A Lancaster mum with suspected Crohn's describes how the In My Shoes app created by Crohn’s and Colitis UK helps people understand what she has to go through on a daily basis
A blogger who is known for her frank toilet talk due to having an inflammatory bowel disease says a new app to help others understand what she is going through has provided extra comfort for her.
Vicky Winstanley, of Lancaster, who writes The Motherhood, says she has not been able to get an official diagnosis but she has all the symptoms associated with Crohn’s disease - an illness her uncle and grandmother have had.
Her symptoms began in 2016 as she was experiencing lower abdominal pain, which was diagnosed as appendicitis. However, she was still experiencing pain after she had her appendix out.
In July 2017, she was passing blood and she made frequent visits to the hospital. Over the years, Vicky has had many different tests and procedures (four colonoscopies, three gastroscopies and numerous CT and MRI scans).
Next year, Vicky is due to have a capsule endoscopy. This ‘pill camera’ procedure involves swallowing a pill that will be able to relay imagery back to doctors to help a diagnosis.
The 38-year-old explains: “This has been going on for a number of years. It is such a long, drawn out process to get a firm diagnosis.
“Even though, since 2017, I have had more than 150 hospital visits, doctors are still scratching their heads.
“The longest I was in hospital for was 14 days. I would go home and then be back in a few hours later as my symptoms got worse.
“I have now changed from Royal Lancaster Infirmary to Royal Preston Hospital and I have to start all the tests all over again."
Fearing very few people understand what she goes through, she is grateful to the In My Shoes app, which runs through the day in the life of a Crohn’s or colitis sufferer.
She describes: “I have very frequent toilet visits - often with urgency as I have a couple of seconds notice before I need to go. I can have persistent diarrhoea six to 10 times a day and when it really flares up it can go up to more than 20 times a day.
“My body is trying to get rid of everything.
“I get fatigue, stomach pain and constant cramps. Because of the high inflammation levels, which is like a 90-year-old, I get joint pain all over and rheumatoid arthritis.
“It has changed the way I live my life. I am not able to go out much without having anxiety, as I need to have a toilet nearby and I need a change of clothes in case I have an accident.
“It is really exhausting and has a huge affect on my mental health. I try to be positive about it and have a laugh.
“I used to run Vintage Tea Room, in Galgate, but I had to give that up. So I began blogging and write about my experiences online.
“People find stories about poop funny, so I thought ‘why not make the most of it?’
“I have positive days and other days I break down, I have had dark times where I have been in bed for days, not being able to do anything.”
Vicky and her partner, Gavin Gourves, have tried the In My Shoes app and have found it useful. She says: “I really appreciate that my family would want to experience what it’s like for me on a day-to-day basis.
“Even though Gavin is aware, he doesn’t realise everything. It shows an average day and asks questions about taking medication and needing to find a bathroom in three minutes. It has mood, energy and pain scores, so he can realise how I feel. The app has helped Gavin to understand more. It makes him more aware and to know helpful things like always making sure we have toilet roll.”
Visit Vicky’s blog: www.the-motherhood.com.
There are more than 300,000 people in the UK with Crohn’s or colitis, so to help people understand, Crohn’s and Colitis UK has launched a new health app – In My Shoes.
The app allows users to spend a ‘day in the life’ of someone living with Crohn’s or colitis, and find practical ways to make their life better. Tasks and 24-hour notifications help users experience how conditions can affect every part of your body, and every aspect of your life. Tasks include ‘against the clock’ to find a bathroom and dropping what you’re doing if your pain level gets too high. The app uses a scoring system to show how well you cope with the challenges, based on pain, energy, and mood. It inspires people to find practical ways to help, such as helping to plan journeys, offering the right foods, and showing understanding if they need to cancel plans.
The app, developed by Crohn’s and Colitis UK and Takeda UK, is available to download for iOS or Android. Search In My Shoes on the App Stores.
Crohn’s and colitis awareness week runs from December 1 to 7.