If anyone has asked me this last year or even a couple of months ago, I would have struggled to answer.
Was I definable by my relationship? My role as a friend, a daughter, a sister, a cousin? My likes and dislikes?
My invisible illness, even?
I don’t hide the fact that I have Crohn’s Disease, a form of Inflammatory Bowel Disease (IBD) and it has defined my life – both physically and mentally – for the five years since I was diagnosed. For the majority of that time I’ve been able to work and enjoy my life because medication was keeping my disease under control. But this year I needed to have surgery to remove a portion of my small bowel. This went to plan in May but three months later I needed to have more surgery; this time to remove my colon and give me an ileostomy. This was major abdominal surgery and would change my digestive system for life.
An ileostomy is where the small bowel is diverted through an opening in the abdomen. The opening is known as a stoma. A special bag is placed over the stoma to collect waste products that usually pass through the colon, rectum and anus. You wouldn’t necessarily know I had this unless I told you.
Getting used to this new chapter with my health makes me question what I am doing with my life and who I am.
A coping mechanism for dealing with my IBD was always to mock my disease and try to find the funny within my, at times, horrible situation. I connected with other IBD patients and shared stories with them; trying to find some new ‘normal’ in my life. I knew I was different but that made me all the more awesome for it. I’ve also met some great and inspirational people, most of whom I can now call friends. What came from this was that I now defined who I was by what I had. Sadly, despite the strong medications, my disease was still progressing. The medical profession and my own IBD team promoted surgery as a last resort; so when I finally got to that stage, I was scared. I couldn’t believe how soon this had come around. I was also angry; I was hoping for more years without needing to be cut open – cutting means that reoccurrence was higher, complications and lowered quality of life – why wasn’t my consultant doing more to keep me intact? This anger didn’t go away easily. Not until I was living in pain every day over the summer did they finally found out I now had a very diseased colon; it needed removing, and sooner rather than later.
I committed to my subtotal colectomy almost as soon as it was proposed to me.
Considering how I felt about surgery, this doesn’t make sense. But you know what else doesn’t make sense? Living in pain every day, being symptomatic and unable to sleep and eat for weeks on end. I was assured that this surgery would fix me. Removing my colon and giving me a permanent ileostomy seemed drastic but I just wanted to get better; I was willing to try anything. That was the pain talking. That surgery was the turning point for me. I was mentally prepared for it, the hospital physically prepared me for it – giving me a PICC line to feed me with TPN – how well I coped with it, how well I lived life with it, was all up to me.
For the most part I love my ileostomy. It’s weird to love a stoma but I truly do. I’m oddly fascinated with it and taking care of it is just a new challenge to me. I’ve never felt so well with Crohn’s in all my years with it. Yes, I am still having to have Crohn’s medication to keep my disease under control and maybe it’ll get me into remission, and yes I’ve had to modify my diet and keeping hydrated but again; that is just a new challenge. All the ostomates out there who live with ileostomies and colectomies – yes, there is a difference! – show me that life with a stoma isn’t all doom and gloom. I am not ashamed to have one, its saved me from months of prolonged agony!
Yes, it’s not the ‘normal’ set up for a digestive system but it works. I am still here, I am happy and I am no longer define myself as “Louise with the Crohn’s Disease”.
My disease has shaped my life, but my ileostomy has saved me from being overwhelmed by it. My ileostomy is giving me back my life, free of pain and anxiety. The array of activities I can still do with an ileostomy gives me hope that I can finally take back control of my life, even the ambitions and goals that Crohn’s Disease did try and take away from me. From swimming to horse riding, traveling without the fear of needing the loo, holding down a job, relocating, leading a healthy and fun life; things which I feared I wouldn’t be able to do before. Most importantly, I’m not scared to try new things now. I actively want to pursue things that give me life experience instead of being the person who sits on the side lines, scared to try, fearing people’s judgments and comments.
I am proud to have a bag of poo attached to my abdomen. It’s the best move I ever made. It’s made the old me see who I can be.
It’s made me, ME.
NB: Originally posted on Safe Space UK here.