Grin and bear it: finding confidence and purpose with an ileostomy
Thursday, April 15, 2021
Kelly Moss tells how her ileostomy helped her reclaim a normal life, and how, after a difficult diagnosis, she renewed her sense of purpose, one bear at a time
My name is Kelly, and I’ve had nearly 30 years of ups and downs with my health. Getting an ileostomy gave me renewed confidence and control over my life. More recently, after an especially difficult diagnosis, making Ostomy Support Bears has helped me send smiles all around the world—and brought back my own smile.
A tough start
Back in 1992, I was diagnosed with a particularly aggressive case of Crohn’s disease, which had already invaded my entire gastrointestinal tract, from mouth to rectum.
At 17 years old, this wasn’t easy to deal with. By the time I was 19, I was feeling pretty low about it all, and I was diagnosed with depression. The emotional exhaustion that comes with depression is especially difficult on top of the chronic pain I was living with Crohn’s disease. However, I’ve never been one to give in and let my health issues get the better of me without a fight. Even though sometimes I didn’t win, I always tried. I sought help, and I was given the necessary support, including antidepressants, which allowed me to adjust to my new normal.
Back then, Crohn’s disease wasn’t something many people were aware of. I was always very open about having the condition, and I made an effort to educate people. I had to do this if I was ever to expect people to being able to understand what my body was doing to itself. I didn’t expect people to understand, because they couldn’t unless they had the disease, so education was the only way for them to empathise with my situation.
By the time I was 24, it was clear that none of the available medications were working—if anything, they only made me feel worse. Back in 1998, there weren’t anywhere near as many options as there are now. So, I was told I had to get a permanent ileostomy or I would die. I definitely didn’t take that news too well, telling my doctor that I’d rather be dead.
Rolling with the punches
After 8 years of bowel inflammation, I swapped it for a stoma. I wasn’t exactly okay with it at first. I thought that a stoma was something that old people had. I wondered how I was going to stay confident, attractive and productive with a bag of poop hanging from my belly.
However, I was able to conquer those anxieties. No way was I going to stay down and be defined by my conditions and my bag. I knew I had to get back up and roll with the punches, even though the journey wasn’t going to be by any means easy. I tried to build a strong, positive, nothing’s-going-to-stop-me attitude. Most of the time, this worked, although sometimes it didn’t, and that wasn’t pretty.
I came to accept my stoma wholeheartedly. I didn’t want to hide the person I was, and so I started telling people about my ostomy and showing it to them if they were interested. Not only was being loud and proud my way of feeling like nothing was wrong with me, it was also a great way to educate people.
This attitude allowed me to try to live a new, normal life after surgery, and, looking back, I think I was mostly successful. I worked hard, studied hard and travelled. I had a social life, boyfriends and my own unit. Of course, a stoma and Crohn’s disease do require some serious sacrifices, and I had to make lot of compromises to keep on going. I had flare-ups, with good days, bad days and shocking days, but I also had fantastic days. It was about learning what my limits were and listening to my body. Overall, my stoma never really stopped me from doing what I wanted to, and, crucially, I was able to recognise myself as being perfectly normal.
Bedbound and down
I continued studying and working as normal up to 2013, when I ran into another life-changing diagnosis. At 39 years old, I was diagnosed with immune rheumatoid arthritis. This progressed extremely quickly, and soon every joint, every movement and every breath became painful. I just couldn’t function anymore on my own. Within 6 months, I had to sell my unit, quit work and move in with my family.
The pain was unbearable, and nothing seemed to help. I was completely bedridden and became addicted to narcotics and morphine. For years, this was how I lived—or, rather, existed. In 2016, I was also diagnosed with minor fibromyalgia, a condition that causes tiredness and pain all over the body. With everything else, this didn’t seem to bother me; pain was pain.
In August 2017, I was started on another new biological drug in an attempt to provide some relief for the arthritis, as the other biologics I had tried only helped my Crohn’s, and not my arthritis. Nothing much happened for the first 8 months, but then I started showing some minor improvements. I was happy with any little win I could get—large or small. I was starting to think that maybe, just maybe, I wouldn’t have to spend the rest of my life in bed.
In 2018, I was scheduled for my third major surgery, to take place in March. This surgery was to be four surgeries in one massive surgery. It involved two hernia repairs, a slight resighting of my ileostomy and a medical tummy tuck—which is very different to a cosmetic one, let me tell you.
In the lead up to this surgery, I told my pain specialist that I was done, and I asked to be taken off all my meds. Even on all the drugs I was in chronic pain, so I wanted to see what would happen if I tried to detox from everything except this new biologic drug that was starting to help. So that’s what we did, and the surgery was successful.
Recovery was unpleasant, but I got there. The best things were not being off my face on hardcore drugs and not spending 20 hours a day sleeping. By the time 6 months had passed, I was doing pretty well, and recovery was coming to an end.
Some of the Ostomy Support Bears come with their own custom-made outfits
By the time 2019 came round, I had been wondering what on earth I was going to do with myself, as I didn’t want to spend every day sitting around doing nothing. Severe illness can take away our sense of purpose, and I wanted to find a way to reclaim that for myself, as well as to help others in a similar situation.
By the end of January, I had started a small initiative to provide Ostomy Support Bears for people going for stoma surgery in Perth, Australia. It was a way to raise awareness, reduce the stigma around having a stoma and prove that it is nothing to be embarrassed about. I set up a fundraiser page to pay for the materials and postage, and we started making and sending out the bears.
I found that the Ostomy Support Bears made a massive difference, giving the owner a sense of acceptance and comfort. Of course, the bears are especially valuable for younger ostomates. My own experience of Crohn’s disease is proof of how much young people facing a serious medical condition can benefit from comfort and support. However, the bears are popular with adults, too. I had the idea of making them when I was given an ostomy bear at the tender age of 42. It was so damn cute; I couldn’t help but fall in love with it.
To my delight, things really took off. Within a year, there were five of us making the Ostomy Support Bears, and we’d sent more than 1200 of them all around the world. We are so happy to have put smiles on so many faces, and we hope to continue as long as we can. We’re doing something so important for others, and it’s certainly given me a purpose again.
Karin (left) and Annette (right) have joined Kely in making their own Ostomy Support Bears
To the future
I’m so proud of what I’ve accomplished. The Ostomy Support Bears have been my greatest achievement over the past 29 years of medical drama, besides staying alive through all of it.
I still have all my health problems; they aren’t going away, but neither am I. At only 46 years old, I added osteoarthritis to my already very impressive medical resume. However, I wasn’t going to give up. I’ve been on this journey for more than half my life, and the journey ahead is looking a little brighter—one bear at a time.
It does help to have a good attitude. This isn’t always easy, but, even when life is a bit of a pain, I definitely try to keep a positive outlook.
Read more about Kelly and her Ostomy Support Bears:
Get in touch
To request an Ostomy Support Bear or to chat with Kelly about having a stoma, any of her diagnoses (Crohn’s disease, depression, fibromyalgia, arthritis) or just life in general, get in touch:
Kelly Moss lives in Australia and runs the Ostomy Support Bears initiative