I believe I have been suffering with Ulcerative Colitis since 2019, but symptoms always went away before I was properly investigated. In 2022, I had a very long flare and that led to me being sent for more tests, which resulted in me being diagnosed in January 2023. I was immediately put on Octasa, however that gave me pancreatitis and my first hospitalisation. It meant I had to move to biologics, and after 15 days in hospital I was released. I then had Infliximab infusions which failed after only 10 weeks, and this severe flare meant I spent 30 out of 33 days in hospital between May and June 2023.
I got discharged right before my birthday but lost so much weight and muscle I couldn't even get out of bed. Ulcerative Colitis has led to my body being obliterated, and my mind being pushed to limits I didn't know it could be.
Adam
Living with Ulcerative Colitis
I have been on Upadacitinib since June 2023, and it has meant I can go back to leading a normal life. However, as I have acute severe Ulcerative Colitis, I will likely have my large bowl removed and have a stoma in 2025.
My biggest challenges
The biggest challenges are the mental health side of things as well as the food side of things. I can no longer drink alcohol, eat spicy food, and have to avoid lots of healthy foods as they are high in fibre. This makes it hard to manage on a daily basis. The fact that I am seen as someone who suffered such ill health, I find it hard to shake it from my identity.
I find I am 'Adam the Ulcerative Colitis sufferer', instead of just 'Adam'. That is a hard aspect. Also, because I can flare at any moment, it makes planning holidays and trips much harder. I have to think about suffering from Ulcerative Colitis almost every minute of every day.
I don't deal with flare-ups well. Every time I have one, they get so bad I have to be hospitalised. My consultant has said my next flare will be my last. When it happens, because of the severity of my case, I will be heading to the surgical table. As for overall health, I probably am not doing as well as I can be as diet is very hard. Instead, I try and use probiotics, iron, and vitamin supplements to try and keep energy and nutrient levels up. I also have started meditation to help with the mental side of things and that really helps.
The hardest thing would probably be when I came home from my 3rd hospitalisation completely lost and defeated. I barely left my bed for six weeks afterwards, and my life felt it had been on hold for six months, with no sign of it starting again. I felt a failure. I couldn't be a parent. I couldn't be a husband and I could barely work. It was truly humbling to just be stuck in bed with no energy or ability to change your circumstances.
I just focused on one day at a time and started focusing on what I would do when I was well, that really helped.
There is the physical side and the mental side. On the physical side, during a flare, I cannot be away from a toilet. I will pass 20 times a day during a bad flare, and a lot of that being blood. I have to carry a change of clothes, and I don't dare leave the house. Then after that, there is the sheer exhaustion of losing all that blood from your body, plus not being able to replenish it with nutrients.
You essentially feel empty, and void of any drive or energy. Even the most simple thing like standing up is like climbing Everest. Getting dressed is incredibly difficult. Then, because you are so drained, you deal with the mental side. You don't have the capacity to make decisions and you cannot communicate properly. I describe it to my wife like I am on power-saving mode. The lights are on, but there is very little brain activity.
I cannot read during a flare. I cannot enjoy TV. I simply cannot do anything, as my brain just shuts off. My wife has to repeat everything to me. In the first half of 2023, I can remember events, but I cannot remember dates or periods of time. I have essentially lost half a year of my life where it is very difficult for me to recount anything other than being unwell and in hospital.
Just because you are not in flare doesn't mean you don't have to think about Ulcerative Colitis.
Support I have received
I went to an awareness coffee morning and built a support network of people with the same condition. I joined the Facebook group and absorb all the advice I can. It really is invaluable support, as information is paramount when tackling these diseases.
My wife has found Crohn’s & Colitis UK an incredibly useful resource to understand why I am the way I am when I am struggling. She understands the condition more than I do in a lot of ways as a result. She reads about how people suffer with it and can help me with techniques on how to cope.
She is an amazing person and Crohn's & Colitis UK have made it possible to be informed. For me, joining the MK and Bedford coffee mornings and the Facebook group has meant I am able to speak to people just like me and not feel alone. I always feel so much better talking to other sufferers and gain comfort in unburdening myself with people who understand what I am going through. That’s where Crohn's & Colitis UK have been so important for me and it's what inspires me to say thank you and give back.
Impacting my parenting
You feel like a failure as a parent, it is impossible not to. However, I just try and understand that I am not, and that I will overcome this. I live for the good days and when I am feeling well.
It means I have to take my good days and put extra effort with my four year old son, which means I cherish every day we get to do something together.
It allows us to enjoy things more and not take anything for granted. It means I probably make more effort when I am well, and try to make up for lost time. It inspires me to live in the moment and make wonderful experiences and memories with my son that he can cherish forever.
Why I am fundraising?
I would not be where I am if my Ulcerative Colitis was detected much earlier, and I am 100% convinced of that. Because it was allowed to go untreated for 3-4 years, I am convinced it has cost me my bowel, when the time comes to have it removed.
Crohn’s & Colitis UK do such a great job of driving for earlier diagnosis. I’m choosing to fundraise on top of giving back to the organisation who has given me so much, the other part is to enable greater awareness. If one person as a result of the money I raise gets their disease discovered faster and into treatment, then it would all be worth it.
Adam’s knowledge and enthusiasm for the sport have led him to create an incredible fantasy football league, which has already raised over £3,000 aiming to reach £5,000. Murf and Stocks 5 Yard Rush is fundraising for Crohn’s & Colitis UK (justgiving.com).
Feeling inspired?
Perhaps you’ve got a passion that you could turn into a fundraiser to raise vital funds for Crohn’s & Colitis UK. Whether it's a charity football match, crafting, hiking, or swimming, you can do it your way. Check out fundraising ideas to get started.
