‘What have I done to deserve this?’ I’d wake up hoping the drugs and alcohol had killed me in my sleep. The pain was unbearable’: Man with Crohn’s disease celebrates 8 months sober

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Trigger Warning: This story contains mention of drug and alcohol abuse and suicidal thoughts that may be triggering to some.

“I was diagnosed at the age of 15 with Crohn’s disease. I did not know what it was at the time. Neither I nor my family had heard of the disease before— no one we knew had it, and social media was only just taking off, so there were not any pages to search for. It was not a straightforward diagnosis, as my doctor said it was just a bit of stomach pain to start with and it would eventually go away. Then, after a few months, he said it was a stomach ulcer, but I started to lose so much weight and the pain was unbearable. He sent me to see a professor at the Coventry University Hospital in the children’s department, who straight away diagnosed me with Crohn’s disease but to get clarification, sent me to Leicester’s Children’s Hospital for a colonoscopy. I started a course of steroids (prednisolone) and it seemed to work and get rid of the inflammation. This became the drug of choice for years to follow in order to get my flare-ups under control.

Courtesy of Liam G.

At the age of 20, I had my first operation and had two feet of my small bowel removed. I had three narrow openings awfully close to each other, so once my waste passed through this part of my bowel, I’d be in excruciating pain. My bowel specialists said the only option was to have an operation and have this part of my bowel removed. I was an incredibly positive lad at this age, and as weird as it sounds, was looking forward to having an operation, as I’d never been put under before. But after spending 33 days in the hospital, my thoughts on wanting another operation again were very dim. It was an experience I was not expecting. I had a temporary stoma (ileostomy) to let my bowel have some rest.

I had it for a year before having it reversed, and in that year, I quite enjoyed having the bag, as I had no symptoms and life was very good. I managed to go to two festivals and carried on enjoying night life on the weekends, and all my friends and family were incredibly supportive.

Courtesy of Liam G.

After having the reversal, I started to get flare-ups again and tried numerous infusions and drugs where I’d have to inject myself. I was used to this back-and-forth treatment, until, at the age of 25, things started to get pretty tough. After being positive about my condition, it started to have a massive effect on me mentally. I had to have another operation to have the bag fitted, as this time I was suffering with cysts and fistulas around my rectum and was having these cut out every other month, so my rectum was in a pretty bad state. I was straining so much to open my bowel I’d had nothing left to poop out, and I would be straining my stomach acid out which was burning my rectum. Even once I had the operation of fitting the bag, I’d still have the sensation of needing a poo through my rectum, and would sit on the toilet and lumps of puss would just fall out and burn my rectum, leaving me in excruciating pain.

I was working at this point. I was a maintenance engineer in a factory, and it was affecting my job, as I’d spend most my time running to the toilet, and afterward, I’d have no energy at all left in me. It was then time to have my rectum and colon removed and keep the bag permanently, but the wait for my operation would take a year, and this is when I started in a downward spiral. As I was off work for such a long period, I started to drink during the daytime on my own in the pubs and sniffed cocaine. I wouldn’t tell anyone about how much it was affecting my mental health. This went on until my operation, and I’d also started smoking weed.

My first intention on smoking weed was to try and help with my depression and anxiety, but I got hooked on it and would soon be smoking it from the moment I woke up until I went to bed. It helped at the start, but then as time went on would make my anxiety a lot worse. I did this right up until my operation, but didn’t tell anyone about my drug and alcohol problem. I didn’t think it was a problem at the time.

Courtesy of Liam G.

The removal of my bowel and rectum was not a pleasant process and was not straightforward, either. I was put under for 11 hours and the pain process was something I wouldn’t wish on my worst enemy. I spent many hours of the day crying in the hospital bed, searching for how I could qualify for the treatment abroad to end my life legally. At this moment in time, I just couldn’t go through the pain any longer. I thought, ‘Surely this isn’t how the rest of my life is going to be? What have I done wrong in life to deserve this?’ I would kick visitors out during visiting hours, because I just didn’t want to speak to anyone and would have to see my mom and sister cry, listening to me say I wanted to end my life. Once the pain started to ease and I could manage my mental state a bit better, the best visit I’d look forward to was seeing my mom. My mom works nights at the hospital, so she would visit me in the morning at the end of her shift and at night before she started.

Some mornings, I’d wake up to her sitting on the end of my bed, waiting for me to wake up before she went home. Even in your mid-20s, there’s nothing more warming than a mother’s love and support. They’re moments I’ll cherish for life. Once I left the hospital and was resting at home, I started to get bad stomachaches and my stoma had stopped working. My bum became really wet, so when I put my hand down my shorts to feel it, it was soaking wet. My bowel had tangled up trying to find its new position, which caused my stoma to stop working, which then built up pressure inside me. The stitches were where my bum had been split open, and I couldn’t have it stitched back up as it could cause an infection, so every day for 6 months I had to go to the doctor’s and get my bum packed and unpacked so it would heal from the inside out.

Courtesy of Liam G.

I moved out of my mom’s and into shared house near the countryside on the opposite side of the city. I thought this would have been better for my mental state, but being alone turned me back to the drugs and alcohol. As I’d been off work for so long, the insurance company who had been paying me from work agreed to pay for private CBT for me to help me get back to work. I was so excited to start this process to get some normality back in my life again, but during this process, I was not honest about my mental state or my drug and alcohol use. I lied, and told her things I thought she wanted to hear so I could return to work. But as she was a professional counselor, she read me like a book. After 12 weeks of CBT, she said I was not mentally stable enough to return to work just yet, which absolutely destroyed me.

I was then drinking and sniffing most days in my room and constantly smoking weed. I had completely isolated myself. My head had fully gone and could not stop the drug and alcohol use. I would be gutted in the mornings when I’d wake up, hoping the drugs and alcohol would kill me in my sleep, as I was so badly depressed with the life I was living. I no longer had contact with my friends. I’d pushed everyone away because I was very jealous of their lives moving forward, seeing them buying their first houses and settling down, while I was spending every bit of money I had on destroying myself. Some family issues then occurred, which burnt my head out. I was sitting down a country lane one day, swigging wine out the bottle taking my drugs, and was planning on doing something very serious that would have sent me to prison. This wasn’t the person I was deep down, and I was at a breaking point.

Courtesy of Liam G.

I really wanted help and knew I couldn’t stop using on my own, so I looked at rehabs that I couldn’t afford, then I come across my mom’s cousin on Facebook. He was a previous drug and alcohol user but was now multiple years clean. I dropped him a Facebook message and he replied instantly, passing me his number telling me to call him. He gave me his friend’s contact for a dry house in Weston-super-Mare, who also answered straight away and was more than happy to help and told me he had a room I could have. This all happened so quickly, and I had an instant relief I was about to get the support I needed and had wanted for so long. I drove to my mom’s and told her I was leaving Coventry to get help with my drug and alcohol use, which came as a big surprise to them. No one knew how bad it been for me because I kept it a secret. The following day, I left Coventry and headed to Weston-super-Mare.

I initially thought I was just going away for a month, but during the time I spent down there, I came to the realization I was an addict. I contacted work and handed in my notice, as I believed I needed more support and understanding about addiction and moved to Weston-super-Mare permanently. I am now 8 months clean from alcohol and drugs and host a Wednesday morning NA meeting via Zoom. It has been the hardest, most wonderful experience of my life, learning about myself and how to deal with my emotions and disability without picking up alcohol or a different substance. I am doing a 12-step program, where I will learn the proper root cause of my addiction, and will learn about my behaviors. I have just completed my mentor training to help young people and families who are struggling mentally, and I hope with my past experiences I’ll be able to help, encourage, and guide them toward making and achieving goals they did not think were possible.

Courtesy of Liam G.

I also decided engineering was not for me anymore after spending 10 years in the profession. I’ve now decided to study PT and nutrition, and to help people with disabilities work toward a sport they have always wanted to do, but maybe thought was not possible. I want to spread the message and be open about my story so people do not go down the same route as I did and turn to drugs and alcohol. If you are struggling mentally, it can be a dark and lonely place, and my inbox is always open for anyone who either needs someone to talk to, advice, or to point in the right direction for more professional support. I would not change one second of the journey I’ve been on, as I believe everything in my life has happened for a reason and has put me on the path I am now on in life, and this is to help others.

I am also back in contact with all my old friends who tell me regularly how proud they are of me. The lost boy who was jealous of his friends is now super proud of every single one of them for what they have achieved so far in life, and I am so grateful for all of their support. Thank you to all old and new friends and family who have helped me and believed in me on this journey. I am so grateful and love you all.”

Courtesy of Liam G.

This story was submitted to Love What Matters by Liam G. of Weston-super-Mare, England. You can follow his journey on  Instagram and Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

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‘My boyfriend who ‘loved me’ broke up with me over the phone once I was in the hospital. My health deteriorated at lightning speed.’: Woman details journey with Crohn’s Disease, ‘You can rise above and flourish’

‘No cure? Like forever?’ I’ve been shot in a drive-by shooting, and I’d still take that pain over Crohn’s. I was so angry.’: Young woman learns to live with invisible illness, ‘It’s not the end of the world if you have to pull over, or ruin a pair of pants’

‘I looked at the poop bag and cried. ‘I’d rather die.’ I didn’t want my partner to stop loving me.’: Woman with ulcerative colitis advocates for stomas, ‘Every body is worthy’

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