5 things I’ve lost because of my ostomy
I’ve lost a lot because of my ostomy, thankfully 95% of it being things I was never so ready to lose when I had my surgery in 2011.
An appendix, large intestine, rectum & anus
In order to save my life, get rid of the benign tumour which nearly killed me & severe Crohn’s Disease within my large intestine (colon), surgeons took away these from inside my body.
They then brought the end of my small intestine out onto my stomach & sewed it back on itself to form a stoma (ileostomy). For those of you reading who haven’t heard of an ileostomy before, my poop is now fairly liquid & leaves my body via this into my ostomy bag. My ostomy is permanent and my bumhole was taken away and where it had been was sewn up to leave me with a “barbie bum”.
My poop is more liquid because I do not have my large intestine (colon) anymore which is responsible for absorbing water out of poop & turning it into more solid poop.
Being in agony daily
My brother and I in the days leading up to my surgery in 2011
I find it really hard, near impossible in fact, to remember a time where pain didn’t dictate my life before surgery in 2011, especially in my teenage years. I didn’t get to experience many things as a child & teenager because of pain & many other symptoms of Inflammatory Bowel Disease (IBD).
Even on treatments such as Infliximab (Remicade), I developed horrible side effects such as debilitating joint pains & severe shivers & chills. It is important to remember that everyone’s experiences of any medication or treatment are different and no two cases are the same.
I still get pain, but in different ways, less regularly & 90% of the time, I can usually go about my daily life without a lot of pain. The main symptom I struggle with with my Bowel Disease these days is fatigue & I also get iron-deficiency anaemia quite often.
My consuming fear of food & drink
I was petrified of eating & drinking most of the time before my surgery in 2011. Even the smell or sight of food would be enough to make me double over in agony and/or need to rush to the toilet. This is part of why I lost so much weight & struggled to put any back on, let alone keep weight.
Now, I enjoy my food & drink & I can actually maintain my weight, which feels amazing. Being able to get to a point in my recovery, several months or so after my operation, where I could begin to develop a healthy relationship with food felt absolutely magical & something I honestly thought I’d get to experience.
My “best friend” – the toilet
We really were inseparable!
I don’t miss the days where my every plan was interrupted by a hot date with the toilet. Even if I did manage to leave the house, I knew where every public toilet was if needed & always carried a change of clothes with me, especially underwear. I remember even getting pins & needles in my bum and legs from being sat on the toilet so long some days.
I’ve lost count of the amount of times I’ve crossed my legs tightly & squeezed my bum cheeks together trying to stop myself from pooping on the spot away from home. The toilet is more just an occasional, quick visit in my life now, most days. I’d say I empty my bag 4-5 times a day most days which fits in with when I need to go for a wee anyway.
Feeling like a prisoner in my own body
Having an ostomy isn’t all rainbows & sunshine but it’s given me back my life & it saved my life. It’s largely given me control over my life & my choices & it’s enabled me to find out who I am. Yes, I can’t choose when I poop as I’m incontinent which is why I have to wear a bag 24/7 but the control this gives me over being able to go about my daily life is incredible compared to the place I was in for years before my surgery.
It’s also given me the passion to help others, raise awareness & educate others. It also led me to my career in the ostomy healthcare & fashion sector. It’s enabled me to be loud & proud about being the owner of a permanent ostomy & also to give other ostomates a voice where they feel maybe they’re not ready to speak aloud or to others about theirs.
An ostomy isn’t just a leisurely walk in the park for me but it’s a walk in the park I can actually do & most days enjoy because of it. Things do get to me & I do have my bad days, but on these days I am gentle to myself & surround myself with love around me & lean on the amazing community.