My IBD story

Everyone’s story is unique… this has been mine 😁

My Crohns’s journey

I was diagnosed with Crohn’s in March 2017 38 years old. Before that, I had been a super fit fitness instructor and PT, outgoing, living life to the max happy go lucky gal with no health worries.

In November 2016, my dentist suggested I get some blood tests done because I had a few ulcers. He thought it was probably a mineral deficiency but to get checked just in case. At this time, I also had an issue at my tail end that I thought was piles.

I went to the doctor, who ran some blood tests and said I was likely someone who just got ulcers. That there was no connection between my mouth and tail end (which I thought was weird. At uni, I studied anatomy and physiology and the digestive tract, and I knew that we were talking about the start and end of the digestive tract – but I didn’t have the confidence to challenge him on it because he’s the doctor). The blood tests returned ‘normal’, and he sent me away. I felt dismissed and that I had to work this out on my own.

Over the next couple of months, things got progressively worse. I tried every kind of ulcer remedy and mouthwash if anything made things worse. By the beginning of February, the pain at my tail end was so painful I was getting shooting pains every time I went over a bump in the road or moved too quickly. I was going to the toilet often and losing weight – not ideal in my line of work. I went back to the Dr, and this time I got the manager of the practice. Within minutes of conversation, he told me he thought I had IBD. I didn’t know what it was, and when I went away and looked it up, I thought he was wrong. No one else in my family has IBD. I eat many whole foods and exercise regularly (in hindsight, too much)… but he ordered many tests. When the calprotectin returned, it was +1800 (bowel inflammatory markers) and CRP +200 (blood inflammatory markers). I was referred for an emergency colonoscopy, confirming I had severe Crohn’s colitis.

I was put on high-dose prednisolone and started on other immune-suppressing meds. I have had many severe reactions to the medications and worked through prednisolone, budesonide, infliximab, azathioprine, mercaptopurine, and adalimumab. I was then moved onto biologicals vedolizumab – which worked for a while, then stopped working, and I started having bad side effects… I am now on ustekinumab which seems to be working. Although I still have some symptoms, which might be endometriosis, I am waiting on an appointment at gynaecology (which I have been told could be 18 months on the waiting list). And I am perimenopausal… a lot is going on!

I requested to be referred to the Centre of Integrative Care at Gartnavel Hospital. After a 5-month wait on their waiting list, I have a doctor there who has been amazing, and we are working with homoeopathy medicines to manage symptoms. Integrative care looks at you holistically and uses lifestyle practices and alternative therapies to help with chronic conditions. Holistic care and alternative therapies fit my way of life and values.

IBD doesn’t just affect the bowel. Everything in your body is connected.

Symptoms I have experienced

Diarrhoea

Constipation

Ulcers in mouth, throat, colon

Loss of appetite

Weight loss (I have lost 20KG in really bad flares)

Sweets Syndrome (ulcerated lumps on the skin)

Joint pain & Swelling

Uveitis (inflammation of the middle layer of the eye)

Episcleritis (inflammation of the surface layer of the eye)

Erythema Nodosum (inflammation of the layer under the skin)

Rectal abscess

Fistula

Plantar Fasciitis

Tendonitis

Muscle pain & weakness

Chronic Fatigue

Restless Legs

Panic attacks (physiological symptoms rather than psychological)

Sound and smell sensitivity

Fever

Pain in the bowel that feels like it’s on fire

Anxiety & depression

In the flares (I have had three big flares), I would be experiencing that list simultaneously.

I am very fortunate that my partner has been exceptional; we were only together about six months when I got diagnosed – he has had to lift me to the toilet and wash and dress me at times. When I was admitted to the hospital in March 2022, I came home to him having moved our bedroom downstairs so I could be close to the toilet.

Living through this has been tough. There are people I considered friends who distanced themselves and others who stepped up and have been there for me beyond expectation.

I am very grateful that I came across the Catherine McEwan Foundation in September 2022 when they launched their mental health support. In December 2022 I had some therapy sessions with Avril, which has helped me work through the anger and frustration I felt with myself and the world at large and be in a place of acceptance (which I didn’t think was possible before working with her).

Being diagnosed with Crohn’s filled me with shame at first. Here I was, someone teaching other people how to live a healthy lifestyle and better manage their health, and then I get diagnosed with a chronic health condition. I have searched and researched; why me? What did I get wrong? Could I have prevented this? There are many things that could have contributed to my getting sick. There isn’t anything I can do about it now other than practice what I preach; prioritise my health, listen to my body, rest more, move in a way that feels good today, be present with myself, get out in nature, use my herbal remedies and get connected with people that bring me joy.

Foundation founder Derek recently visited Strathclyde University to work with some incredibly talented students on a very exciting, but top secret project (all will be revealed soon!) Special thanks to IBD Nurse Specialist, Vikki Garrick and the Legend John Paterson for lending their expertise to the day.

Starsailor frontman James Walsh is coming to Glasgow – and donating an entire gig to The Catherine McEwan Foundation!

James will play an intimate gig at 18 Candleriggs on Weds 19th of April, with all proceeds from ticket sales donated to the Foundation.

Former Scotland manager Alex McLeish is an ambassador for the charity and his son Jon is a close friend of both Derek and James. Jon also runs his own charity, United For Colitis.

The cause hit close to home because one of his bandmates has Colitis – so James offered to stage a solo show with all income going to the Foundation.

James said: “I first met Jon McLeish when Starsailor played at T In The Park and we’ve been good friends since. I remember singing Billy Joel’s New York State Of Mind at his Dad Alex’s 50th in Birmingham while he was manager at Birmingham City. They’re a great family all round.

“Obviously the more you get to know someone, the more you get to know about their life and the challenges they face like Colitis which Jon and his brother Jamie suffer from. The drummer in Starsailor, Ben Byrne, also suffers from the same condition so we’re aware of how debilitating it can be when a flare-up occurs.

“However I wasn’t aware that the effects of Crohn’s and Colitis could be quite so devastating until I heard Derek’s story about his mum Catherine. I think it’s amazing that he’s keeping her memory alive and helping others whilst dealing with his own grief.

“I think both United For Coltis and Catherine McEwan Foundation already do an incredible job of spreading the word about the great work they do. If I can help on some small way to raise awareness of this to my audience and everyone has a great night in the process then I’ll be happy.”

James is touring both with Starsailor and solo, but hadn’t planned a Glasgow date on the initial solo run – so when he talked with Jon about the Foundation, the perfect opportunity came up.

“I’ll do a few Starsailor songs, a few songs from my solo catalogue and a few covers. The shows usually start off pretty laid back and easy going and reach a crescendo at the end of the crowd is up for it.

“When I released the solo tour dates a lot of people were particularly disappointed that Glasgow wasn’t on there initially. I thought why not put that right and raise some money and awareness for a great cause in the process? I have to work like everyone but the other shows can put food on the table so to speak.

“The show will be unique. It’s the only one on the tour that’s for a charity so it’s special.

“It depends on the crowd really. If there’s more of a mix of my usual audience and supporters of the charity who maybe aren’t as familiar with all the material then I can adapt the set to have more familiar songs in. I think the occasion and everyone being there for a joint purpose will make it a unique and special occasion.”

Starsailor have their own band shows coming up too, including celebrating 20 years of ‘Silence Is Easy’ with a U.K. Tour in November including a stop off at SWG3 in Glasgow on 26th November.

James added: “I’ve got loads more solo gigs through the year too. The reaction to the new solo album ‘Coming Good’ has been great.”

Catherine McEwan Foundation’s Derek McEwan said: “We are thrilled to welcome James to our Foundation family, and the fact this has come about through Jon McLeish is no surprise as he’s been a stalwart supporter for so long.

“We can’t thank both James and Jon enough for making this happen and we hope we can raise a lot of money as well as put on an amazing event for everyone lucky enough to get a ticket.”

Tickets go on sale Weds 19th of April

This time 15 years ago I was lying in a hospital bed just after having had a flexible sigmoidoscopy which diagnosed me with ulcerative colitis.

This was after having spent three weeks dealing with severe symptoms and unsure about what was going on with my body.

I was going to the toilet 30 to 40 times a day and night, with lots of blood, mucus, urgency and stomach cramps. I’d lost 10kg and was severely dehydrated and malnourished.

The previous week I’d been turned away from A&E with no investigation saying I just had a haemorrhoid, despite explaining my symptoms and feeling that I possibly had ulcerative colitis. Very frustrated I headed home to cope with my extremely challenging symptoms.

This time I was back again and determined to get the real answers for what was going on and  treatment to get my health back.

During the sigmoidoscopy, I was given no sedation so I could see everything that was going on. Facing the big screen and seeing what the endoscopist could, it was very apparent my colon was in a really bad way, and from images I had seen online I knew I had colitis.

As I lay on the hospital bed in tears I had very mixed emotions . Relief – I knew what I was dealing with and could now be treated. Fear – what did this really mean and what would my future hold?

I had read other people’s experiences online and couldn’t help focusing on the negatives; it would limit my life, I wouldn’t be able to exercise as much, there would be many ups and downs, and I might need surgery.

My healthcare team were quite concerned about the severity of the inflammation in my colon and feared it might perforate – they had surgeons on standby in case I needed emergency surgery.  Fortunately, over the next few days, IV steroids managed to get the inflammation under control and my colon was saved.

Despite spending nine days in hospital while I recovered, I was given very little information about my diagnosis, what it would mean and what I could do to help myself learn to live with this new life long condition. I remember one conversation with a doctor. I asked if I’d be able to exercise with IBD, as I’d read online that it might be more difficult. He agreed, saying it might well be more challenging now I had a health condition. I’d alway been very active and movement was a big part of my life, so these words hit me hard.

One afternoon in the hospital I decided to test this by running up the stairs. But I was exhausted after a couple of flights, and had to nap to recover. Maybe he was right, this was going to be hard (of course, I hadn’t factored in that I’d lost 10kg, spent several nights in hospital and was very run down!).

Those words held me back for quite a few years, this belief that my body wasn’t as able as before and it was going to limit me. I now know that’s not the case at all. Yes, sometimes things can be hard. Yes sometimes my IBD will present challenges. But it hasn’t held me back – actually I’m fitter and more determined than I’ve ever been.

This morning, 15 years later, I ran a 5km Parkrun in 18m 47s, a time my 21 year old self would have been incredibly proud of.

I thought I’d share 15 things I’ve learned over the past 15 years. All things I wish I’d been able to sit down and tell my younger self in that hospital bed:

1. Your life will change, but it will be OK
2. There’ll be lots of ups and downs but don’t let the downs keep you there.
3. You are not alone. Even beyond IBD, there will always be someone somewhere experiencing and thinking what you are now. They understand you too.
4. Have an open mind, things you believe are true might not be, things you think are wrong might be right. Don’t be afraid to listen and try things.
5. You hold a lot inside. Talk to people, it will help more than you can imagine.
6. Healthcare is amazing and can do incredible things but you are ultimately responsible for your health. And there is so much you CAN do to improve it.
7. You will have accidents and poo your pants. It won’t feel great, but it’s no where near as awful as you thought it would be. Don’t be ashamed, it’s not your fault.
8. Carry spare clothes whenever you can – you’ll feel more prepared if the worse happens.
9. You’ll meet the most incredible people on your journey, and make lifelong friends.
10. You’ll learn so much from other people – listen to what they have to say, it will help you so much.
11. Share what you have learned, even if it feels obvious to you. You don’t know who it might help.
12. Look after your mind – it’s far more powerful and influential than you might think.
13. Get awesome at sleeping, it’s not an inconvenience, and it will have a huge impact on your health.
14. Don’t compare your symptoms, treatments and challenges with anyone else’s. No IBD journey is the same and everyone copes with things differently.
15. Everything happens for a reason – it’s life trying to tell you something. It might not make sense at the time (and be incredibly challenging), but you’ll learn from it, you’ll grow from it, and become a stronger more resilient version of you.

The Catherine McEwan Foundation are thrilled to announce that we have teamed up with the incredible Jen Rose (Creative Patient ) author of Me (and IBD) to deliver a range of patient and family focussed education information which will be shared through our social media platforms.

Jen Rose, author of Me (and IBD) said: 

As an IBD patient, and parent of a young person with IBD, creating patient-focussed, engaging, accessible and supportive information has become my passion, and working with the Catherine McEwan Foundation allows me to do this on a much bigger scale. It’s such a privilege to have been invited to join the team – I can’t wait to get started!

Foundation founder Derek McEwan said:

I am delighted that the super talented Jen Rose of Creative Patient fame has joined the Catherine McEwan Foundation family. Jen will be working on much of our patient & family focussed educational information that we deliver through social media as well as collaborating on unique projects and campaigns moving forward. Collaboration within the IBD community can only be of huge benefit to our patients and families and ultimately that is our goal, to benefit, support & educate the IBD community.

Welcome Jen! We are super excited to have you on board!

Red Hot Ball: Ibiza was one of the nominees for Special Event of the Year at The Emma’s. The Emma’s is an awards ceremony which celebrates the charity events industry.

Although we did not win it was a huge honour to be in the running with some incredible charities which included UNICEF, Cancer Research UK and Ronald McDonald House.

Congratulations to Chain of Hope who won the award for their Chain of Hope Gala

What a night, Red Hot Rock did not disappoint! The Catherine McEwan Foundation Family came out in force for an evening that was packed full of incredible entertainment, dancing and of course FUNdraising.

During the evening we were privileged to hear the stories of Abbie and Brandon, listening to what they have been through with their conditions really hammered home the desperate need for research and the provision of additional services for those living with IBD.

An incredible £100,000 was raised on the night. We are once again blown away by the generosity of our supporters. The money raised will massively help us make the lives of those living with Crohn’s and colitis better.