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Hirschsprungs disease

Did you know that GP’s in the UK get less than 2 hours training on eating disorders in their medical degree (sourced here)? It’s simply inconceivable. The topic of eating disorders was something I never had to give much thought about until I had my son, yet now it consumes most of my thoughts. Eating disorders awareness week is a chance to share our stories and connect with like minded people.

It's that time again when my baby boy (not so much baby anymore) has his birthday and this year he turns 6! He has come so far, and exceeds all expectations with a big personality to match. With that light at the end of the covid tunnel looking brighter and brighter each day, many children have been having birthday parties where possible.

As I write this blog I am home from an unexpected hospital stay with my little boy. He got dehydrated quickly and required IV fluids. Being a patient with open access due to this needs it took one phone call and only a few hours before he had a cannula in and fluids given. Now I understand that it may take a lot longer for some, and we have ourselves waited many hours for such things, but it never fails to amazing me how they can take a poorly child and so quickly make it seem brighter and hopeful that they will be ok.

October was a very special time for me as I entered my first 10K race in Cardiff, South Wales. Whatever possessed me to do it you ask? How many of you who are reading this with a chronic illness have found they can’t be as active as they once were? For me it was like a light switch was flicked and I couldn’t do anything without being in pain anymore. Its debilitating, demoralising and can lead you down a dark path mentally with the mental health benefits you loose over night. My health journey has been quite the fair ground ride.

It feels like it was only yesterday that my Instagram feed was glittered with beautiful photos of ostomates across the world, showing what World Ostomy Day means to them. For most of us who use the platform to document their journey living with an ostomy, its a daily occurrence, yet what is it about World Ostomy Day that makes it that much more special?

Recycling is something a lot of us do on autopilot with it being part of everyday life. Not one to show my age, but I can remember during my childhood having no recycling boxes outside the house and never seeing adverts or media circulated regarding the climate crisis. Thankfully one of the advantages of our children’s generation, is that they are made much more aware and have greater understanding from a young age, giving them the tools and education to actively be a part of tackling it. 

I’m back again guys following a lovely holiday with my family! We have always stayed in the UK since we had our baby ostomate now 5 years old, so current circumstances haven’t made any difference to us choosing to visit the beautiful Exmouth in Devon. Despite a few wet days at the start, parts of the UK entered a heatwave with temperatures entering late 20s/early 30s. 

I started blogging about having a little one with a stoma in 2016. I used Instagram as a platform to share my story in the hope of helping in the way many had for me by sharing the highs and the lows of having a baby with Hirschsprungs Disease. The bowel disease which affects 1 in 5000 babies a year in the UK, is caused by the nerve cells in the intestines needed to move stool along into the rectum for toileting (known as ganglion cells) not being present. This causes the body unable to remove its own waste, with the tummy starting to distend and very little to no poo being passed.   Surgery is essential with bowel washouts...

As soon as your child expresses an interest in going to the same club as their best mate, the search begins to secure a taster session, work out how it will fit around your schedule, and if it is affordable. If your child doesn’t have an additional learning need or special need have you ever stopped to consider the risks in them doing it anyway?

I had the phone call a few weeks in advance for my ileostomy surgery last Summer during lockdown. We had to isolate as a family for 10 days and I was in no means mentally prepared. With Covid I didn’t expect to have the surgery anytime soon giving us all quite the shock! A few weeks is much more than some people get with many stomas formed as the result of an emergency surgery where patients wake up to find one without even know what a stoma is.