Growing up with Crohn’s
I was diagnosed with Crohn’s Disease when I was 7 years old. This obviously had an impact on my childhood and teenage years and today I’d like to take you through some of these things. Everyone who is diagnosed with Crohn’s Disease is impacted differently so it’s not a “one size fits all” approach that can be taken to treatment as everyone’s bodies respond differently to the disease itself and to what extent it impacts them.
Being diagnosed with Crohn’s
Before I received my diagnosis, I displayed symptoms from as young as I can remember. These symptoms included the following:
– Bruising easily
– Stomach ache which suddenly came on very intensely
– Feeling sick
– Having no appetite
– Feeling cold very easily & struggling to get warm & stay warm
– Sores around the sides of my mouth & mouth ulcers
– Sores around my bum
– Blood around my bum & in my poo
– Feeling uncomfortably full when I ate little to nothing
– Aching joints
– Urgency to get to the toilet
– Fatigue
– Feeling like I couldn’t empty my bowels properly
– Constipation which could suddenly switch to diarrhoea
– Night sweats
– Difficulty sleeping
Tests such as endoscopy and colonoscopy, blood tests and CT scans helped to diagnose me with Inflammatory Bowel Disease and I missed most of the first year of Junior School due to being off ill and in hospital. This impacted me socially but thankfully I did well with my education as it was always something that interested me and something I was passionate about. It did suck seeing my friends being able to run around the playground without stomach pain, urgency to rush to the toilet and them actually having the energy to. Playtimes never appealed to me, especially in the colder months, because this would just exacerbate my symptoms and it made me feel even more like I was the “odd one out”.
I also struggled with travel sickness on top of my symptoms when I was younger, so this made me avoid going on school trips combined with the fact that I was so poorly.
Getting a second diagnosis
Because I was the third youngest in the UK to have Crohn’s when I was diagnosed, I went to Leeds St James’ Hospital once a year for a second opinion alongside seeing my paediatrician at Scarborough Hospital.
I had a bad experience that scarred me for life before one of my first colonoscopies which left me with Post Traumatic Stress Disorder (PTSD), alongside some of the other medical experiences I have had through my childhood and teenage years. Because of this, I didn’t have investigations such as this very often because of the fear and anxiety I had surrounding them. I also hated preparing for colonoscopies and endoscopies when you had to clean your bowel out because going to the toilet was so painful. It literally felt like trying to poop through the eye of a needle and I developed so much anxiety around it.
I was diagnosed with Crohn’s of the small intestine (where it most commonly is diagnosed) when I was 7.
Crohn’s Colitis
Typically, Crohn’s Disease is found in the small bowel but can actually occur anywhere in the digestive system from the mouth to the anus. There can also be extra intestinal manifestations of Crohn’s (signs & symptoms outside the digestive system).
When I was diagnosed firstly at age 7, I became dependent on steroids within the first years of my Crohn’s and it got to a point where even trying to taper down 1mg of steroids could throw me back into a full blown flare up. I also tried medications such as Mesalazine and went on liquid diets for weeks on end in the hope that giving my bowel some rest would help, but unfortunately, these weren’t very successful either.
At age 17, I moved up to the adult clinic and had investigations such as an endoscopy, colonoscopy and small bowel MRI for the first time in a good number of years. Tests revealed that actually my Crohn’s was in my large bowel (my colon, rectum and anus) which is why treatment had been so ineffective up to that point, as it was targeting the wrong area.
Finally, the reason why I had been feeling so poorly made sense.
As a teenager, I remember spending evenings pushing myself to go out to Asda with my Mum, to only feel faint when we were walking around and so weak, needing the toilet and ending up in tears because I longed for the life of a “normal” teenager. It’s safe to say that Crohn’s became such a fight for me, and one that sadly, at times, I honestly felt like giving in and just letting it win. I hated hospital after my bad experiences as a child, but my Crohn’s would flare so bad to the point I put off A & E for as long as possible and then would go in, so desperate to get pain relief.
Needing surgery
In August 2011, after trying more medications and treatments that didn’t work, it was decided that I needed an operation to have my permanent ileostomy formed (panproctocolectomy). A resection was initially mentioned but then at my surgical appointment, it was explained to me that this wasn’t an option due to the spread and complexity of my disease and that a permanent ileostomy would be my hope if I wanted to get better.
My surgery ended up saving my life as I’d gotten so poorly and surgeons also found a large, benign tumour the size of a watermelon in my stomach. I was told by my surgeon that my life was saved by a number of hours and that surgery was very touch and go. Knowing this the day after my surgery stirred up so many emotions. How amazing that they’d saved my life and that I was here to tell the tale but at the same time, how scary that I’d been so close to death without knowing!