The devastating impact a painful and incurable condition has on sufferers is being brought vividly to light by an app launched in the borough.
Courageous teenage Crohn’s disease sufferer Ellie Pugh got assistant headteacher at her school Lee Peachey to try out In My Shoes, which gives people an insight into the life of someone with an inflammatory bowel disease.
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For 24 hours Mr Peachey, from St Mary’s Catholic High School, Astley, received a stream of notifications telling him to take medicine, find a toilet urgently or stop what he was doing just as if he were a Crohn’s sufferer with debilitating stomach cramps.
In one particularly alarming episode he even drove off from a petrol station without paying as the energy depletion and constant stress had reduced him to such a frazzled state.
The app has been launched by charity Crohn’s and Colitis UK, for whom Ellie is an ambassador, and Mr Peachey described her resilience in the face of what she battles every day as “amazing”.
The often-misunderstood conditions affect the gut and immune system and the app uses messages to give users an insight into sufferers’ lives, from fatigue and pain which requires managing to having to rush to the toilet and juggle work and a social life.
Ellie, from Leigh, was diagnosed with Severe Crohn’s Disease aged just seven and has spent months in Alder Hey Hospital this year after becoming severely unwell and then having to undergo major bowel surgery.
Mr Peachey has worked closely with Ellie during her time at school but he admitted the app was an eye-opening experience.
He said: “I knew Crohn’s or colitis was significant but I had no understanding of how your typical day is completely altered by having it.
“You can’t plan your day. I’ve now got a greater understanding of the pressure Ellie is under. It was enlightening.
“I picked a very busy school day and it completely collapsed around me.
“I was woken up four or five times during the night with notifications saying I had to get to the toilet, take medication or stay up for an extra period of time due to stomach cramps.
“I couldn’t have any carbs because it told me I would have a reaction, so breakfast went out of the window, and then it told me I could either take medication or leave for school or work. I had an early meeting so left the medication. This was absolutely not the right decision.
“As I was driving my normal commute down the M6 I got a notification saying I had three minutes to find a toilet. I searched for one, got to a McDonald’s just in time and was told I had to wait for 15 minutes.
“I got caught in all the traffic and was 20 minutes late for my first meeting.
“It progressively got worse. I had to leave my normal duties in the dinner queue and ask another member of staff to step in for me.
“Ellie was checking up on me throughout the day and I had four members of staff, who didn’t know what I was doing, ask if I was alright because I looked really stressed. My energy was just zapped.
“The most concerning thing, though, was that I went to my local petrol station and just drove off without paying. I went back in at the weekend and they said if they hadn’t known me I would probably have a criminal conviction for stealing fuel. My mind just wasn’t in the right place.
“What I didn’t understand was the unpredictability of it. The app would tell me I had three minutes to find a toilet or there would be an accident. That would make me frightened to get on a bus, because you would almost be trapped on it.
“Ellie puts in an outstanding effort every single day. At times she has to put her head on her desk because the pain is so bad, but she shows extreme resilience and determination for her education. She is amazing because she doesn’t moan and she embraces the struggle.
“We have several students here with these conditions and they just soldier on.”
Ellie was first diagnosed with Crohn’s after what was thought to be a stomach bug did not go away after a fortnight.
She collapsed and was eventually transferred to Alder Hey where a camera investigation of her digestive tract revealed she had a severe form of the disease.
She has struggled with her health throughout 2019, spending three months recovering from having part of her bowel removed.
She finally came home in September and the following month returned to St Mary’s, which she had not been able to attend all year.
She has spent long periods of her life having to be fed by a tube and has experienced painful flare-ups which doctors have struggled to control.
Ellie is also keen to raise money and awareness of the condition, having been a community ambassador for Crohn’s and Colitis UK for two years.
She saw the app advertised by the charity and decided she wanted to get someone she knew to take part.
Ellie said: “There’s the old saying of walk a mile in my shoes to see what you are going through. I thouoght it would be nice for someone who sees me on a daily basis to see what I go through. Sometimes Mr Peachey sees me stressed and flustered.
“Part of me wanted it to be tough for him but I didn’t want it to be too tough because he’s really nice and has been very supportive of me.
“I want people to see the other side of it. Not many people see you doubled over in agony. The app shows you the urgency and the fatigue. I think it’s brilliant.
“At the moment living with Crohn’s is like almost like a daily battle. It’s the stomach pain, the constant nausea, the vomiting. Trying to schedule appointments and keep a relatively normal life is impossible.
“I have to take a lot of medication and factor that in and I have a reduced school timetable because I’m just too unwell to be there full time.
“Mr Peachey said the app told him to turn down plans with friends in the evening and that was really hard, but I haven’t been able to do anything socially with friends and you have this constant guilty feeling that you’re letting people down. It’s really disheartening.”
Ellie’s proud mum Donna said: “She’s been through a lot and it has been a tough year. She ended up in critical care at one point with pneumonia and pulmonary edema.
“It was great the school gave permission for Mr Peachey to use the app. It gives a better understanding of what someone like Ellie experiences.
“This year we’re hoping that even though she still has a tube for medication she can eat at Christmas, because for the past two years she’s been tube fed.”
Crohn’s and Colitis UK hopes the app will improve knowledge of the conditions, which affect more than 300,000 people across the UK.
The charity wants to break down the stigma around the diseases, reduce the isolation of sufferers and encourage people to think how they could help friends, family members and colleagues living with Crohn’s and colitis.
To try out the app or find out more, search for In My Shoes in any app store.