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Hirschsprungs disease

Looking for ostomy education & related topics, helpful hints & real life experiences? Look no further! Browse our blog for support!

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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Stoma surgery expectations versus reality

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. Having a son with one already and having one as a baby temporarily meant I was no stranger to stomas.  I went in to surgery thinking I knew exactly what to expect...

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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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