Parenting with a stoma

A little back story as a parent with an ostomy: a parent’s guilt!

Having been chronically ill for the last nearly 20 years, amassing a huge amount of surgery and endless hospital appointments is completely normal and part of my everyday life.

However, when one has a child, it puts a completely different angle on this and I am forever suffering with a guilt complex, in the fact I put my little girl through part of what I have to experience as an ostomate with frequent hospital admissions.

How do you explain being away from your child? How do you explain that mummy or daddy will be slightly different with their anatomy? How do you explain that you may not be as active as you normally are for a short while?

So, roll back nine years and my first stoma was formed a few days after having Maisie. The C-section unfortunately perforated my bowel and left me fighting for life and a three-day old baby girl without a mother. Fortunately for me, I lived to tell the tale and due to my mother’s rather persistent and ‘mother bear’ nature, once I was well enough, Maisie lived in hospital with me for eight weeks. At the time, my family rallied round and whilst I was at my worst, they all took it in turns to pass the baby and care for her until I was well enough and able to manage this myself.

In 2012, I had my bowel re-sected and spent two weeks in hospital. This was just after Maisie’s third birthday. Honestly at that age, I couldn’t explain to her what mummy was having done, so I stuck with ‘mummy has a poorly belly’ and she still says this at nearly nine-years-old.

Time for the brutally honest part – Maisie didn’t speak to me for nearly a month from being admitted and then coming home. This little girl took it as a massive insult that mummy was away, and I cried a lot. Maisie soon warmed up though and things got back to normal.

Next round of surgery

My last surgery was planned like a military parade. I had six months to sort out child care, who Maisie was going to stay with and I made her school aware so should any issues arise, they knew how to help Maisie or how to comfort her should she be on the emotional side.

Explaining this surgery to her was difficult for me. We weren’t too sure if I would make it off of the theatre table, let alone lead the life I am now living. Maisie had not long turned seven, so explaining in simple terms comes easy as a parent, but doesn’t make it easy telling them that their life is going to be slightly topsy-turvy for a month or so.

How to explain to your child/children

The best advice is to be honest. Children can smell a lie a mile off and, like you, they need time to process what is about to happen. I am very lucky in the fact that I have a supportive partner and that my parents are absolutely fantastic, as they pick up the mantle when I am admitted, or having yet more surgery carried out.

I explained to Maisie that mummy was not going to have a ‘number two’ the normal route and that my insides were going to come through my tummy and I would have a bag attached to that to catch the poo, which she found highly amusing at the time. She understands that mummy had it done to make me better, which means she gets more play time with me and I can be slightly more normal, if that is even a thing?

Maisie, as always, was impeccably behaved for Nanny and Grandad. The only thing I struggle with, is when she comes to see me in hospital. She gets scared and rather timid with the machines and the state I may be in at the time. I always put a smile on my face and ask how she is, how school is and what the plans are for when I get home. Then, I try to make a break for it and either Ben or my mother make sure I make it back to the ward. My Dad and brother, however, like to whisper to me and give options for hospital break outs without Mumsie over-hearing.

Now

Life as a parent and an ostomate is pretty plain sailing for me and for Maisie. I do all the normal parent things such as day trips, general larking about and just being a mother. She had me teaching her how to do cartwheels and handstands the other week and with a half full ostomy pouch – it was rather interesting to say the least.

The other thing I have discovered, is that as much as I feel guilty for putting her through what had to be done, it has made her a very loving and sympathetic child. She cares deeply, and she knows when I am having a bad day. She also knows how to push my buttons, but that’s children all over.

My guilt fades away when she comes home with school reports saying she’s excelling academically and her teachers telling me she is a lovely-natured, caring little girl who is friendly with most of her class. I also get told by her father that even with everything I have going on, he’s extremely proud of the way I have managed to raise Maisie on my own and the young adult she is becoming. It has taken a long time for me to realise that me being ill or having ostomy, does not impact the way I parent and if anything, it has made me a stronger and more capable parent.

Many thanks for reading

Louise X

*Disclaimer*

This blog post is intended to give advice to ostomates. The information given is based on Louise’s personal experience and should not be taken as clinical advice. Each ostomates needs are unique to them and their stoma care routine. Please consult with your Stoma Care Nurse before undertaking any changes to your stoma care routine.