Hello reader & welcome to my first blog post for the fantastic Ostique.
Firstly, I’d like to wish you a “Happy New Year” and send love & light your way for 2023.
I’m going to start off by telling you a little about me, how Ostique and myself crossed paths and giving you an insight into my Inflammatory Bowel Disease and Ostomy journey to date.
If you’d like to find out more about my journey or stay up to date, you can find me on Instagram at @ibdwarriorprincess. Have any questions or comments for Ostique or myself? Please leave us a comment at the end of this blog post!
A little about me & my story
I’m Amy & I’m 31, from East Yorkshire, UK. I am a Social Media & Marketing Specialist for an ostomy support company, after working for several years as an Accounts Assistant up to last April. I also am a freelance health blogger, and help with the finance bits in mine and my husband’s company. I am a dog Mum, love singing and take singing lessons, love vanilla lattes, clothes and you can often find me either at a gig or with a book in my hand.
I’ve had symptoms of Inflammatory Bowel Disease (IBD) for as long as I can remember, and had a diagnosis of Crohn’s Disease since aged 7. Firstly, I was diagnosed with Crohn’s Disease of the small intestine and throughout ten years up to turning 17, I tried many treatments, all of which, sadly, proved to be unsuccessful in the long run. As the treatments progressed, the more ill I became. It never felt like anything was working for me and this was, ironically, a hard pill to swallow, understandably.
Come aged 17, when I moved up to the adult clinic at hospital, I had investigations and tests and it turned out my inflammation was actually in my large intestine. This is why treatment hadn’t been working. This time, I was diagnosed again but with Crohn’s, primarily, of the colon (Crohn’s Colitis). I had steroids (again), Azathioprine (more on this here) and then finally moved on to Infliximab (Remicade) which is an infusion treatment, which I received anywhere between 4 and 6 weeks apart.
My ileostomy surgery - aged 19
By the time I reached 19 years old, it was really clear nothing was working and I felt pretty hopeless. I couldn’t eat and I actually became extremely scared of eating because of the agony it would leave me in and the endless toilet trips I would have to take.
At certain points, I remember counting over 30 times a day that I needed to rush to the toilet. It’s safe to say at this point that I had a very sore bum and I also suffered from skin tags and sores around my bum. I tried to go out and do things like Asda trips with my Mum but would often become too anxious and feel like I would pass out or not make it to the toilet in time. This was an extremely isolating feeling and one I felt I would never get over. Infliximab also gave me painful side effects with my joints and at my worst, my Mum had to lift me in and out of the bath and help me increasingly with daily tasks.
I had my permanent ileostomy surgery done in August 2011 (panproctocolectomy) and this surgery actually saved my life by a matter of hours due to severe Crohn’s. Also, surgeons found a large, benign (non-cancerous) tumour on my colon which had started to seep out into my abdominal cavity and surrounding organs. I lost a lot of blood in surgery and was told that if it had been hours later, I may not have been here to tell my story (image credit below: IBD Relief)
Ostique reached out to me in 2022 and we exchanged messages about their aims, their upcoming products and ideas about working together. What first appealed to me about Ostique was how friendly and approachable they are and take a genuine interest in my story and who I am as a person.
One thing I’ve always noticed about a lot of ostomy supplies and accessories is how medical-looking and less modern some can look. I love that Ostique are on a mission to change this in developing innovative ostomy supplies such as bag covers! I have come to, thankfully, be body-confident since 2011, when I had my ileostomy formed, but I still find some products to be very non-complimentary and the lack of choice can often be very disheartening. Again, this is something Ostique is keen to address. Also, they understand that both mental and physical health are just as important.
I have had the pleasure of talking to Olivia a lot and we recently recorded a podcast episode which you can listen to here. Ostique’s lovely description of this episode is:
“To say that Amy is inspiring would be an understatement. In this conversation, she was honest and open about all things living with IBD, including what it is like to be diagnosed so early in life, the ways in which stoma surgery changed her life, the impacts that her surgery has had on her gynaecological health, fertility, how to stay positive and help others - and so much more. We hope you enjoy listening to this episode as much as we enjoyed recording it. Love, Ostique x”
To catch up on all of Ostique’s “Chatting Sh*t” podcast so far, head here.
Blogging for Ostique
I am really looking forward to producing some blogs which you will be able to find on Ostique’s Blog on a multitude of topics in Ostomy Life. I will also be posting links to these on my Instagram, so please follow me to keep up to date.
Is there a specific question you’d like me to answer or a certain topic you’d like me to address? Leave a comment below.
My next blog post will be all about potential ways to cope with the bad days with an ostomy and will go live on Blue Monday (16th January).