I gave birth to my second baby boy at home on a cold January morning in 2006. The midwives were present, my mom delivered him and all was perfect. Except it wasn’t. During the pregnancy my ulcerative colitis had got progressively worse, so I was on steroids throughout which triggered steroid induced gestational diabetes. I was treated with daily insulin injections. It was a trying time, but I was to be rewarded with the greatest gift of all, so I hung in there and moved through my pregnancy one day at a time. The birth was beautiful, everything I wanted it to be thanks to my amazing team of health professionals.
I bathed in that glow of new motherhood, for about an hour. Then I had to dash to the bathroom and restart the frequent urgent trips — the disease was in free fall. Therein started a hellish time, with me being too sick to look after my baby and toddler; relying on family and friends whilst I was in and out of hospital for frequent urgent treatments. By the time my son was two, I had exhausted all treatments (including intravenous biologic chemotherapies) and was told it was time for a total colectomy. I was 32-years-old and devastated. The thought of living with an ileostomy, even temporarily for six weeks, was too much for me to bear. I couldn’t imagine coping with it, and thought I’d feel ugly and horrible for the rest of my life. However, doctors pointed out that it was just a matter of time before my condition became an emergency case, so I chose to get organized and have the surgery.
My ostomy surgery was complicated and dramatic. I think it is for a lot of people, it’s a huge surgery and we usually go into it having been seriously ill; undernourished and fatigued. It took me a long time to recover. Yet, I surprisingly took to my ostomy much like I took to changing nappies. It wasn’t my favorite thing to do, and was often unpleasantly messy, but I just got on with it. Living with an ostomy is not always simple. It takes time to work out the best appliances, to manage a routine, and to get used to the many variables that can affect its comfort. It also takes time to psychologically adjust to this new state of being.
The first trip to a public restroom to change my ileostomy bag with two kids in tow was an eye-opening experience. I already had a radar key to allow me to use the disabled toilets and that made a huge difference, but managing the supplies, trying not to stain my clothes, and appeasing two little boys is somewhat challenging. One great thing was that we were still in nappy bag phase, so I was able to keep my ostomy supplies and all of my kids needs together. Little did people know that I was going through more disposable nappy bags and baby wipes than they were! Once I figured out the best ostomy system to use, I got into a rhythm with changing it and actually felt quite affectionate about it. After all, it saved my life.
Prior to the surgery I had thought an ostomy would negatively affect my parenting. Yet, I had rarely been an active parent to my two boys in the previous years, so having renewed vitality and health with an ostomy meant that I finally became the mum I’d been desperate to be. I ended up living with my ileostomy for six months. Something that previously seemed abhorrent to me became so normal that I even contemplated making it permanent. In the end, I had a J-pouch procedure, but the prospect of a future permanent ileostomy does not scare me — it’s so much better than living with severe UC.
As for parenting, it turns out that however I look or feel, and whatever strange medical equipment I have to live with, my kids love me just as I am in any given moment. Having ostomy surgery definitely marked the beginning of a much more fun mummy, who is now able to spend significantly less time in the bathroom, and more time playing.