Sophie's Story


My Name is Sophie

I’m a 23 year old ostomate. I currently live with my wonderfully supportive boyfriend, Josh, and my cat, Mork. For the last couple of years (apart from a few months off with my illness/surgery) I’ve been working in my challenging, yet amazing, job as a Software Engineer.

I have an ileostomy! My stoma is a ‘he’ and his name is Squishy. I like to think the name is sufficiently self-explanatory, haha. I have my ileostomy because of Ulcerative Colitis, which comes under the umbrella term Inflammatory Bowel Disease, or IBD. In the summer of 2015, just before I graduated from University, I went to the doctor after experiencing some frightening bleeding and mucus when I went to the toilet. Anyone who has been through this disease knows that fear, and the sensation that someone has dropped a lead weight into your stomach, at the sight of it. I went through the process of getting my first colonoscopy, but was told I had ‘self limiting inflammation’ in my rectum, and that I could use suppositories to easily control it. IBD was not mentioned at this time, sadly, and I wish it had been, as I feel I would have been better prepared for what was to come.

For a full year, I controlled the bleeding with the medication I was given. Unfortunately on the 7th of July 2016, things took an extremely sharp downturn. One day at work, I went to get my lunch and suddenly felt an incredibly strong wave of nausea every time I tried to take a mouthful. I was unable to eat, and when I returned to my desk I began to experience crippling stomach cramps, forcing me to to rush to the toilet. This was the beginning of my first, and last, flare of UC.

I was admitted to hospital by my doctor after explaining that I was visiting the toilet 10-15 times per day with bleeding. I had a flexible sigmoidoscopy that revealed 20cm of inflammation in my large intestine. The consultant happily handed me 40mg of daily Prednisolone, and told me that this medication would be the answer to all my worries. Unfortunately, this was not the case. After 2 weeks of taking this high dose of steroids, my bleeding had gotten worse, and I’d lost so much weight and was so anaemic that I was almost unable to walk as my worried Dad took me to hospital again. I was immediately re-admitted and put on intravenous steroids. Much like the oral version, this also had no effect on my disease. It seemed I was resistant to steroids entirely.

2 CT scans, 4 x-rays, and a second flexi-sig later, as a last ditch attempt to control the disease, I was approved to try the biologic Infliximab.

I had my first dose under the watchful eye of a wonderful nurse at 10pm, and things started to look up. My toilet frequency decreased, and I was sent home with a second loading dose appointment in 2 weeks. During those 2 weeks, I sadly declined in health again, until I returned to the hospital for a third time. The second dose of Infliximab was given to me, but 5 minutes into the infusion, I had a severe allergic reaction to it. The infusion was stopped, and the surgeon who would end up creating my ileostomy came in to talk to me, as I’d reached the end of my treatment options. I was having surgery in 3 days as an urgent, semi-emergency case, to avoid my disintegrating bowel from perforating and causing sepsis.

This was on the 19th of August 2016. I had lost weight from 55kg to 41kg, and had two blood transfusions. I was unable to walk further than to the toilet and back, and I was on TPN (food into my veins) because I hadn’t eaten a full meal since I’d arrived in hospital in July.

I was terrified. Why me? At 22 years old?! Surgery had always been the very last resort – as far as I was concerned at the time, it was life ending. I imagined I would smell, be unable to wear anything but pyjamas, that my boyfriend would leave me and I would be disgusted with myself for the rest of my life. I remember lying in bed, hand on my stomach where the stoma nurse had marked where my stoma would be sited, crying.

However, my wonderful parents, my boyfriend, and all of my amazing colleagues and friends assured me otherwise with messages of love and support. I joined a couple of Ostomy Facebook groups, and felt less alone already. The night before surgery, I decided I was going to name my stoma Squishy, and love him, and myself, no matter what. The next morning I went into surgery with my incredible mum beside me right until I went under the anaesthetic.

When I woke up from a seven hour long surgery, I was acutely aware of being very hot, and very thirsty! I wasn’t actually in that much pain, as I had requested strong relief and a Fentanyl pain pump button was pressed into my hand, which I gratefully mashed several times! I slowly came around and was taken into intensive care initially, then moved to high dependency. Everyone was excited, because Squishy had started working only a couple of hours after surgery! Finally, some good news! The next day, I took a photo of myself doing thumbs up so everyone knew it had gone well.

The first time I saw Squishy was when the stoma nurse came to change my bag for the first time. She removed the bag, and a swell of emotions rushed to the surface. “Hello Squishy!” I laughed, nervously. As it turned out, Squishy and I got along rather famously. I recovered for 11 days in hospital before I had the strength to go and recover for another 6 weeks at my parents’ house. I had a largely problem-free recovery period, and I received the best care from my caring parents, who are both absolutely incredible. My appetite returned with great gusto – I remember my first Indian takeaway – it was absolute HEAVEN to enjoy a decent korma and naan bread again! Squishy handled everything like a pro.

8 weeks after surgery, I did a phased return to work. My colleagues & job welcomed me back with love, support, and understanding, which I think I’m incredibly lucky to have. It’s now August 2017, and I’ve done things with my ostomy I never thought I’d do again, or ever be able to do. Myself and my lovely, caring, supportive boyfriend have bought our first house, I’ve just accepted an amazing new permanent role in the same company I was working for during my illness, I’m working full time, I adopted my cat Mork from the RSPCA, I make digital art, and took up a brand new hobby – bouldering, which I can do thanks to Comfizz’ support wear keeping Squishy all nice, snug, and hernia-free as I pull myself up the climbing wall! I’m especially proud of myself for ‘adult-ing’ despite everything I’ve been through, and trying something totally ‘out of the box’ that I probably wouldn’t have even considered before my illness!

My ileostomy and surgery saved my life. I won’t lie, I still suffer with fatigue, eczema, anaemia, and some other issues due to my continuing battle with my immune system. I have to go back for another surgery in 5 years or less, as the surgeon couldn’t remove my rectum during the first go around, and I still have to deal with the remaining inflammation in the portion they left behind. I am pretty sick of hospitals too! Despite all of that, though, I think that having my UC and ileostomy has really opened my eyes to what is important in life. My priorities have shifted, my perspective changed. I throw myself into enjoying my life now. I speak openly about Squishy to my friends, colleagues, and family – bolstered by their astounding support and help. I eat all the food I fancy, with only a few exceptions to avoid a blockage, I don’t smell bad at all, and still wear clothes that I love and feel good in.

’m living again, and it feels GREAT! All the things I was terrified about for having stoma never came true. With the right support, even with an ostomy you can be amazing, and do amazing things.

With love and hugs to all my new ostomate friends on their own inspiring journeys,

Sophie 🙂