Ok yes this a long post but you might find it interesting. It is my very brief (believe it or not) story on who I am, my conditions, my ostomy bears and how I ended up here. I’ve got nothing to hide and happy to tell my story.
At 17.5yrs old in 1992, I was diagnosed with Crohn’s aggressive disease that had already invaded my entire gastrointestinal tract from mouth to rectum. Depression set in at about 19 years old pretty bad in 1993/4. So I’ve been on antidepressants ever since. No issues with that. Depression is difficult and emotionally exhausting on top of the chronic pain I was living with, but this was all part of my NEW normal. I’ve never been one to give up or into any health issues even though sometimes I didn’t win, I tried.
At 24 years old in 1998, after no medications worked (which there weren’t many of them like now) only made me worse and I was told I had to get a permanent ileostomy or I would die. After the surgery I tried and I think I somewhat successfully lived a NEW normal life. I worked hard, studied hard, travelled, had boyfriends, had a social life, owned my own unit and considered myself normal, which I was. My bag never really stopped me from doing what I wanted to do. Yes I made serious sacrifices to do and live the life I was. A lot of compromises but still was living. Yes I had flare ups, 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.
I have always been very open about having Crohn’s disease as when I was diagnosed nearly 28 years ago it was a disease no one knew about so I had to educate people if I expected people to try to understand what my body was doing to itself. Then 8 years later when the bag came along I certainly wasn’t ok with it. It was something old people had. How was I going to be attractive, confident (which I pretty much always had been) and productive with poop hanging off my belly. But I conquered that and accepted my bag wholeheartedly and then started educating and flashing it at people who wanted to see it. It was my way of feeling like nothing was wrong.
If I hid it I was hiding who I was and how I became the person I am. So loud and proud.
The journey wasn’t easy by any means but I knew I had to roll with the punches and get back up or stay down and be defined by my conditions and my bag….NO WAY. I’ve tried to be positive and strong and have a ‘nothing is going to stop me’ attitude which most of the time worked but when it didn’t it wasn’t pretty. I worked and studied and did most normal things, just got on with it.
Until, at 39 years old in 2013, I was diagnosed with immune rheumatoid arthritis which progressed extremely quickly and within 6 months I was selling my unit, quitting work and moving in with my family because I literally couldn’t function. It was in every joint, every movement, every breath, everything hurt and I just couldn’t function anymore on my own. So from end of 2013 to March 2018 I was literally completely bed ridden, addicted to narcotics, morphine and was not living but existing now. The pain was unbearable and nothing was helping. Then in 2016, I was also diagnosed with minor fibromyalgia. With everything else this didn’t seem to bother me, pain is pain.
In August of 2017, I started on another new biological drug to try and get some relief but it took 8 months for the drug to start showing some minor improvements. I was happy with any little win I could get small or large. I was starting to think maybe just maybe I won’t be bed ridden for the rest of my life.
So in March last year I needed my third major surgery, a medical tummy tuck (very different to a cosmetic one let me tell you), two hernia repairs and a slight resighting of my ileostomy so four major surgeries in one really. Leading up to this surgery I told my pain specialist I’m done, get me off all the meds and let’s see what happens, I’m in chronic pain on all the drugs so enough let’s see what happens if I detox off everything except my new biologic drug that was starting to help. So that’s what we did. Surgery was successful and recovery was crap but I got there. The best thing was I was not off my face on hard core drugs and wasn’t asleep for 20 of 24 hours.
As time passed about 6 months I was doing pretty good, recovery was coming to an end and I was thinking what the hell am I going to do now. I can’t sit all day everyday doing nothing. That’s when Ostomy Support Bears was born 28th January 2019.
It gave me a purpose again and thought a small initiative (initially only supposed to be in Perth, Australia) would be great for me.
Now look where we are! One year in, 1200+ bears all over the world putting smiles on faces, raising awareness and reducing the stigma attached to having a bag for children and adults. Educating people and getting it out there it’s not so bad having a bag.
Yes I still have all my health problems they aren’t going away but neither am I. I was also in the last few weeks diagnosed with osteoarthritis in many parts of my body which wasn’t exactly what you want to hear at only 45 years old. But what was I going to do, give up now….no no no I don’t think so. So we have just added it to my very impressive medical resume.
I’m so proud of what I’ve achieved and accomplished in the past 28 years but this initiative is my greatest achievement, besides staying alive for the past 28 years. I’m doing something so important in so many ways it’s given me a purpose again.
It’s giving people hope that having a bag isn’t the end of your life, it’s just a bag…..who cares.
Nothing to be ashamed of nothing to be embarrassed about and these little bears are just continuing to do good all over the world. It’s a win-win for everyone. How can you beat that?
Just to finish up this journey I’ve been on for more than half my life and the journey ahead is looking a little brighter one bear at a time.
If you have any questions at all please ask. I’m an open book and happy to answer anything at all personal questions, bear questions, Crohn’s, depression, fibromyalgia, ileostomy or life questions if I can answer I will do so.
Hopefully you now understand a little more about why this initiative is so extra special not just for those receiving but myself as well.
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