member of a local gym, where I am working on gradually strengthening my muscles. The placement of my fistula does mean that I struggle with certain movements, but I do not let this put me off trying new things.
I have come a long way. As I write this, I am in the best possible place with my life. I have been in remission for nearly 2 years from my acute lymphoblastic leukaemia and my thyroid cancer. I am able to walk short distances unaided, and I have given the most important people in my life their own standing hugs.
This is me, and this is my bag
At the end of 2020, 3 years since meeting my fistula for the first time, I decided it was time to bare all and show the world what I had been hiding. I started using Instagram to reach out to people in a similar situation for mutual support. I discovered a full community of different people who have embraced their bag and are proud to show off its beauty. This has helped me to finally feel beautiful and proud of my fistula bag and all the scars surrounding it.
When I bared all and showed off my fistula bag on my Instagram (@eilidhmackay_x), the support I received was immense. Since that day, I have been expanding my page to help educate others on living with an ostomy. I hope this helps create a future where people are more understanding of invisible illnesses and living with a stoma or fistula.
I discovered one of the best ways to help people accept their bags was to break the stoma stigma and name it. As weird as it sounds it really helps, as it makes it much more personal to you. My family and I spent a while trying to think what name to give to my fistula. I felt that she was a girl, but I did not know what kind of name she would have.
The name came to me when I thought about the surgeon who created her, Dr Graham Haddock. He is a huge fan of The Lord of the Rings, and the last time I saw him, he showed me the ring that he had bought for himself while in New Zealand. It was just like the one in the film. ‘I’ve got it!’, I thought, ‘In the film, Smeagol always refers to the ring as his “precious”, so why don’t I call her Precious—or Wee Presh for short?’ From that moment on, that’s who she’s been: my Precious.
Eilidh Mackay is 19 and lives in a small town in Scotland, where she’s relearning to walk after surviving two cancers