Don’t suffer with leaks – see a stoma care nurse!

by Michelle Williams

Don’T Suffer With Leaks See A Stoma Care Nurse

Too many leaks for my liking

Last month, I wrote about how going up a dress size might be linked to the many stoma bag leaks I was having. I wondered whether I needed a bigger stoma bag too. I did try the next pouch size up, but found they only lasted slightly longer than the size I had been using for the last few years.

I was still having leaks far too regularly for my liking - it actually led to me missing the headline acts every night at Camp Bestival in August. As regular readers know, I don’t like to let my stoma stop me from doing anything so to miss something so frequently was a real kick in the teeth.

Shortly after we returned home from the festival (and before I had chance to get a stoma nurse appointment), Callum and I were off for a week with friends in Yorkshire. I was dreading the train journey. 2 hours isn’t long, but when there’s a mini heatwave and your bag is leaking constantly it can seem like a lifetime.

Desperate times, desperate measures when it comes to leaks

I felt the only thing I could do was to take loads of supplies and changes of clothes for the journey. Then I had a genius idea…a baby’s nappy. Not wearing one, per se, just folding it out and stuffing it down the front of my super-large knickers to make a waterproof barrier. Well, desperate times, desperate measures!

Amazingly, I only had 3 leaks on the train journey itself but then 3 more leaks within an hour of arriving in York and finally, by the next morning, I’d had 15 leaks in less than 12 hours. I’d used nearly all the supplies I had with me. I called my stoma supplies company. They could get some more bags couriered to me within 24 hours but what would I do in the meantime?

The stoma care nurses at Scarborough Hospital came to my rescue

Thankfully, I was visiting my friend Jade. We actually became friends through a stoma support forum 5 years ago, although only met in person for the first time last year. Jade had hoofed all of her supplies out when she had her reversal but still kept in touch with the stoma nurses at Scarborough Hospital. Although they are so busy, not only working the surgery ward but out in the community too, they said they could see me straight away.

Hospital ward stoma care nurses are the unsung heroes of the stoma nursing world in my opinion. They’re the first ones you ever speak to. The ones that will coax you out of your hospital bed when you feel like you just can’t and give you opportunity to try on loads of stoma bags - like your very own personal shopper - until you find the right fit.

There was a simple solution

Within minutes of arriving, the lovely stoma care nurse had me up on a bed. She peeled off my existing bag and - I kid you not - she read the underside of the flange like a fortune teller reads a palm. Straight away, she was able to tell me what was causing the leaks and from what areas. I’m embarrassed to say that it was something so simple: the size of my stoma had changed size. I was still cutting the hole of my pouch to 25mm when it was in fact now 33mm!

My stoma had also developed a habit of going flat from time to time. Running off and promptly returning with armfuls of bags, the stoma care nurse explained that I probably now needed to wear a convex bag because my stoma was going in and out of the hole.

She masterfully cut and made me a flange template and attached the new bag. I’d forgotten just how knowledgeable stoma care nurses are, especially given that most don’t have a stoma themselves! We really don’t give them enough credit.

We were all done and dusted within 10 minutes and I left there with not only a smile but a goody bag filled with different bags, powders and creams. I am pleased to report that the bag stayed on for a week! The longest I’ve ever had one on for and the subsequent bag stayed on for a further week. Now my confidence is restored and I’m back to changing my bag every other day. I don’t expect to be totally free of leaks but I now know that they should be a rarity.

Don’t underestimate what a stoma care nurse can do for you

The moral of this story? It’s well worth having regular check-ins with a stoma care nurse. Things change over time and, whilst our own knowledge of our bodies accounts for so much, we shouldn’t underestimate how much these nurses know. Why suffer in silence when there might be a quick and easy solution?

About the author

My name is Michelle; I am 36 and live in Kent with my husband and six year old son. I have a permanent ileostomy as a result of Ulcerative Colitis. You can follow me on twitter.

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