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Rach's Blogs

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.

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. 

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.