“Having my large bowel removed was one of the best things that has ever happened to me” – Rhiannon’s story

After almost two years of chronic diarrhea, stomach pain, doctors appointments, trialing different diets, stool samples, ultrasounds, blood tests and then finally a colonoscopy at 18 (I was drinking bowel prep while my classmates were drinking alcohol at Schoolies), I was diagnosed with Crohn’s disease.

I was first put on a high dose of prednisolone to try and settle the inflammation inside my large bowel, as well as azathioprine and sulfurzyme. It’s all a bit of a blur for me now and my mum remembers better than I do, but because of its horrific state, they wanted to remove my large bowel. My absolute worst nightmare. My specialist at the time fought for me, and I was approved for my first biologic drug – Humira. This treatment helped me to manage my disease for a few years, until it didn’t. Flare ups, then a perianal abscess and a fistula that both required surgery, meant that I was approved another biologic drug to try – Infliximab.

This eventually brought me back into remission and I was able to fall pregnant with my first child, Maverick, who is about to turn six. About three months after he was born, I broke out in an all-over-the-body rash that my dermatologist had no answers for, which was also later accompanied by crippling joint pain. This soon led to a hospital admission because I couldn’t move. Later, after an appointment to see a rheumatologist, we then added another chronic illness into the mix – drug induced psoriatic arthritis.

We moved onto Stelara with hopes that it would help settle both my Crohn’s disease and psoriatic arthritis and it did, for a while. I was finally back into remission. I got married, and then a month later I was back in hospital because I was passing a lot of blood Eventually things settled and I fell pregnant with my second child, Elke, who is turning three. At 14 weeks pregnant, I had emergency surgery to have yet another fistula drained. In the months that followed after her birth, I was sleep deprived and I wasn’t well, but I was also a mum of two and I just got on with it, because that’s what mums do.

On the 6th of April 2022, I had my routine appointment with my gastroenterologist who asked me how I was even functioning. The following day she had me admitted to hospital, 4 hours away from home. My son was 3 and my daughter was just 7 months old. A day later, the gastroenterology and colorectal teams decided it was time for my large bowel to go, and on the 10th of April 2022, my world would change forever. After saying my goodbyes to my husband and my daughter, I was wheedled off to theatre and woke up from surgery without my large bowel — and with my small intestine on the outside of my body, in a stoma bag.

Nothing could have ever prepared me for that surgery. It was hard and I had a really difficult recovery (if you know what a nasogastric tube is I’m so sorry), but after two weeks in hospital, we were finally on our way home. Myself, my husband, my daughter, and my life changing new poo bag.
You don’t realise how sick you were, until you’re not. But sadly this relief was short lived, and just months after my surgery, I was in and out of hospital with really bad small bowel blockages, which resulted in stoma revision surgery.

These two surgeries and the experiences that followed really scarred me mentally for a long time and I suffered with medical trauma, which made the next few months even harder. My perianal disease was no longer under control and I was passing blood and mucus from my rectal stump (the last bit of my large bowel that was stitched in place). I knew what this meant – it was time to say goodbye to my bum and spend the rest of my life with a stoma bag.

I went into my proctectomy surgery on the 12th of July 2023 with so much fear, terrified of what could happen in recovery. But to my surprise and my relief, my hospital recovery went a lot better than anticipated. Although I still have a wound (‘Barbie butt’ surgery is renowned for its long recovery time), I finally feel at peace with everything and ready to enter my thirties feeling better than I ever have.

I know the idea of having a stoma is daunting and can seem like the end of the world particularly if you’re younger like me, but I promise you, it’s not. As tough as everything has been, it has all been worth it in the long run. I’m forever grateful to my doctors and my stoma, for giving me my life back, and I wear it with pride.

If you are faced with this surgery, my biggest advice is to reach out to others who have been through it, because no one gets it like someone who has experienced it firsthand. And like every case, every experience is different. Physical recovery can be faster than mental recovery, so please be kind to yourself and take all the time you need to heal.

Because you will!

To learn more about living with a stoma, visit here.

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