“I was diagnosed with Ulcerative Colitis when I was 16 years old. I had no idea what this was. Ulcerative Colitis is one of the two forms of inflammatory bowel diseases, alongside Crohn’s disease. It affects the lower end of the digestive system, including the large bowel and rectum. Ulcers can form along the lining of the bowel and cause severe pain, bleeding, and mucous. There is no cure for ulcerative colitis, and the hope is it can be controlled with medication. The symptoms of ulcerative colitis for me was severe diarrhea, mucous, and blood in my stools, lack of control of my bowels, stomach ache and bloatedness, fatigue, and joint pain.
This was a lot of information for a 16-year-old to process and also very scary and lonely. Back when I was 16, social media wasn’t a big thing so I didn’t have many places to turn to other than reading through the leaflets I was given in hospital. Over the years, I was put on numerous different medications, including steroids. The side effects of these medications were awful and left me feeling down and alone. Ulcerative colitis is an invisible disease, as no one can see the pain you are going through inside. Sitting on the toilet in absolute agony for hours at a time was so upsetting. No one truly knew what I was going through other than myself.
The hope for ulcerative colitis sufferers is medication will put you into remission. Unfortunately, over 13 years, I was in remission for about 4 of those scattered through the years. Through these years, I, of course, had to try and live life to the best I could. It was really difficult, but one thing I did enjoy doing was cheerleading, and I was lucky enough to compete at the world championships in the USA in April 2018. This had always been a life goal of mine and I was so proud of myself for achieving it. There were some moments in the USA where I nearly had accidents as we were driving and in the middle of nowhere and suddenly I needed the toilet, but luckily we just made it in time to a petrol station. I was just so happy to be out in the USA living out one of my dreams.
The medications I was on would work for a short time but then my body would reject it. After trying around five different oral medications, I was moved onto injections bi-weekly. Unfortunately, my body didn’t absorb this medication well. We trialed weekly but this still had no effect. I was then moved onto having IV medications, which is where I had to go to the hospital every 6 weeks and have my medication via a drip for a few hours. This medication was such a harsh drug that was initially used as a chemotherapy drug. These drugs worked for a short period of time, but my body grew antibodies against it, meaning it no longer worked, so I swapped to a different kind of IV medication. My consultant had started to discuss the option of needing to have surgery, due to the fact the medications were not working and I was coming to the end of any form of medication treatment. This surgery would leave me with a stoma bag. This is something I had always said I would rather die than have a bag, so I refused to discuss it with my consultant in detail.
Unfortunately, in April 2019, I was severely unwell and was admitted to the hospital. I had begun vomiting and had severe diarrhea. I lost around 11 pounds of weight in 3 days. After days of tests, the consultant came to see me and told me I needed to have emergency surgery to remove my colon. They had done a camera test and it showed my colon was now toxic. It was all yellow inside and it needed removing urgently. They gave me 2 days notice of this.
I was heartbroken. I didn’t want to have surgery; I wanted to try and keep fighting. The thought of having to have a bag for me was the worst thing possible. I didn’t want people to look at me differently, and I didn’t want my partner to fall out of love with me. I felt like my whole life would end and I wouldn’t be able to do anything.
I went into surgery at 9 a.m. on April 10, 2019. I came out of surgery and was in so much pain that they had to give me two doses of ketamine to get my pain under control, I have never felt pain like it. The next few days were a blur of strong pain relief and recovery. I was so weak and wasn’t prepared for how weak I would be. I am usually such an outgoing person that to feel so useless and weak really upset me. I couldn’t even stand up to clean my teeth or shower myself. I came out of surgery with a catheter, an anal drain, and a stomach drain, as well as my stoma and stomach scars from the surgery. I was in a lot of discomfort. After around 4 days, my catheter and drains were all removed and this made me feel a bit better. I started slowly moving about and after 7 days, I was allowed to go home. Going home was the best thing, as I was able to recover now in comfort.
The first time I looked at my stoma bag in hospital, I cried… a lot. There was this new thing on my body with poo going into it. I didn’t know how to use it, change it, or anything to do with it. It felt so alien to me. But going home was good. I was able to take my bag off and just look at it and feel how I wanted to feel towards it. Looking at it really helped me connect to my new stoma and a new way of life. Since the surgery, I hadn’t had any of the pains I was having prior to surgery.
The recovery was hard and painful and I had to take things slowly, but fast forward 8 weeks and I could tell my new life was beginning. How did I ever say I would rather die than have a bag? I named my stoma Stella, as the nurses and the surgeon said it was a good idea to name it so it felt part of you. Stella is literally my best friend. I cannot believe what my life is like now compared to what it was like before. Pre-surgery, I had absolutely no control over my life. I would be controlled by having to find toilets urgently, needing to rush off and scared I wouldn’t make it to the toilet in time. Now, I have a life I am in control of. Stella has made me feel unreal. I am now in control and I feel stronger than ever. One of the best things is I am now on now oral medication for the first time in 13 years and to me, this is amazing. I cannot remember what ‘normal’ felt like, and after my surgery and recovery, I now live a life I know I deserve. I am able to enjoy my life now without worry. I have enjoyed numerous holidays without having to prepare our whole schedule around where the nearest toilet is.
Since my surgery, I have been taking the time out to find myself and come to terms with the change in my body. Throughout 2020, I had been thinking about how I could reach others for people similar to me to have a platform to ask questions, see people similar to them, and know things are going to be okay. In July 2020, I created an Instagram account for all things stoma and ulcerative colitis related. I cannot believe the positive response I have had. I am a very honest and open person and I feel if I had had someone similar to myself before my surgery, then I wouldn’t have been so scared or waited so long.
I have based my page around my stoma top tips, body confidence, being yourself, educating people around ulcerative colitis and stomas, and just generally and open space you can ask questions. I also was fortunate enough to be given the opportunity to model for Asda, which is a supermarket chain, and this was amazing. My aim is to get invisible disabilities into the mainstream light and show people it is okay to be different and unique. Everyone has a story and every story should be told. I have been amazed by everyone’s kindness.
Since my surgery, I have felt the most confident and body confident I have ever felt and this is all because I feel well. I would massively encourage anyone who has been feeling scared or unsure about any form of surgery to people in similar situations and ask questions. SO many people out there are there for you and you will not be alone. I have been given some amazing opportunities and I have recently done a modeling shoot for some therapeutic photography, which I thoroughly enjoyed. This truly allowed me to be myself and gain more confidence. I asked the photographer to keep the photos real. I didn’t want her to airbrush my rolls, my stretch marks, or my stoma bag. I truly believe every body is worthy and those things on our body make us unique and who we are.”
This story was submitted to Love What Matters by Sarah Smith. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more inspiring stories about living with chronic illness here:
‘Two months before college graduation, my symptoms returned. The bloat, the blood, stomach pain, and fatigue.’: Young woman diagnosed with severe Ulcerative Colitis, ‘I felt I would never get my life back, now I embrace it all’
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