I have indeterminate Crohn’s disease, a form of Inflammatory bowel disease. I was diagnosed in 2004 at just 18 years old.
May last year, I had my worst flare up imaginable. I developed a perianal abscess and a rectal vaginal fistula. I had lost 2stone in six months. I was a bag of bones. I knew something wasn’t right, my toilet trips were so often I lost count. More than 20 times a day or more if I had to guess.
I had a check up with my gastroenterologist and I was admitted on the spot. I had numerous amount of blood tests and scopes done to work out what was wrong with me. I was given an NG tube as my body wasn’t absorbing the nutrients from the food I was eating, Hence the dramatic weight loss. No matter how much I ate it went straight through me. Now I love my food but to look at me you wouldn’t think that.
Fast forward 3 weeks later, it’s now June. I’m still in hospital and no news of what is happening, until a few days later my doctor and the team came to see me and tell me they want me to see a colorectal surgeon – and that I may need a stoma bag.
My heart sank and tears ran down my face. I couldn’t believe it, I was going to have an operation and given a bag.
All that ran through my head was ‘Why?’ ‘Why me?’ I was blaming myself for all of this. I was always good at taking my medicine and watching what I ate as certain foods would upset my stomach. ‘What has happened? Why is this happening to me?’
For 11 years I avoided all of this. Not in a million years did I think I’d end up having a bag.
I was told this wasn’t any of my fault and that these things do happen. I didn’t want anyone else to know, I couldn’t tell my friends as I felt if I told them I was having one then it would make it more real. I didn’t want to admit it, but this was happening and there was no way to stop it.
It’s something none of us want to have to ever go through. It’s so scary and putting your life in a doctors hands is daunting, but it’s their job, they do this sort of thing every single day. I know it’s easier said then done not to panic, but I couldn’t help it.
I was marked for my bag by a stoma nurse a few days later and brought down for surgery the next day. I cried as I was wheeled down to theatre and gave my parents hugs and kisses.
I woke up back on the ward a few hours later. After you wake up and look down and see this thing stuck to you, your heart just sinks and you can’t stop the tears. Stomas aren’t the prettiest of things, I know. But I think if you look long enough they can look like a rosebud or a tomato.
It does help naming them too if you want, I’ve called mine Sheldon (huge Big Bang Theory fan).
I was in hospital for 10 days after surgery. But a total of 5 weeks over all.
I was so nervous when I got home, it took me a while to get used to changing my bag myself, how to dress with it and learning different things about it. Oddly enough I adapted really quickly to it. I think from the support from family and friends, and friends who had bags too, it help me learn to deal with it and I didn’t feel so alone.
I’m now 15 months post op and it’s the best thing that’s ever happened to me.
My bag has saved my life, my weight has gone back up, last year I was 7 stone and now I weigh 9 stone.
I’ve decided I want to keep my bag forever. I know there will be more surgery further down the line to make my bag permanent. But it’s what I want and I know I can do it, I’ve come this far.
For me the pros outweigh the cons, for others it may be different. I know there will be leaks along the way and sore skin, but I’d take that over soiling myself everyday to the point my backside is burning.
I’m 30 this year and after 12 years of this illness dictating my life, I’m keeping my bag for my sanity and for a better quality of life. I’m doing this for my future. I don’t want to spend the next 10 years locked in the bathroom.
I want to be able to enjoy my life with my partner, who I met 2 years ago through a support group. He also has Crohn’s disease and he’s been my rock throughout all of this.
Even though having this illness is hard, it’s the only positive thing to come out of it. I met my soulmate. We both know how each other feels and have gone through the same things.
I just want you all to know that you’re not alone in this. The idea of surgery is scary, but life isn’t over after it – mine has only just begun.
I feel more confident in myself now than I did before my operation. I’ve had bad anxiety for years and spend much of those years always looking for bathrooms. I used to avoid going out, I always soiled myself too. I don’t want to go back to all that again because I can’t cope with it anymore. My bag has helped me.
I’m a part of a few support groups on Facebook called #IBDSuperhereos which I help admin and also another called GetYourBellyOut. They are an amazing campaign that helps raise awareness about this illness and helps people like me.
It’s given me a place to talk to others going through the same thing. I no longer feel alone or ashamed of my illness. My life has changed so much for the better since having my bag.
I’m now a proud ostomate. It’s given me my life back.
Words by Lisa Cummins