My #GetYourBellyOut story: Kirsty

Growing up with a chronic illness was not easy. Up until my symptoms started when I was 8 years old, I was a happy, outgoing, confident child. I loved to be in front of the camera, or on stage. I would talk to anyone and everyone. I had so much confidence.

Then I got sick.

The first symptoms were pain, nausea, constipation, and really bad eczema that covered my body. I started missing so much school. I was constantly going back and forth to the GP who, eventually, referred me to the hospital, but the doctors said it was nothing more than constipation and started me on laxatives.

Unfortunately, things didn’t improve, and I ended up missing most of the school year (year 5). That year I got referred to Booth Hall Children’s Hospital and started the numerous tests it would take to get my diagnosis. They did Bariums, X-rays, CT scans, MRI’s and more, but in the end, it was a White Cell Scan that gave the results that allowed the doctors to diagnose me with Crohn’s Disease.
I was started on medication and was put on a liquid only diet that was administered via Ng tube [nasogastric tube – a tube inserted via the nose into the stomach), no oral foods or fluids other than water, and this continued for several months.

Things started to ease up, not completely, but enough that I could return to school in year 6. Although I had a lot of sick days and days where I got sent home from school because my symptoms were too distressing, but I managed to finish out the year and take my SAT’s.

In September 1998, aged 11, I started secondary school. A month in though, my health started to deteriorate. The pain got so intense; I would spend the days doubled over on the sofa. I was constantly being sick. Unable to go to the toilet. I couldn’t eat and the only liquid I could keep down was cola. I remember being awake all night because of the pain, having to run back and forth to the bathroom because I couldn’t stop being sick, my mum rubbing my back whilst I lay doubled up in pain, hot water bottle pressed to my stomach, tears streaming down my cheeks.

I can’t count the number of times I was back and forth to the GP. I eventually got an appointment to see my consultant, but it wasn’t for another 6 months.

Over the next few months my weight dropped from 5 stone to under 2 stone. Things got so bad that my parents took me to A&E and I was admitted. I was again put on Ng feeding and spent the next several months having tests and trying different medications; Mesalazine, Azathioprine, steroids, enema steroids, all to no avail. So, on April 9th 1999, aged 12, I had my first surgery. They removed my colon and fashioned an ileostomy, leaving the rectal stump in the hopes of reconnecting things in the not too distant future.

It was difficult afterwards to come to terms with having my insides on my outsides. For 6 months my mum had to change my ostomy bag as I just couldn’t deal with the stoma, I couldn’t even look at it. back at home I continued being fed nasogastrically. Over the next year or so, I was in and out of school, I rarely managed a full day, but I continued to keep up with my schoolwork. I found this time difficult because I lost my friends and I lost my confidence. My anxiety got really bad and I struggled to be around people.

Unfortunately, the Crohn’s in my rectal stump didn’t clear up and in 2000 I ended up back in hospital as I ended up with perianal and vaginal cysts and blisters due to the inflammation, it was that painful I had to be catheterised at times as I couldn’t urinate. I was put on steroid suppositories and then we tried infliximab but neither worked so in early 2001 they decided it was time to remove my rectum and make my ileostomy permanent.

Over the next 5 years, I spent more time as an inpatient then I spent at home.
I experienced a full range of Crohn’s Disease related issues from eczema, blisters and ulcers, fistulas, stomach abscesses, oral Crohn’s and more. And in that time, I had more surgeries than I could count. Many, many bowel resections, ileostomy refashions, adhesions, gynea surgeries, drains inserted, sepsis etc. I also spent most of my teens on parenteral nutrition (TPN), being fed via Hickman line. Or on liquid diets. I was on them that much I was trained so that I could set up my own TPN in the hospital and had my own pump for the Ng feeding at home.

I remember having my stoma refashioned once, and I went on holiday a couple of weeks afterwards and whilst I was away my stoma went black and fell off…. Yup, fell off! (I assume the blood supply was compromised so the tissue died). I finished my holiday then went straight back to the hospital when I got home to have more surgery.

The one thing I was most grateful for during those years, was the amazing nursing staff I had around me and my fantastic doctors and surgeons. But also, the teachers I had access to at the hospital school in Booth Hall and the learning mentor from my high school. I took my G.C.S.E’s whilst in hospital and I wouldn’t have been able to do it without them. I came away with 5 C’s and 2 G.N.V.Q’s in I.C.T.

When I was 15, I was transferred over to Hope hospital (now Salford Royal) as my doctors/surgeon had run out of ideas. I have had many more surgeries and flares since then. I stopped counting the number of operations at 30.

It was my late teens/early 20’s when I was put on Methotrexate and then Humira which kept my Crohn’s Disease relatively under control. I still had flare ups, a couple of major surgeries and a couple of stoma refashions, but things were no way near as bad as they were in my teens.

It was nice to be able to go on holiday, spend time with friends and family outside of the hospital, and try new things.

I’ve abseiled, scuba dived, kayaked, climbed Snowdon (3 times), cliff jumped, swam with dolphins, explored caves, done some travelling and so much more.

I’ve even recently started a blog and have a Crohn’s dedicated account on Instagram so that I can hopefully encourage other IBD’ers. And, maybe with my experiences over the past 25 years, to help or reassure just one person, would make it all worth it.

My health more recently is a bit more unstable, I’m having pain issues, the fatigue is a killer but I take each day as it comes and I’ve had the support of other IBD’ers, via GetYourBellyOut, who know what it’s like to have to make or cancel plans last minute, and understand that just because I’m able to do things today, doesn’t mean I’ll be able to do it tomorrow.

On the 9th of April 2020, it was my 21st Stomaversay. And yes, Crohn’s Disease has taken away from me, but if I didn’t have Crohn’s Disease and my ostomy, then I wouldn’t have made the friends I’ve got now, and I wouldn’t have done half the things I’ve done to fundraise and raise awareness for this amazing not for profit organisation.