I remember the first time that things went wrong with my ostomy and I wondered to myself ‘How am I ever going to feel comfortable with this? How am I ever going to be okay with this?’
I’ve felt similarly when it comes to my IBD, when things didn’t go the way they or myself had hoped or planned they would. The blows were numerous and they hit me hard but every single time I got back up and carried on. I chalked it up to experience, learnt my ‘lesson’ from it and moved on.
And the secret is that there is no secret to getting more used to things changing. There is only time and experience.
But with that being said, feeling comfortable with your ostomy is – for me, at least – quite important. I asked numerous times to ostomates when I was pre-surgery ‘how long would it take for me to not notice it anymore?’ and no-one would give me the same answer twice, with a rough time frame in mind. But what did come from that was the overwhelming response of ‘being comfortable’ and that was something that would take a) time, b) effort and c) experience.
Living with an ostomy is not a simple or straight forward thing for more people. It comes with challenges and it comes with some anxiety. But finding ways to overcome the challenges, to lessen the anxiety it could cause and be grateful for it – even ‘comfortable’ with it – that’s an achievement.
So, I’m here to share my tips on how to feel comfortable with an ostomy. Some are simple things that would and do become second nature and others area bit more personal and tricky.
- Find an appliance that works for you. This takes some trial and error, and if your SCN can help guide you, even better! I find having the correct bag and applying it the correct way, helps me feel most comfortable. But I won’t lie, its taken a while to get my products right – and used in the right way and at the right time! – for optimum comfort. Having my bag on, cut to my correct size and applied in my own personal way, helps set me up right.
- Always carrying extra supplies. You never know when a bag will leak or you’ll be caught too close to full and the seal is compromised. I always carry two sets of my supplies, just in case. I have the travel versions of my barrier film and my powder so that I’m not carrying huge amounts of products around on a daily basis, and I periodically check they are in date and not been crushed or squashed so they work when I actually need them. I tend to keep my most recent cutting template – the plastic backing from my Sensura Mio – with me too and my trusty ostomy scissors!
- Look after your peristomal skin. Healthy skin is a very important part of a good stoma routine. But more so than that; not having broken, sore and itchy skin helps the bag feel invisible once it’s on. The times when I can feel my bag is when I’ve recently applied a new bag to broken and burnt skin from a peristomal rash. Knowing when and which products to use in these circumstances is also important. These can range from barrier creams and sprays, powders, seals to pastes; and should only be used when needed, not always, unless your SCN has advised you should. Healthy skin will help your bag feel comfortable on and it’ll boost your confidence too.
- Wear comfortable underwear. Supporting your abdominal area is important for many reasons: hernia prevention is the big one – as prevention is better than cure! – but supporting your stoma bag too. When I say support I mean not feeling restricted or anything feeling too tight, which can not only feel uncomfortable but also might stop your stoma actually working too. There are many many options out there to try, ranging from supermarkets all the way up to ostomy specific underwear companies. Take advice from other ostomates, your SCN and even talk to the specific companies because they are great at fitting and guidance.
- Embrace your reason/s for having one! Don’t be ashamed of your stoma. For many its given them a second chance at life and it helps them live without the restriction of their disease or illness. Yes, its life changing and its challenging, but embracing it, accepting it, loving it – to some degree – can help too. I know that this is a hard one to do and achieve; and for some its just too much. But feeling okay / happy with your stoma can do a lot to your own well being, as well as having a positive effect on your mental wellbeing too.
- Listen to what your body tells you – it is yours and yours alone! There is so much advice on what to do or not do, what to eat and not eat with a stoma and really the only thing that matters is listening to your own body. Yes, certain things can definitely cause issues with blockages and dehydration or high output but its all about balance. Your body is a great thing and it will tell you what it needs and when. Depending on your type of stoma, you will learn over time what is best suited for you but you will also be aware of when and what your body will crave in order to function like it should, or wants to. For me, it’s a balance of the right fluids and making sure I don’t over do the salty things I sometimes crave. When it comes to listening, be mindful of what you can do to correct it, if you go a little overboard! But, it’s all a learning curve.
- Don’t be afraid of mistakes. Mistakes happen, learning to accept this is hard and when things do go wrong, I’ve beaten myself up about not being good enough or not being smart or wise enough to see the warning signs. BUT mistakes make you human and sometimes they just happen. Blockages happen. Dehydration happens. Being on the ball and having supplies in order to fix these things early on is important but seeking help is also just as important. Don’t feel ashamed to ask for help or the fact you need to be in hospital for a solution. My best moments have been when I’ve solved a blockage myself or made my own dehydration drinks and solved my dehydration in the summer.
- Celebrate your victories!. Even the small ones. Changing your bag in a new place. Walking with pride to empty it when it’s too full. Not having a leak. Applying a new product correctly, first time. Whatever it might be, celebrate it! There are still so many people out there who do not know about stomas or are disgusted by them. Their negative attitude and feeling should never make you feel like what you’re doing to cope with what life has thrown at you is wrong or ugly. This is your new normal and you choose to embrace it.
- Focus on the positives! Your mental health can take a huge battering when it comes to living with a stoma. Feeling paranoid or anxious or even less of a normal person are all valid feelings and thoughts. But dwelling on the negatives – how different you are now, how you might not fit in, how you might feel embarrassed or ashamed or not worthy – these things can have serious ramifications. Now, choosing to feel positive is hard, I won’t lie. It’s not easy every day to be positive but it has such a good impact on your mental health, it is worth it. Find people who get it and surround yourself with them. Find some funny in the poop and see yourself as different, unique and a superhuman. Not everyone who is missing a vital organ can cope but when you can and do, its infection. The people who I surround myself with, build me up, inspire me and prove to me that I can be just as positive, even when the shit fits the actually and metaphorical fan.
- Adapt but don’t let it stop you from living. Life won’t be the same as before and you will have to adapt. But change and adaptation is part of life and it should not stop you from living your life the way you want to. There is nothing about a stoma that holds you back. It only means you poop out of your belly instead of your butt. If anything, its more convenient. It’s cleaner and its quicker. Beyond that, we all poop, we just do it differently. We still have sex, we still cook and eat, sleep, work, exercise and even take on the same challenges as everyone else. Living with my stoma has made me more adventurous with my words, my goals and my purpose in life. Even if your stoma was created and its only a temporary measure, you should be grateful for the medical advancements that made living without part of your bowel possible. LIFE IS FUCKING AMAZING. GRAB IT BY THE BALLS.
How do you feel comfortable with your ostomy? What worried you most about having a stoma? How has that changed? Do you have an different tips?
Do you have any questions or queries? Or just want to share your own experiences? Leave me a reply or tweet me @sapphire20 or find my blog page on Facebook!