My Story : Steven McCollum and my battle with a Chronic Illness

Why am I cycling 200 kilometres from Dundonald to Dunfanaghy instead of driving? Why am I going to put myself through the ten hours of pain and discomfort of the saddle to help raise money for the gastroenterology unit in the Ulster Hospital?

On 23rd October 2017 as I was being wheeled away to theatre on the hospital bed from the three women in my life, my wife, my mother and mother in law, not knowing if I would see their faces again, the words of Psalm 23 came to mind, “The LORD is my shepherd, I shall not be in want”. As I was pushed through the narrow corridors of the Ulster Hospital I knew my shepherd was leading me and guiding me.

For over eighteen months I was battling a stomach problem, at first not knowing what it was, but as time went on and after numerous blood tests and too many colonoscopies to count, I was diagnosed with Ulcerative Colitis in May 2017. Ulcerative Colitis is a chronic illness that had drained away much joy and happiness in my life. Between March and November 2017 I spent forty four days as an inpatient in the Ulster Hospital, never mind all the day appointments that I had in between.

Although I cannot pin point a start date or the cause of the illness, symptoms began to develop over time. Extreme diarrhoea, abdominal pain and cramping, weight loss and fatigue. At the beginning of 2015 I started to experience symptoms of not being well, so I went to the doctor to get investigations and tests done, but nothing showed up. For 2 years I was able to hide my sickness and persevere through the pain and discomfort without many people knowing apart from my wife Hannah, but things started to go downhill quite quickly at the start of 2017.

The day before my 29th birthday, I headed up to the A&E at the Ulster Hospital to be seen regarding a football injury I got from the weekend before. It had started with a pain in my ankle but then spread up my leg. I lost over a stone in a week, lost my appetite, had extreme fatigue, a really low mood and had no motivation to do anything. If you have ever been at A&E on a Saturday afternoon, you will appreciate how noisy and chaotic it can be, but that day, it didn’t affect me. I was so drained of energy and I lay down and went to sleep on the waiting rooms chairs. I was soon admitted and tests revealed I had 4 clots in my lower leg, clots which were later discovered to be due to severe dehydration caused by the relentless diarrhoea. It wasn’t long after this that I was diagnosed as having an auto-immune disease known as Ulcerative Colitis.

If you have experienced a tummy upset, food poisoning, or the need to rush to a toilet, you will understand a bit of what colitis is. Wherever I went I needed to know where the nearest toilet was, because I wouldn’t know when I would need it. For days upon days, I wouldn’t feel safe enough to leave my own house. I would need the toilet somewhere between 10-20 times a day, sometimes more. For three months, I didn’t have one good night’s sleep, up every hour to go to the toilet, this was draining physically and mentally. With colitis the urgency to go the toilet was unbearable, it came on me so quickly I would need to be at a toilet within a few minutes, sometimes seconds. This along with extreme fatigue made simple daily routine difficult and I ended up having to stop doing the things I enjoyed.

Flare ups could happen at any time or any place, they didn’t discriminate. When I was having an MRI test, I needed to stop the test twice to jump off the machine and go to the toilet.

The joy of driving became difficult. I never knew how a car journey would go, a short 5-minute trip in the car could result in having to pull over. Hannah ended up driving everywhere, because if I needed the toilet on route, I could jump out quickly.

Queues and traffic lights became a source of great anxiety and stress. If the light turned red the stress levels shot up and panic set in as it left me unsure if I would make it to the nearest toilet. On one occasion, Hannah took me to her grandparents for lunch, a 10 minute drive away. A few minutes into the journey the pain started but we were stuck behind a car. There was a queue of traffic behind us so we couldn’t pull in. We phoned her granny to ask her to open the front door so that when we arrived I could go straight in and wouldn’t have to ring the doorbell and wait for it to be opened. Hannah stopped right outside the front door so I could run in. When I came back from the toilet, Hannah was in tears from the stress of those few minutes, from the pressure of having to get me there before it was too late. This illness affected more than just me.

We had booked a holiday for September 2017 however as we started to think about what travelling would involve, the long queues for check-in, for security, for passport control, queues which I couldn’t leave and return to, or how I would cope in an aeroplane with only 4 toilets or on the transfer to the hotel where there were no toilets and potentially a language barrier, we decided to cancel our holiday as the reality of travelling with colitis would be more stressful and would defeat the purpose a holiday.

At the beginning of October, only 5 months after receiving the diagnosis of colitis, I had a meeting with my consultant. She advised that after numerous failed attempts to control my colitis through medical treatment, my body was getting sicker and weaker and that surgery was my only option.

On the morning of the 23rd October as I woke from the little sleep I got, the words of Psalm 118 came to suddenly to mind, “This is the day that the LORD has made, let us rejoice and be glad in it”. As I faced surgery that day, I was given a reassurance that this was God’s will for my life. As I had prayed many a night, I prayed that God would grant me a miracle and heal me from my sickness, but that night, I still had the same symptoms, the same lack of rest but God taught me in that moment as I woke that what was going to happen that day, God had foreplaned and I was to rejoice and be glad in it.

The surgery required the removal of my large intestine which was full of ulcers as there was a fear that it could rupture. It brought changes physically with a stoma which has been hard to adjust to and deal with. I have tried to hide myself and cover myself, trying to be as normal as possible. Having this illness has presented and continues to present so many challenges I never thought I would have to face.

Although this is a small insight into life with a chronic illness, I hope you have a greater understanding of what Ulcerative colitis is and how it affected me. Let me thank everyone who has been a real support to me, especially my wife, who through everything was by my side and my constant through everything.

With all this in mind, I wanted to give something back to the unit who cared for me. My consultant, Dr Addley, was amazing, it felt like she had genuine concern for me, not sugar coating anything and was a real help to Hannah through my sickness. Being in a hospital ward as an inpatient can be long, lonely and tiresome. I want to be able to help other people that are/will be in a similar situation to me, so on the 31st August 2019, I will be cycling 200km to Donegal, to raise money for the gastro unit, and hope the money will be of great help to the staff and the patients now and in the future.

Let me finish with a verse that meant so much to me in my sickness. After a long, sleepless night of pain and discomfort, I would read this verse and knew I would been given the strength each morning to face another day “The steadfast love of the LORD never ceases, his mercies never come to an end, they are new every morning, great is your faithfulness.”