What were your first signs of Crohn's?

Hello my lovely Comfizz readers!

November 20th is Universal Children’s Day #UNChildrensDay. 

Having been given a diagnosis of Crohn's disease at 7 years old, this is obviously something that had significant impact on my childhood.

A question I get asked quite frequently is: "What were your first signs of Crohn's?"

In this blog, I am going to answer this & give you a bit more insight into having Crohn's disease as a child (what I can remember of it any way, with a little help from my Mum!)

Malnutrition

As a toddler, I suffered with bouts of Malnutrition (where your body doesn't have the right nutrients) from being a very picker eater, weight loss & had loose stools & diarrhoea repeatedly. 

I'd never had the best appetite from being very young and this was something that would become increasingly apparent alongside weight loss at my worst times which were, at that point, yet to come as symptoms of Crohn's Disease.

I frequently displayed tiredness, had stomach aches & also irritability, alongside picking various different illnesses up more frequently when at nursery and school.

Other signs

Before I became diagnosed with Crohn's at aged 7, there were other symptoms which I had which we would later, after many tests and hospital visits, find out were because of it. 

These (as well as the above) included:

- Bruising easily

- Feeling sick

- 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

- Feeling like I couldn't empty my bowels properly

- Constipation which could suddenly switch to diarrhoea

- Night sweats

- Difficulty sleeping

Leading up to my diagnosis

Because of the severity of my symptoms, I missed a lot of school & pretty much missed the first year of Junior school down to having investigations & hospital treatment. 

Mainly because I was very young, it took a considerable amount of time (a good few years) to get my diagnosis. At the time, I was the third youngest in the UK to be diagnosed and was seen under two hospitals. My main hospital (which I still go to now) saw me in Children's Clinic & I also went to Leeds St James' Hospital once or twice a year for a second opinion. 

A lot of the hospital memories I hold as a child I think I've tried to block out. This was a very dark time in my life & I've definitely developed Post Traumatic Stress Disorder (even to this day, I'm nearly 30 now) due to the trauma I underwent in hospital. 

There were nurses who understood and doctors, but unfortunately there were quite a few who made my experiences even worse and traumatic. I remember being held down to a hospital bed on one occasion whilst I screamed in agony and tried to refuse an enema before a colonoscopy. Going to the toilet was absolute agony down to the narrowing and inflammation I was experiencing in my intestine & near my rectum.

My diagnosis to my second diagnosis

I was diagnosed with Crohn's of the small bowel (small intestine) at 7 years old and had many medications which never really seemed to help in the long term. 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).

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.

The two years before my surgery

Leading up to the decision being made that I needed surgery, I had steroids again as well as Azathioprine (an immunosuppressant), finally moving onto an infusion treatment Infliximab (also known as Remicade). 

I stopped Azathioprine because my liver started to become affected by it recurrently.

I usually had Infliximab every 6 - 8 weeks. Infliximab is a type of TNF (tumor necrosis factor) blocker, usually used to treat moderate to severe Crohn's. Initially, it was intended as a chemotherapy drug, but wasn't found to to be effective.

When I had my routine scans after being on Infliximab for a year, the results showed that my disease was now more severe and unfortunately the treatment hadn't worked.

It was after this that it was decided for me to have surgery. 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 & live.

August 2011

Stacey Stoma was created on 9th August 2011, when I was 19. I am now nearly 30 and regularly share both the ups and downs of stoma life over on my instagram.

Until next time,