I recently came across a relatively new IBD blog – crohnsfighting.com. The author had a permanent stoma formed in November last year, having had 3 years with one previously. Her most recent post is How I Sleep With a Stoma and when I read it for the first time last week, something did not sit comfortably with me. I have re-read it now, and want to respond from my own experience.

So just to present my credentials – I’ve had three different ileostomies two ends and a loop. I’ve had my current stoma for just over two years.

It is my belief that you should not be having regular leaks – unless you have some kind of hernia or a skin condition. That Louise suffered this, and wrecked two mattresses and who knows how much clothing is unacceptable in my mind. So how do you avoid this?

1. Check your template

This is always my first piece of advice when people are having leaks. Most of the time when I have had a leak it is because my stoma has changed size. This happens quite a lot immediately after surgery, but can continue for at least 6 months, and maybe beyond. Even a small change can make a huge difference. Your stoma nurse can help you with the technique of getting the template right.

2. Body shape change

When recovering from surgery or in remission, or if we get ill again, we can lose or gain weight. Sometimes it happens quickly, sometimes slowly. I put some much needed weight on a while ago and this created crease around my stoma which needed to be filled with paste. I also had to switch to a convex bag. Coloplast have an online tool – Bodycheck – but also advise consulting your stoma nurse. Stoma in a Tea Cup recently reviewed Bodycheck – you can read it here.

3. Cleaning

I did not know that you get products to remove adhesive until just before my second stoma was closed. I was not a happy bunny, having been in the ripper category for about two years! Using adhesive remover spray or wipes and ensuring you cleanse around your stoma is important to getting your new bag to stick properly.

4. Accessories

If you are prone to leaks, then using some accessories like rings, flange extenders, belts or supports can either prevent leaks, prolong the time from leak starting to trouser change time, or just give you more confidence. I use rings and flange extenders. The Brava Elastic Tape is the worlds stickiest thing (NB may not be the stickiest thing) and even if I have a small leak, will contain it until I can get a change done.

The blog does contain some good advice. I always use a mattress protector (I’ve found the John Lewis one, although initially expensive to be excellent and durable)  and I guess disposable bed pads could be useful if you were having a period of leaks.

I guess the bed linen & PJs is a personal choice, and yes stool stain is tricky to get out of white sheets. However, I would reiterate – if your stoma is starting to have that much power over you, then seek advice from your stoma nurse or supply company – you should not be having leaks so regularly!

On eating habits, you will have to get to know your own body, as everyone’s transit time is different. This will also alter depending on how much of which bowel you have left. Your bowel works 24/7, and more so when you eat. Some people find it better to have a small snack immediately before bed to reduce gas build up – so this is one you will have to work out for you.

Louise recommends an alarm for patients with newly formed stomas, and this could be useful if you are on strong painkillers, but again hopefully won’t be necessary long term.

Owning a stoma takes some getting used to, and part of that is recognising the feelings of full bag, the start of a leak (warmth or itch under the flange) and finding your own rhythm of emptying. For me however, the disease or trauma that gave you your stoma is thing you have to battle – the stoma is something you learn to manage, with support, advice and some trial and error.

If you are struggling, there are lots of Facebook Groups who can offer support, and I have always found the ia forum very helpful (and much easier to keep track of). Plus there is your stoma nurse and your supply company. And if you get to the point where you fear going to bed – then speak to your GP, you might need some counselling. We all need a bit of help sometimes – you are not alone in this.

So, there you go. Maybe I have been lucky. Maybe not – but hopefully this is of comfort to some of you.