Surprise Stoma, a bad 24 months I cant shake off

I'm Paul, Since my diagnosis with Crohn’s at 17 years old, I have strived to live my life as fully as possible. Unfortunately, this has become exponentially more difficult with the events of the last two years. I need to raise money for emergency surgery, that's why I am here.

I am also the co-founder of a brand-new charity music festival, Phest. (www.phest.co.uk) This extraordinary event is bringing the community together to raise funds for Crohn’s & Colitis.

This is my story:

March: 
My brother-in-law sadly passed away due to complications arising from Crohn's. This was a major turning point in my life, and it affects me to this day. There began to be a nagging thought at the back of my mind: Could this be what happens to me too?

As the year unfolded, things definitely did not improve.

April:

I work in event management, and my work started to disappear due to COVID-19. As the true scale of the pandemic became apparent, clients began to cancel event after event.

May:

My work into 2021 had been canceled. At that time, it felt like the events industry was fully destroyed.

June: The post-traumatic stress from my brother-in-law’s passing and the stress caused by the pandemic started to take their toll on my mind and body. I had a severe Crohn’s flare-up, which put me in bed for days.

August: Another Crohn’s flare-up resulted in me being rushed into hospital with sepsis. While in hospital I collapsed onto a concrete floor (head injury in the picture.) This led to brain scans on top of all the others (and no they didn’t find one!). 

November: Planned keyhole surgery to remove the affected part of the bowel leading to emergency stoma surgery. They had to open me up, and I woke up with an ileostomy that I definitely did not expect.

I had lost a lot of blood, so I was fighting for my life.

This was far from ideal during a pandemic. I was not able to have any visitors, and my wife was not sure what was happening, panicking about what state I might be in.

On my return home, I could see the shock on the faces of my wife and two daughters. I was shocked myself when I caught a glimpse of myself in the mirror. Unfortunately, I had an infection from the surgery, so after six days at home, I was back in hospital.

The next 5 days were incredibly difficult. First, I didn’t get a full night’s sleep because, due to the fluids I needed, I had to drain my stoma bag every 20 mins.

I was exhausted and emotional. During the night, I would have flashbacks about what had happened back in March. I felt that I was right on the edge of what anyone can endure and in need of serious help. When I was discharged, my wife was incredible at caring for me, carrying out research and making necessary phone calls.

December:

I was confined to a wheelchair for three weeks before I began to try walking and talking again. At this point, I was constantly in pain and heavily reliant on painkillers. My new ileostomy was causing me embarrassment, and it was taking its toll on my mental health and my family around me. I hadn’t slept a full night since early November.

Over the coming months, I experienced all sorts of reactions from people. From full-on support and help from my friends and colleagues to pure ignorance from people out and about. I have been confronted for parking in disabled spots in the early days when it was very clear I was really struggling, and on nights out, I’ve had people knocking aggressively on toilet doors to hurry me up so they could take drugs! When I try to explain, this has being met with laughter which was both infuriating and upsetting.

Toilets themselves have given me numerous problems. Some don’t have working hand basins, there are no locks on the doors, and there’s no adequate clean space to change my stoma. I’ve often reconsidered going to any bar or venue for fear of something like this happening.

Now:

Over 18 months have gone by, my ileostomy is still very painful, and I still struggle to get a full night’s sleep. Due to the odd shape of the ileostomy, any appliance seems to fail. It rips in the street, when picking my kids up, during work, when out for a meal, when in the super market, pretty much any given scenario.

I was promised a reversal of my ileostomy before the 18-month cut-off period (there is strong evidence to suggest your bowel does not work as well once 18 months have passed with an ileostomy). My surgery was supposed to occur in mid-January 2022, but they have not scheduled me. I contact the team almost weekly, and all I have is a wall of silence as to if and when it will take place.

Any help you could provide would be massively appreciated. I need a reversal URGENTLY to be able to return to work to provide for my family, live a normal life and continue to manage the festival we have been planning.

It was clear from my journey that there are serious issues with the healthcare system, people’s attitudes, stoma appliances, financial support, and the cleanliness of public spaces to name but a few. This seems quite an invisible problem.

I began to think about how we could make a difference. I decided we can do this by raising awareness of the needs of people living with Crohn’s, Colitis, and stomas.

We can help by:

Creating an open forum for patients to discuss their concerns and problems.

Raising money for vital research.

Raising awareness so people consider Crohns and Colitis in their own fundraising efforts.

I am more determined than ever to improve the lives of young people starting out on the same Journey. Get me repaired and I can help others. Thank you!