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Parenting with an Ostomy

Lottie Ryan is the founder of Who’s That Lady where she supports women living with chronic illness to create the life they really want despite it all. She shows women how to improve their well-being through her personal blueprint for self-care, developed over 17 years living with Ulcerative Colitis (UC) and its accompanying complications.

She’s a mum of two young sons aged 11 and 9. Over the course of her time as a parent she has undergone a total Proctocolectomy with ileo-anal anastomosis (JPouch surgery),which resulted in living with an ostomy for 6 months, and has more recently had a small bowel resection. She and her family have had to get through many difficult, life threatening times and here she tells her story about her experience living with an ostomy.

I gave birth to my second baby boy on a cold January morning, at home. 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, for which 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. My UC 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 devastated.

The thought of living with an ileostomy bag, even for the six weeks I potentially had to, 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, it was pointed out that it was just a matter of time before I was taken down to theatre as an emergency case, so I chose to get organised and have the surgery.

My 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 toe 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 all the kit, trying not to stain my clothes, whilst appeasing two little boys, is somewhat challenging.

The great thing is at that time I was still in nappy bag phase so I was able to keep all of my supplies and all of my kids supplies together. Little did people know that I was going through more nappy bags and baby wipes than they were!

For me, life with an ostomy was so very much better than living with UC. Once I’d worked out the best appliances to use I got into a rhythm with it and actually felt quite affectionate about it. It had after all, 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 the previous two years, so having renewed vitality and health with my ostomy meant that I finally became the mum I’d been desperate to be since that January day I gave birth.

I ended up living with my ostomy for six months. Something that previously seemed abhorrent to me became so normal that I contemplated making it permanent. In the end I had my JPouch hooked up, but the prospect of a future permanent ileostomy does not scare me – living with an ostomy is so much better than living with serious Ulcerative Colitis. As for parenting, it turns out that however I look or feel, and whatever strange appliances I have to live with, my kids love me just as I am in any given moment. Yet my ostomy 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.

Date: 22nd April 2015  
Author: Lottie Ryan

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