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In our blog you will find all kinds of information in relation to living with an ostomy. Tips, tricks and advice as well as other osto-mates experiences can be found within our blog.

Recycling Week 2021

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. It makes me uncomfortable to think of all the packaging we would have thrown mindlessly in the bin for all those years when I see how full our recycling boxes get every week....

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Holidaying as an ostomate

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. This was my first holiday as an ostomate, but going on staycations for five years with my little one Jake meant you would think there wouldn’t be many surprises. I felt pretty organised with the only difference being myself to care for during bag leaks, hoping that Jakes stoma didn’t feel left out and...

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Practical, emotional and financial support

In an ideal world you would leave hospital with your baby (poorly or not), and the leaflets fall into your lap about support whether it be practical, emotional or financial. For me a lot of what I am about to share had to be found as I went along. Unfortunately there are disadvantages according to where you live in the UK, as to what access you have to some of them. That is why I felt it so important to keep the conversation going in the hope others will find out this information much quicker than I did.    Carers allowance  This is a benefit available where you need to qualify according to a substantial list of criteria including being...

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A mothers mental health - the baby ostomate edition

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 required...

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Navigating the world of after school activities with ALN/SEN children

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? Starting such a thing takes a gigantic leap of faith as a parent. The protective instinct for a child you have watched go through multiple health issues and maybe surgeries burns strong, and part of you may not want them to enter such activities. Despite this, deep down you know that if they are at...

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My J Pouch Story

Having a J Pouch can be the result of a bowel condition such as Colitis, Cancer or in my case Hirschsprungs Disease. If you know what a J Pouch is, it will probably be from either having one yourself or knowing someone that does. The surgery (restorative proctocolectomy), involves the removal of the entire colon and rectum. A J Pouch (ileo-anal pouch) is created from small intestine which is folded up along side itself giving it the ‘J’ shape. This creates a reservoir at the base of the ‘J’ for stool to collect. The bottom of it is attached to the edge of the anus, allowing the patient to release stool. This may need multiple surgeries, one to form the J...

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Hirschsprungs Disease Awareness

When you think of reasons for a stoma bag what comes to mind? IBD, Crohn’s or Colitis are some of the first, but have you heard of Hirschsprungs Disease? Presenting in 1 in 5000 babies a year in the UK, this rare bowel disease is a birth defect that can occur with no family history of the disease. The nerve cells that line the intestines that are needed to move stool along into the rectum for toileting (known as ganglion cells), are not present. Your intestines should rhythmically move stool along in a wave-like contraction which when failing to do so cause tummy distention and constipation. Some of the first tell tale signs that I knew my little boy had...

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Home Schooling and Ostomies

Did you think that your ostomy may help you with home schooling your kids? Nope well it can do!! Ra-Ra is learning about the human body right now; more specifically the organs, so what better way to talk a bit more about ostomies (and poop and pee) than during this topic. We have a whatsapp group amongst the mums in our year group to help give each other ideas etc and one mum is a flipping genius she got some wallpaper and drew round her son on the back and had him draw on the organs from his encylopedia. Now I didn’t have any wallpaper but we had some fax style paper which I luckily had enough to draw round...

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Summer Holidays

So this is my first summer holidays where having both kids at home all the time isn’t the norm as Ra-Ra started school last September. It is also difficult for me because I have become more fatigued than normal due to mental health which is now affecting my ostomy. Being a chronically ill or mentally ill parent or even just a parent (I have plenty of healthy friends who struggle just as much) comes with it’s problems as well as the joy that kiddliwinks can bring. So I thought I would write a little post offering some solidarity. Children don’t amount value to things so they can often want things or do things that you simply just can’t afford at...

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