Parent & Baby Series- Daddy with a Baggy

My name’s James and I’ve been an ostomate for just over 4 months.

I was diagnosed with ulcerative colitis in 2017, which came as a shock as I’d never had any health issues before, and it was as if it happened overnight. Luckily it was caught early, but that’s about the only luck I had!

The following 4 years were a blur, I was in and out of hospital and trying several different medications, none of which were successful. I had periods when the doctors decided to put me on steroids and these helped me finally get my UC under control. However, they came with terrible side effects, I became almost hyper/manic and then as soon as I tapered down from them my UC would flare almost instantly. I was in a lose, lose situation. During those years I missed out on many family moments with my wife and children, fun activities like daytrips, football matches, birthday parties, that I’d always been present at before.

I felt guilty that I was unable to join in. I know that sounds bizarre as it wasn’t a choice, it was out of my control, but I felt that I was letting my family down and I worried about the impact on my boys due to them seeing me constantly ill. People say that children are stronger than we realise but how could they not be affected by their dad missing out on so much time and fun with them? My wife tried to keep everything as normal as possible for them but the cost of this illness on them was always on my mind.

During one particular hospital stay for IV steroids, it became apparent that my ulcerative colitis was no longer responding to medication, not even the steroids. I was therefore advised to have emergency surgery. My first thought was oh my goodness how will my two young boys take this news about their Daddy having a bag attached to his body. The immediate thought after was how it would impact on day-to-day activities with them as I’ve always been a ‘hands-on’ Dad. It turns out that I needn’t had worried so much about their reaction as I’d forgotten a key point whilst I was worrying – young boys think poo is hilarious! The conversation was an easy one and the questions that followed were ‘does it stink’, ‘can I see it’, ‘can I see your poo’, ‘can you still do a fart?!’ Finding humour in the subject was a positive way to deal with it for us.

In the coming months, once I was starting to recover, and the boys could see that Daddy was no longer going to be housebound and running to the toilet every couple of minutes due to the constant flares. They truly realised that the bag was an amazing thing that had given them their dad back after a difficult few years.

I know that everyone’s journey and situation is different but if I were to try to give a few ‘top tips’ then they would be:

• Make your own peace with the idea of stoma surgery before giving too much information to your children.

• When you do tell them, remember humour may help – particularly if your kids are young!

• Try to focus on what the bag has given you, and your family, rather than what’s been taken away from you.

• Be open with your children, don’t be ashamed or make it a taboo subject. Ask them if they have any questions about it. Focus on the positives.

• Don’t forget that children learn from us, this is a great opportunity to demonstrate to your children how resilient the human body is and how we are all different from one another. It may well teach them to understand about disabilities, both visible and invisible.

• Don’t try to rush into being a ‘super-parent’ straightaway, recovery takes time, and you need to allow yourself that time. Try to be open with your children about the recovery process. You can even try to set some goals with them. Simple goals like walking through the garden and back with your kids can show them that your situation is just temporary, and it will get better.

• Depending on your individual circumstances, consider staying with another close family member if needed for just a couple of days when you leave hospital. Whilst you will want to go home more than anything, it can be difficult to come straight home from major surgery into a busy household with the kids wanting to climb all over you!

• Most of all, embrace your new life, embrace being able to parent again, and cherish those all-important family moments.