The Last Of The Big 3

Two sleeps. That’s all.




In two sleeps Ben will be emancipated from his colostomy bag and for the first time in 16 months we’ll actually be changing dirty nappies! (Well, that’s the plan!)

The closure of a stoma is a relatively straight forward procedure, and we should expect the recovery process to be reasonably quick. Perhaps only two nights stay in hospital if all goes well, and then a little bit of caution whilst the wound heals on Ben’s stomach.

I am more nervous about this surgery than I thought I would be. In September Ben had is Endorectal Soave Pull Through procedure, which by rights is the one that we should have been most concerned about. Around 12cm of his diseased bowel was removed. This week’s surgery is like ‘pulling off a band aid.’ This is the procedure which will test his bowel function and truly show us how successful the September operation was.

We can now understand how parents feel frightened and concerned about their children needing a stoma and colostomy bag. There are so many aspects to looking after a child with a special need, and a stoma is no different. You have to learn to manage the bags, work out which appliances, creams and pastes work best for your child and in older children you have to council them through the social aspects of having a bag.

It is only now though that I understand why people feel ‘attached’ to their bags. I’ve heard people refer to them as their little ‘security bag’ and that too is understandable. In Ben’s case it provides almost certain safety against bowel infection and eliminates any previous discomfort he had.

Without the colostomy bag we’re stepping into relatively ‘unknown territory’. Ben is possibly now more at risk of getting Enterocolitis again, and more susceptible to tummy bugs than his peers. Some parents choose not to put their kids with Hirschsprung’s into any shared care facility until they’re a little older and stronger. Then there’s the diet. Some kids need a high fibre diet, some need a low fibre diet and some can eat anything they like within reason... All these new scenarios we need to consider. So bring it on! Let’s do this... Without risk there is no gain, and Benjamin has a lot to gain!


For those who are curious about what a stoma & colostomy bag might look like, we have attached a small picture below. Some people are alarmed at the look of a stoma as it's quite red, looking a little like a wound.  Stoma's are much like the dermis on your lips and feel as such. The word stoma is Greek  for 'mouth'.