The past month has seen me suffer from about six full blown bag leaks. By full blown I mean that I haven’t noticed it start slowly and output has leaked onto my clothing, and at night onto bedding too.
Since starting to use the Salts bags about eight months ago I haven’t had any. I have been super lucky in finding a bag that works so well for me. The leaks I have had recently have been down to my hernia making the area around my stoma not flat anymore, the warm weather and extremely sore skin due to the previous leaks, which then creates a vicious circle.
Having a leak can make you feel seriously demoralised. I get mad at myself as maybe I didn’t concentrate enough when I was putting my bag on. I get upset and feel dirty. I get annoyed and resent my stoma, especially when I get a bout of them like this. It can also be really embarrassing, especially when in public or in bed with your partner.
Luckily, Ste also has a stoma and knows all about these feelings too. While still using my old type of bag, and not long after we got together, I had a huge leak in his bed. I was mortified but he was amazing. He grabbed me stuff to clean up with and change my bag. He then stripped the bed and put fresh covers on. Then he went down and put the sheets in the washing machine and brought me up a cup of tea. It was so reassuring and lovely and I couldn’t be more grateful of how he handled that night. Not everyone has such as supportive partner so I feel extremely lucky.
So, what to do when you have a leak? At home it is a little less embarrassing and you have all your stoma supplies and clean clothes to hand. I suggest rinsing any soiled clothes and getting them in the washing machine as soon as possible to try and prevent staining. Me and Ste both have the waterproof mattress protectors on our beds to prevent anything getting onto the mattress. I got mine from Asda. My delivery company, Bullen, also supply bed pads as a complimentary item. These are great to take when you are staying away from home.
I always carry an emergency kit in my handbag or car. I manage to fit enough for 3 bag changes in mine and have 3 bags, scissors, adhesive remover spray, hand sanitizer, barrier wipes/spray, rubbish bags, a small pack of wet wipes, a few dry wipes and some tissues. I don’t always take a change of clothes around with me as I don’t like having to take a massive bag out everywhere I go. I did for the first few months until I felt more settled with my stoma and found a bag which suited me. It is always handy to pop a spare outfit in your car though, especially if you will be out for a whole day or far away from home.
As for how you deal with it mentally, all I can say is it does get easier the longer you have your ostomy. I don’t think I will ever be ‘ok’ with it happening. I can, for the most part, handle it better now as changing my bag comes more naturally which makes the whole process quicker and easier. When it happens a lot in a small space of time you may start to feel down. Try not to blame yourself. Speak to your stoma nurse. It may be a case of needing your stoma remeasured or to try a new product and they can help and advise with that. And you may hate your stoma for a while (Stanley’s name changes to ‘Shitbag’ when I am in a mood with him) but remember the reason it’s there. I may not have been here today without it. My stoma has given me a new lease of life and for that I will always be grateful, leaks and all.