Learning to live with a stoma is life changing. Living with a urostomy, ileostomy or colostomy can have a huge impact on every aspect of your daily life, including the most basic functions such as eating, drinking, sleeping, and going to the toilet. These activities of daily living which we all take for granted, can become quite overwhelming when you have a stoma. Adjusting to these changes can affect you emotionally and psychologically, as well as the obvious physical adjustments too. Remember to be kind to yourself and if you have any worries or questions, rest assured that other people will have had similar concerns too.
It’s important to remember that having a stoma should not stop you from enjoying life to the full! There is no reason that when you are fully recovered from your surgery, you cannot return to all the things you enjoyed prior to your surgery. Try to focus on the things you are able to do, and those which make you feel happy…. rather than dwelling on those you can’t do. Education is key, try to read the information you are given when you are discharged from hospital as the leaflets are full useful advice and contact numbers of helpful people and association groups, or you can find the information online, there is plenty. Being informed can really make a difference in lifting your mood.
So how can we make life easier for ostomates? Don’t feel alone, is the most important rule. The first thing to remember is that 1:500 people in the UK have a stoma, that is 120,000 ostomates just like you out there who are living with a stoma! So never feel your questions are embarrassing, stoma care nurses have heard it all before, but if you don’t feel you can ask your nurse, there are associations who can help advise you over the phone too.
Here are some tips for helping life easier as an ostomate:
Can people tell if I have a stoma?
People will only know you have a stoma if you choose to share this information with them. There has always been a stigma attached to bowel surgery and stoma formation, people were afraid to talk about it, but things are finally changing these days. People of any age can have a stoma and there are many more younger people living with a stoma than years ago. Due to social media, ostomates are posting blogs on their personal experience and others are brave enough to post photos of themselves wearing a stoma pouch, rather than hiding away. This a massive step, a step forward in breaking down taboos and stigma, by educating the public and promoting a climate of awareness.
When is the best time to change a stoma pouch?
The best time to change a stoma pouch is when you first wake up in the morning. If you have not eaten since the night before, your output should slow down and be relatively quiet, giving you more time to do your stoma care. If you have not had your morning cuppa, then your urostomy should also be on its best behaviour! Don’t forget with any type of stoma, always try to empty the contents before you start.
How will I shower with a pouch?
One way of changing your pouch is to do it as part of your showering routine. You can easily remove the pouch whilst you are in the shower which makes it easier for showering without your pouch on. It will do your skin the world of good to get some fresh air to it. Re-apply your pouch straight after your shower and it saves the whole system from getting wet, which means a slightly longer wear time. You can of course, shower with your pouch on if you prefer, as all pouches are waterproof!
What is the best way of emptying my pouch?
Down the toilet is the answer. But how you do this is completely up to you. If you are at home and it’s your own toilet you might feel happy kneeling down to empty your bag so that you can avoid any splashback. Other ostomates say they have sat on the toilet backwards to empty the bag. If you are out in public you may not fancy doing either of these, so try popping some toilet roll into the water area of the toilet first and up onto the toilet seat, then you can empty onto the strip of toilet paper which prevents splashback and noise. Or simply flush as you go, but you need quite a robust toilet to keep flushing!
If you cannot bend down and are struggling with the toilet to empty your pouch, use an old jug which you can keep separate for this purpose only. Don’t forget to flush the contents down the toilet.
Does my stoma smell?
Many ostomates say this is one of their biggest fears. Your stoma should not smell when wearing a pouch. The pouch is totally sealed and has a vent to let gas escape, but this should not be enough for people to smell anything as the vent has a charcoal filter to help with odour control. You may find that when you change or empty your pouch, the smell is similar to if you were using the toilet as normal. Simply use your usual bathroom air freshener!
What can I wear now I have a stoma?
Stoma products these days are well designed, they are discreet in the way they feel these days and usually cannot be seen underneath your clothes. Many people with stomas often hide away under big baggy clothes with high or elasticated waistbands, others feel brave enough to go back to work wearing a white shirt. It’s totally up to you how confident you feel and what you wear. You will find that time will give you courage.
When it comes to underwear, you don’t have to wear boring underwear with a stoma. There are a few companies such as Vanilla Blush and White Rose Collection who produce a wide range of pretty and stylish underwear designed for anyone with a stoma pouch. You don’t have to purchase special underwear if you have a stoma though.
Living with a hidden disability or illness
Living with a hidden disability or illness can make daily life more challenging for many people with bowel disease, such as ulcerative colitis or crohn’s or those who have a stoma. It can be difficult for others to understand the challenges that you may face on a day-to-day basis. Not everyone with bowel disease or a stoma feels they have a disability, but by wearing the Hidden Disabilities Sunflower Lanyard discreetly indicates that you may need a little extra support or additional time.
Stomas can also be classed as a hidden disability and therefore you are allowed to use the disabled toilets in public if you so wish. This gives you the opportunity of having a private toilet which has a sink and bin easily accessible. Speak to your delivery company about a radar key which will allow you access to one of the 9000 disabled loos across the UK.
The Hidden Disability Sunflower scheme has been successfully introduced to UK airports, supermarkets, railway stations and sports venues and it continues to successfully spread to other areas across the country.