Holding my chin up with my guts out
Thursday, September 24, 2020
Sonja Nye recalls how she has kept a positive attitude through her journey from ulcerative colitis to a permanent stoma
A few months after I got married in 2003, I received a late and unexpected wedding present: I was diagnosed with ulcerative colitis. As far as this disease goes, I was comparatively fortunate, in that I only needed to rush the toilet every 4 days or so, and the inflammation was generally confined to my rectum.
Still, I needed to take immunosuppressive medication (azathioprine) to keep the symptoms under control. That kept me going until 2010, when I had a scare with malignant melanoma. The medication I was on may have been a contributing factor, so I stopped using it and switched to mesalamine suppositories and steroid foam to try keep the inflammation down.
The suppositories seemed to work for quite a while. However, about 3 years after I started taking them, it all went very wrong in a matter of a few weeks. The day before my 44th birthday, I visited the hospital for what I thought was going to be a quick look with a camera before being sent on my way with a few steroids to take. This was not the case. I was taken straight in and put on intravenous steroids. I spent a week being searched inside out with cameras and pumped full of so many steroids that I started looking like the Stay Puft Marshmallow Man from Ghostbusters. The doctors tried biologic treatments and plenty of painkillers, but the inflammation wouldn’t go away.
Sonja has three cats
I was eventually told that I would have to have stoma surgery, or I wouldn’t be around for much longer. This was all rather alarming, and, the next day, on 19 March 2016, I went in for emergency surgery. After the operation, I had a couple of issues, including my bowel going to sleep. I ended up spending around a month in hospital in total, but I managed to remain positive, feeling sure that there were other people going through far worse things. For a start, I was probably going to have my stoma reversed and my bowel reconnected.
Over the next year, I got on with my temporary stoma just fine. However, at the end of this, the surgeons told me that they couldn’t reconnect me. Within weeks, I went for an even more traumatic operation. Not only did, once again, my bowel go to sleep on me, but my epidural injection also ended up giving me an MRSA infection in my spine. The doctors had never seen a case like it before, which was certainly one way to be made to feel special. Fortunately, they caught it quickly, and I was given a room all to myself, which was a welcome upside. In the end, I was only in hospital for 2 weeks before I went home.
Sonja’s top tips for staying positive
• Do what make you happy
|• Find things that make you laugh every day|
|• Try not to feel embarrassed about anything|
|• Remember that no one in this world is perfect|
Sunny side up
I’ve certainly racked up plenty of diagnoses in my time, the most recent being fibromyalgia. Hey ho, another to add to the list! Through all this, I’ve stayed a happy and positive person (most of the time, at least). I love my surgical scars, because they feel like wounds I’ve earned in battle and are something to be proud of. Still, I have yet to learn to love my entire body (my thighs, for example...).
I am especially happy with my stoma, as it has allowed me to get out and travel the world. I’m a happily married mum to a 30-year-old daughter and three crazy cats, and my stoma has given me many chances to visit my daughter where she lives in the USA. I’m able to work full-time in a job I love; I enjoy going swimming; and I eat out a lot, because I love, love my food—of all different kinds.
I have never hidden the fact that I have a pouch. In fact, a good pat down at the airport doesn’t bother me. My husband and friends were all quick to accept it and embrace me, and I am happy to let if form the basis of a number of affectionate, if rather rude, nicknames.
It’s been a long journey, but Sonja is happy with her personalised plumbing system
People with a stoma know that life can present plenty of challenges. However, it is up to us to decide what we make of it. For example, I have not thought of my ostomy as a problem to hold me back, but as a personalised plumbing system made just for me.
I’ve always been determined to be as happy as possible, and I feel I’ve had a good go at it. I encourage everyone else in a position like mine to stay safe and keep smiling.
Sonja Nye lives and works in Dorset in the UK with her husband and three cats