Disclaimer: This information is based on my own research into this particular aspect of stoma care as well as some personal experience and should not be used as medical advice or a diagnostic tool. The suggestions given within are taken from sources laid out in the references header. If you seek advice regarding the things you experience within your own disease, please contact your SCN for medical advice.
If you are looking for the other posts in the ‘What is a Stoma?’ series, you can find them here.
Welcome to Part V in my new blog series on “What is a Stoma?”
This instalment covers practical hints and tips for managing a stoma in the immediate post op recovery period as well as some long term advice. It also covers the importance of abdominal exercises, some simple dietary advice upon first eating with your stoma follow discharge from hospital, some stoma supplies advice on how to store and manage the products in a practical and daily way.
Following on from that will be some more about the mental health aspects of living with a stoma and things to consider. This will cover body image, sex, coping with a stoma – when it behaves and when it acts up too – as well as returning to normal activities. Comments are welcomed as always, hope you enjoy! xox
Managing Mental & Physical Recovery
Hints & Tips – Immediate
Surgery takes a lot out of you. The first couples of weeks, you’re advised to take it easy as your body recovers from the actual act of having surgery, learning about your stoma and letting your body release all the after effects of anesthesia. ‘Taking it easy’ is sometimes harder than it seems or sounds. I remember having tons of energy after surgery, because I was so unwell before. But I would get tired very quickly and I found standing up for too long hard to cope with, I just wanted to be better. But recovery is important.
- Eat small meals and have some snacks near by. Marshmallows and some crisps are always handy.
- Keep drinking plenty. Don’t wait until you’re thirsty to drink!
- Be mindful of the fact your stoma will start to change size and neglecting this can result in sore skin around your stoma. Preventing this is better than trying to solve it – it can batter your mental health, when all you want to do is continue to improve, and this can feel like a set back.
- Despite set backs, you are doing really well! Remember this.
- Learn about your stoma, if you want to. I found educating myself very helpful because I could suss out my problems and then speak to my SCN.
- Have a good relationship with your specialist nurse. She (or he) have years of experience and the products available to help you, if you get into trouble.
- Rest. Listen to your body; you will take a couple of weeks to find a comfortable way to sleep with a bag on, and you will get back into a normal sleeping pattern. Please be patient.
Hints & Tips – Long Term
All of the above are still relevant, at any point, after you recover fully. I find that listening to my body is very important because I now need to take care – better care – of all the things I have going on. And that does become second nature. Other things that become second nature are – for some reassurance :
- Changing your bag will become easier, the more that it happens. You’ll learnt the best time to do this, depending on your lifestyle and eating habits.
- You will find out which foods help and which foods cause issues. Learning this is trial and error and mistakes do happen; you should not define your relationship with food based on what you have to avoid. Embrace the things you can eat!
- On that note; embrace the things you can do with your stoma, instead of seeing what you can’t do. For all intense and purposes, there is nothing you can’t do with a stoma. Of course, this is all relevant – it depends on what you like and want to do with your life.
- Support your abdomen! Wearing support wear or high-waisted underwear can give some added support to your stoma and bag when you desire it. So many companies do support wear, bespoke if needed, everyday wear or even special sexy underwear for male and females.
- Life is different with a stoma but it is nothing to be ashamed or embarrassed about. For many, stomas are a shock and are unknown about, and for others, it is something that can happen due to a chronic condition. Either way, stomas save lives. I know I would be living a very different life if I didn’t have mine.
- Find your people who get it. Having a support network – online or in person, whatever – people are important, especially those who understand your stoma. No one should ever make you feel bad about your stoma, they are not worth your time to try to change their minds. Let their embarrassment or ignorance be their issue, not yours.
- If in doubt, laugh. Seriously, having a giggle about it helps. Poop jokes. Fart jokes. Stories about it, it all adds to the canvas of life.
Abdominal Exercise – Core4
There is a lot of conflicting information about exercising with a stoma, but a good starting point is Coloplast’s Core4 program. It’s aim is simple – gentle exercises to help improve the strength of your core muscles, which are cut when ostomy surgery is performed. Having a strong core prior to surgery is a good foundation, but continuing them post op is also good. They are gentle and can be done in bed – win win!
Click here for the PDF.
Simple Dietary Advice
Along side exercise, there is a lot of advice about what to eat and what not to eat after surgery. This for many new ostomates is the biggest hurdle because you want to enjoy your food but don’t want to cause yourself additional problems with your stoma bag. Knowing that you have no control over when your stoma works, makes this a hot topic for those fresh from surgery.
As a general rule of thumb, you want to eat small meals, regularly whilst drinking plenty of fluids. A simple diet should be followed for the first couple of weeks after surgery in which you will need to possibly gain back some weight and thus strength. After that, a well-rounded diet can resume. Coloplast have made a wonderful PDF with the types of food which can cause issues and those which can help lessen some too; available here. For some great advice about after the first couple of months, Eric of VeganOstomy wrote this piece and it’s been a great help for me.
What else is important is hydration along side diet. Salt’s Healthcare have a great page on it.
Stoma Supplies – Storage & Daily Practice
Despite being able to get your ostomy products on the NHS, the products can be quite expensive. So it’s a good idea to only keep what you need and use the oldest products first. Some products do have a shelf life – which usually printed on their boxes – and it is good to mindful of this when organising your products. I keep a big box of all my products that I use, kept in a cool place away from direct sunlight to avoid any of the products spoiling – yes, some can; the adhesive use in the baseplates, the rings and seal and the flange extender can be affected if they ge too warm, sometimes making them defective when needing to use them. Like wise, using products close or past their ‘expiry date’ can also be compromised and not work to their best advantage. Using a “first in, first out” system with your products is a good habit to get into. I keep tabs on my stock on a regular basis, and always check before I order, what I actually need to request.
As you get more use to your stoma, you might find that some products change; most probable is your stoma bag. Any unused stoma bags can be given to Stoma Care departments at hospitals.
When it comes to the products I use on a daily basis; I keep them in a smaller box on my dresser. This – minus my ostomy bags – is what I use on a regular basis:
- Adhesive remover spray
- Barrier spray
- Ostomy powder
- Skin cleanser
- Adhesive remover wipes
- Protective Seal
- Plus my template, pen and ostomy scissors.
This means they are close to hand, easy to find, outside of their original boxes and I only use what I need. I also keep dry wipes and rubbish bags close to hand too. Where to keep your supplies is up to you, but you definitely want them away from sunlight. I’ve found that during the winter, keeping my supplies in a place without a draft or a chill to be important too. Whilst products melt with warmth, they can also crack when too cold.
It’s perfectly natural to wonder what will happen to your body after major surgery. Not only is there a scar, there is a bag there now too. Getting used to that being there, is a big first step. Then there are the adds on to having a stoma: worrying about it leaking, the odour, wondering if people can see it, hear it, smell it. All normal and expected things to wonder about after surgery. It’s natural to be cautious after surgery too – will I hurt my stoma, can I cause it any pain, can I touch it, how do I change it? – all questions and fears that begin in post op. Knowing and getting use to the fact that this bright red bit of your intestines coming out of my belly doesn’t have any nerve endings and will only get sore if output gets on the skin for prolonged periods of time, is a good starting point. Once you can get your head around that, starting to feel comfortable changing it comes next.
Your body will look different. You might have a big midline incision. You’ll have scars from tubes and scopes. You’ll have the ostomy bag on your belly. You’ll be bloated (to begin with). But once the scars heal, they soften and you only feel an itch every so often. The bag becomes more comfortable as the swelling of your abdomen and your stoma goes down. You’ll become more confident in changing the bag and hopefully this will in turn help you feel proud of yourself, proud of your body for continuing to function, despite your need for surgery.
For me, the feeling of achievement of hitting my post op goals and targets – changing it myself, going out for lunch with it, not having a leak in public, gaining weight, the scar healing, looking after my peristomal skin – helped me feel confident. Knowing that my alternative was medication that would have meant getting sicker before getting better, I’m glad I took the chance with surgery. I see my stoma as a blessing. It’s not an easy thing to love – sometimes, I can hate it – but I see all the good it has given me and how much more intone with myself and my body I am because of it. Maybe some of this is down to age, maybe down to knowing a stoma was a possibility with my illness; whatever it is, I am proud to have one.
Returning to Sex
The same fears with body image, come into intimacy with a stoma. It is a myth that you can’t have sex with a stoma, completely untrue. But what is helpful is knowing what can make it easier.
- Talk to your partner. Opening up and sharing what worries you or concerns you, helps the both of you have a dialogue in which to discuss anything regarding being intimate with each other. Let your partner know they won’t injure your stoma by having sex and communicate openly if something feels uncomfortable.
- Empty the bag prior to any activity. Not only does this make it more comfortable, it also lessen the risk of leaks happening. Always check the opening of the bag, making sure its securely fastened shut!
- There are support bands and underwear to hide and / or support the stoma bag during sex. Some people can also have a mini bag instead of a normal bag, to be more discreet.
- Body contact with the stoma bag won’t make it come off and loosen it! The adhesive in most baseplates is very strong and the warmth of two bodies will add to that. It would take alot of force to get a stoma bag to come off!
- Try different positions to begin with; side by side is usually good to start with as its not so much face to face contact. But experiment and don’t be put off by mistakes or embrassement.
- Important: no sex in the stoma, no anal either.
- I’ve always found that once I start being intimate with my partner, I forget all about my stoma bag until the end.
- Females: you might need to discuss contraceptives with your GP or SCN as some pills can’t be absorbed fully with an ostomy. As a matter of fact, always use a condom.
Sex should be fun and having a stoma won’t hold you back. The old adage is true: The way you see yourself influences the way others see you. Have sex when you feel ready to have, not just because its be x amount of time. This is a new part of your journey and it should happen on your terms. Enjoy it!
Coping with a Stoma
This very much depends on the reason as to your you’ve had ostomy surgery; as being prepared for it, does sometimes lessen the shock and the acceptance can happen. For those with illnesses where ostomy surgery is discussed, whilst still being a shock – naturally – explaining and talking about the positive upsides of such a surgery, can be very beneficial in helping you feel reassured.
Myth v reality of what life with a stoma is like is a big point here. For many, talking about stomas brings up the image of being old, unable to control your bowels and needing to poop into a bag until you die. Well, despite needing to poop into a bag until I die, I am not old and whilst I can’t control when my ostomy produces its output, there is a lot of good that comes from having an ostomy.
There is a bias that you can’t do x, y or z with a stoma. You can.
People still believe that stomas smell, they do not. Modern ostomy bags have filters to absorb the smell and only the ostomate will really know the true smell of the output when they empty their bag.
They think that you can’t wear the same clothes, have sex, go swimming or return to normal activities, like working or exercising; but you can. You might need to make some adjustments and be more prepared, but you can do anything you used to. If anything, having an stoma might mean you want to do more and try something new! There is no stopping you with a stoma.
Most importantly, I found reaching out to those who also have stomas can be most reassuring in helping me cope with my own stoma. When I can talk, quite candidly, to others who know what I go through and we can joke and help each other out; that helps me feel supported. Knowing that I have friends in the same situations as me, makes me feel less alone. Being able to help others, after being helped by older ostomates, is also rewarding too. Having real life, patient experience from someone who has gone through what you are going through, is very helpful.
Returning to Normal Activities
For most this is returning to work. Being fit for going back to work is the first stage; this is usually suggested for 8-12 weeks after surgery, so that you and your stoma have had a chance to get used to one another. It will take a while to get back to strength, get into a new routine and feel comfortable about being in a new environment too. In that, there is also the conversations with colleagues about your new stoma too; if you wish to tell them about it.
Some key things to remember:
- Take spare supplies. I always carry two spare bags, rubbish bags, seals, remover wipes and flange extenders just in case. I have had to change my bag in a public bathroom and I have had to change it whilst at work. Feeling comfortable doing this has taken time but having my supplies with me means I can be done in 15 minutes or so.
- Go back when you feel ready. If you need more time, get more time on a fit note to cover you. Everyone recovers at different paces.
- I would always go back on a phased return because you’d be surprised how much energy working takes if you’re not used to it.
- Discuss with your employer how they can best support you. Some will offer part time hours, reduced duties or even different duties until you feel comfortable to go back to your usual work pattern.
- If you having lifting duties, wear a support belt to help prevent hernias.
- Always have someone at work you can talk to so you don’t feel alone at work. This can be a great comfort if you get into difficulty.
- Consider some trial runs of your morning routine at home: sometimes it can take longer than you think!