You can choose your stoma products

Your stoma care nurse will have got you set up on a pouch and any accessories you may need before leaving the hospital. Sometimes however during your chemotherapy treatment you may find some of your side effects may make you re-evaluate the pouch you are using.

This doesn’t necessarily mean you needs to switch the brand you are currently using and feel comfortable with, most manufacturers will have a range within their products. You might just want to make some slight adjustments and potentially for only a few days during your cycles as well. Keep reading to find out what’s on offer out there!

Ostomy pouches comprise of two main systems – one-piece and two-piece. So, what’s the difference?

With a one-piece system, you remove the whole pouch every time you change it.

A two-piece system has a pouch that is attached to a separate baseplate (the stick part that attaches to your skin). You simply change or empty the pouch, leaving the baseplate in place.

Both options then will have a closed or drainable option. Closed options do not have an opening at the bottom of the pouch so you dispose of the pouch once full/as required.

Drainable pouches have an opening at the bottom that you can unfold when ready and drain output in your pouch into a toilet. This allows you to drain as required and keep the same pouch on for a longer period.

All systems have benefits, and your nurse will help you decide which is best for you but here’s a few considerations depending on side effects you are experiencing.

Increased output

If you are finding your output is looser than usual a drainable pouch may be more suitable rather than changing your pouch more often. Alternatively consider a 2-piece pouch where you are just replacing the pouch as opposed to the baseplate each time – this will help protect your skin from multiple changes per day.

If you are changing your pouch multiple times, think about an adhesive remover which can come in spray or wipes form and helps you remove the pouch gently, not pulling at the skin.

Another option to consider is you can order pouches in multiple sizes, so during times of increased output you could ask for maxi or high output pouches that contain more liquid.

Dexterity challenges

If you are finding cutting the baseplate of you pouch challenging, especially if you are experiencing pain or clumsiness in your hands that’s understandable. Speak to your delivery service or stoma care nurse about precut pouches – sized to your stoma. If you’re exhausted and can’t face cutting pouches this is another good option for you. Every little thing helps!

Another option, if you are struggling to cut your baseplate accurately you may like to use an absorbent ostomy seal around the base of your stoma. This mouldable ring will act as a secondary barrier to prevent leaks should there be any gaps.

Closed versus drainable pouches is also a consideration – you may find it easier to change your whole pouch as opposed to draining it which you may find fiddly to roll up the outlet if your hands are in pain.

One thing to definitely consider is creating small stoma kits and keeping them handy and accessible in your bathroom or bag if you are out and about. For any side effect you are experiencing, this will take the thought and pressure off finding the right pieces when you’re going to empty or change your pouch.

If you are interested in trying different products, we always advise chatting to your stoma care nurse to see what is available – both in your current brand and others. You have to be comfortable with what makes you feel secure and in control, and you have every right to try a few and find your best fit.

Returning to normality after chemo and ostomy surgery

I have learnt to just adapt and be very prepared for my stoma and this has helped to ease any worry I may have had. One of the first things I did when I was undergoing my first set of chemotherapy was look for a new job. I had just left teaching but wanted the financial security of a job again. I don’t know how I managed it, but in the short period I was at home between my hospital stay with chemotherapy induced colitis and the surgery to remove the tumour, I managed to find a brilliant job. One which was, and still is, understanding of what was happening and happy to be flexible for me.

Only 3 weeks after surgery there was an offer of a training course for this new job. There was no pressure for me to go – it definitely wasn’t mandatory, and I think my boss thought I was daft, but I was craving that sense of normality. I didn’t want to feel like a victim of the cancer and the stoma operation. Although I was worried it was too soon I also really wanted to do it. My family encouraged me, and I decided to go for it.

It involved a car journey then public transport with 3 new colleagues – plus a small amount of walking just to get to the venue. When you’re going through chemotherapy and recovery from surgery, the exhaustion can be overwhelming and I’d always make sure to rest where possible, so this was a lot for me – I was missing out on my naps! But I was so proud I did it! Plus, I changed my bag in a public toilet successfully (not a disabled facility either). Looking back, I could have said no, but for me personally overcoming that fear early on really helped me see I can do it, I don’t have to be held back.

For this trip, and for those first few months, I definitely took out lots of extra bags and clothes with me – just in case. It’s a bit like having a baby, for the first 6 months or so you’ve a huge bag with you to cover any eventuality, then you get a bit more confident, realise things happen but you can cope. You then can reduce what you need out with you. I still have an extra pair of leggings in my bag though, I’ve never needed them but they’re a comfort to have.

I am also really vocal about my stoma; I love meeting someone else who has been through a similar experience to me. At a recent event I got chatting to a stranger and he started to explain it was his first time out in a year, post bowel cancer and stoma surgery. I was delighted to chat to him and share similar experiences. Everyone’s journey is their own, you do it in your own time, but I find sharing those stories can be an encouragement and you feel an instant connection in doing so. Being brave is really important during the whole journey.

From regular to unpredictable – coping with output changes during chemotherapy cycles

When I first got my stoma, it took a while to adjust but very quickly my routine became quite regular. I was very fortunate the stoma didn’t impact my diet much either, just having to be conscious of the size of what I was eating.

During chemotherapy though that really changed everything. I knew that my output may become a little bit more irregular, but I wasn’t prepared for how drastically it changed and wasn’t prepared on how to manage it.

My chemotherapy infusion would be on a Wednesday and then I had 14 days of tablets – Capox chemotherapy. After about 48 hours of the initial infusion, I would find my output would increase so much. It would turn into a paste in consistency and would be extremely hard to drain from my pouch – it used to make me gag trying to drain it. I therefore preferred to use closed bags but was changing my bag 5, 6 even 7 times a day. This change in output would last about 5 days.

I was offered anti-diarrheal medication but as I’d experienced a blockage earlier on, I was anxious about taking that so opted not to.

What I found really useful, and a friend with a stoma told me about this, was to eat bananas while I was experiencing this looser output. For me bananas really helped to thicken the output up. I’d be very conscious about what I was eating and drinking. I find that drinking a lot of water can loosen my output – in general. So, I would drink little and often so I didn’t become dehydrated. Plus, I also tried to drink drinks with electrolytes in them as I was conscious about how much I was going to be losing through the more regular, looser output.

Another thing I found so helpful was to create little stoma bags with everything I needed for a change. I was finding when my stoma had a movement it happened quickly, and the pouch could be full very fast meaning I’d need to dash to change. After 2 cycles of having to ask my husband to get different things for me, I had a lightbulb moment and began making up these kits which meant I was ready to go when needed. Even if I was exhausted and couldn’t get up (chemotherapy is extremely tiring!) I could even do a quick and mess free change from where I was. I now keep kits in the bathrooms at home but also in the car and my handbag, so I’m never caught out.

What I keep in my stoma kit:

• Pre-cut bag
• Dry wipes
• Adhesive remover
• Vit E Barrier wipes

Listen to your body with chemotherapy fatigue

The tiredness that you have during chemo, you just feel tired. That’s the biggest reported side effect of chemo.

So, when you have the stoma at the same time, it just feels like it’s a bit of hard work, to manage it sometimes. It was never at the point where I couldn’t manage it, but I did feel like it was a bit of a pain.

Your sleep is a bit compromised. It’s something and that doesn’t help with the fatigue either because you’re tired anyway and then on top of that, your sleep’s not always great.

You have steroids when you have your chemo infusion, you’ll get steroids, so you’ll be bouncing off the walls for a couple of nights afterwards and at 3 o’clock in the morning, being wide awake, staring at the ceiling. And then after that once the steroids wear off, that’s when you really kind of want to get some restful sleep, but sometimes you can’t because you’ve all these bits attached to you and you’re just getting used to all of that too!

If you sleep in your stomach like I do, then that meant that I wasn’t getting great sleep for a long time because I wasn’t able to be in my natural sleeping position while I was getting used to the stoma healing and then when I had the pic line in, I couldn’t sleep on my sides either so I ended up sleeping on my back. So, I found that I didn’t get much sleep. You know, sleep was pretty difficult during the time when I was going through chemo treatment.

So, the first couple of chemo sessions, I went out. You know, I tried to do things and then I realised that, just my tip to people, would be just chill, use that time just to hang around the house just to take it easy. Just to relax. I did gentle yoga and a lot of walking in that time as well.

And exercise is something that’s really helpful and really useful in those days too, because it gets your system moving a bit.

So, there are things I would say definitely get yourself like a comfy outfit, some comfy clothes to wear. Because in those few days I had so many jogging suits.

I have big like cosy comfy jogging suits and it’s just because when you after you have the chemo, the last thing you want is to have tight, restrictive clothes so, you know, get yourself a really nice cosy little kind of jogging suit.

And so just to just to slob about in for a few days, you know, until everything starts to settle down probably, I’d say the week after chemo, you know the second week you start to feel a bit more normal and your system’s kind of less erratic so, yeah, treat yourself to some new clothes.

The other thing that that I found really helpful, As a precaution, I never needed to use it, but I bought a waterproof sheet to put under the bed and it was more the peace of mind because when you’re going through chemo, when you know when you’re having steroids that are keeping you awake, you know, sometimes if you’re feeling sick or whatever and you don’t get the quality of sleep that you want to have the last thing you want is to have on your mind. Is this going to leak all over the bed?

So it was just more for peace of mind. I bought a waterproof sheet, and I didn’t ever need to use it, but the peace of mind just gave me kind of more restful sleep.

Practical tips for looking after yourself when tired

When you’re tired everything can feel much harder or overwhelming. Try some of these tips to help you feel more comfortable:

• Prioritise comfort – try wearing loose clothes that allow you to feel comfortable no matter where you are.
• Sleep when you can. If steroids are keeping you up at night, let yourself nap during the day if you can. Take your time and listen to your body.
• Don’t feel under pressure. You may have commitments you have to attend to but try not to plan a lot or put too much pressure on yourself during your treatment. Ask for help and take time to relax too.
• Try gentle exercise. Movement can be beneficial for your body but also your mind. Take it slow and be patient.
• If you’re worried about leaks at night and this is keeping you up, invest in a waterproof sheet. Hopefully you won’t need it but it can give you peace of mind.
• Consider adding a seal to your routine at night as well, to give you extra security against leaks so you don’t need to worry as much about your stoma.

You are going through so much – from diagnosis to treatment your body (and mind) have experienced a lot which all can impact your sleep patterns. This isn’t helped at all by chemotherapy fatigue and that overwhelming sense of tiredness. It’s something Kathy experiences during her chemotherapy cycles and she quickly learnt to listen to her body and just take it easy. Have a listen to her experience here.

Changing pattern of output with chemotherapy

The biggest change that I found with chemo, and I know that a lot of other people found this too, is constipation and diarrhoea just becomes much more extreme.

So, I had my chemo on a Wednesday and I was super constipated until the Sunday.

So, I was always constipated from the Wednesday until the Sunday, and then from the Sunday it was explosive diarrhoea for the next few days. So that’s a pattern, I think it’s the chemo drugs themselves, but also steroids and all of the anti-sickness tablets, all those drugs that go into your system, it then bungs you up literally for a few days and it can be pretty uncomfortable too.

So, it can be pretty sore because you feel bloated and you just feel like you, you just feel like you need a release.

But the biggest thing that I found was when it then all came out, I think it’s called purging, but when it all came out it was it was really explosive.

It was even fizzy. I found you know some points it even seemed like it was quite fizzy. So, it was really extreme.

What I found and one of the things I will mention later is that it filled more than a bag when the diarrhoea came so you can get higher output bags and I wish I’d realised that at the time because that would have made it easier. So, I was always I always stuck close to a toilet from Saturday evening, all day Sunday.

I always stuck somewhere close to a toilet and hung around in the house, which was my kind of way of getting around it

And another change that I made at that time was I switched to the convex bags. I hadn’t used the convex bags and I had had leaks, so as soon as I switched to convex bags, the soft convex bags I didn’t have any more leaks and they really helped during chemotherapy.

Sometimes you need to rush to the toilet when you do need to go and when you start to have diarrhoea, you really need to get to a toilet quickly. So, I prepped some little bags.

I had some little kind of bags ready there to go so that I could just grab them and run into the toilet rather than having to mess about and look for where my bags? Where are my wipes? So, you know, have those handy.

So, another top tip that I got, the stoma nurses suggested to me to use drainable bags. I’d been using closed bags until then, but that’s when I switched to using drainable bags and it really was a lifesaver. It’s a lifesaver to use drainable bags during chemo, and I still use them because I personally I think they’re just much better, but they’re definitely really helpful during chemo treatment.

So, I just find that having the bag itself is fine for me, but the I did learn very quickly to use the barrier wipes. Barrier wipes are brilliant.

I mean, my routine is very simple. I just have the bag and the barrier wipes and that’s it.

So, you know I’m pretty lucky, but I think finding the right bag is particularly important for that. I know that people said that to me at the start.

I used quite a few different bags until I found the one that was right for me and then I would stick with that and touch wood, touch everything, that you know that works really well for me.

Practical tips when chemotherapy impacts your output

• Consider increasing your pouch size. Check how much your pouch holds with your stoma care nurse and see if a bigger option is needed.
• Think drainable. If you are experiencing higher levels of output, a drainable pouch you can empty as needed might be a better solution. This will help protect your skin from multiple changes.
• Why not create stoma kits in your bathroom. Include your pouch and any accessory you need plus disposable bags, wipes etc in an easy to reach place when you’re in a rush.
• Make sure your routine is secure against leakage. Chat to your stoma care nurses about convex pouches or an absorbent seal to help create a snug fit around your stoma.

Output changes is a very common side effect during chemotherapy, especially just after your infusions. Some adjustments to your routine can help keep your stoma care routine safe and secure. Hear what Kathy did during her journey.

How long does it take for it to get into a regular routine after chemotherapy?

Because my chemo started just quite soon after I’d had the stoma at the start it was still quite round, and I think probably it’s quite swollen as well for a while until it settles down.

So, it eventually then became oval. So, I have an oval shaped stoma now and when my bags are precut they’re cut into that oval shape

That changed whilst I was having chemo. The shape of my stoma changed.

I think it most for most people that happens, and it happens within a few months of your stoma being created, but mine did change, so I had to get different bags.

So, after chemo finished, I took chemo for three months and then after that I would say it took a good three to six months after that for my bowel to start to settle down.

I always say to people when anyone asks me, how long does it take for it to get into a regular routine?

You’re told by the surgeons and the stoma nurses will normally tell you it takes about six months for your bowel to settle down. But I would say when chemo comes in between, it took me a good year until I got into a routine, and it does.

I didn’t believe at the start. I didn’t believe it ever would get into any kind of routine. Just thinking this thing is never going to settle down.

It’s a nightmare and I was changing it, when I came home from hospital, I was changing it five times a day, which at the very beginning that was really horrendous. I came home from hospital with a flat standard bag and it wasn’t, I think because of the velocity of output at the time and your body’s getting used to it that I would say that anybody else, this may not be right for everybody else, but certainly as soon as I discovered a convex bag, it made a big, big difference.

When I came home from hospital, I think because I was just using the standard bag just immediately after getting the stoma, that gave me a lot more leaks. So, like I said, I was changing the bag five times a day and then I had really, really sore skin. That’s when I found out about the barrier wipe and use the barrier wipes.

But my bowel, it did settle down and it did settle down so within a year of me having the operation. It very much settled down and I said, you know, I look back when people say to me is it ever going to settle down, this is a nightmare.

Yes and no, because I was there, but trust me, it really does. It does settle down and it’s now into such a regular routine. Sometimes I even forget I have a stoma.

Practical tips for coping with an irregular routine

Your stoma will change shape and size, tips for managing this:

• Measure your stoma regularly to ensure a secure fit, that the pouch isn’t too loose or too tight.
• Consider a mouldable seal around your stoma as an extra barrier if your pouch is cut inaccurately.
• Your routine may change – don’t worry this is normal, especially as chemotherapy drugs are in your system.
• Your stoma and your body is unique to you, as such it can take a while for your routine to settle but you will get into a rhythm.
• Talk to your stoma care nurse if you are concerned or visit eakinostomy.com for more advice.

If you are to have chemotherapy as part of your treatment plan for colorectal cancer, it typically begins 6 to 8 weeks after stoma surgery. Kathy shares how in the early days she struggled to get into a routine, and chemotherapy changed this further. However, things soon settle and now she is thriving with her stoma.

Choosing what stoma products worked for me

While undergoing chemotherapy I would find that my skin around my stoma would get sore and red. I have a stoma that is close to the skin level, almost just underneath it and therefore when I was experiencing higher output, I would find sometimes it would reach my skin, leaving it really sore. It was a vicious cycle though, if my skin was itching, I would need to change my pouch, sometimes up to 7 times a day, but that was further irritating my skin so was repeatedly irritating the skin – but it was so itchy!

At the same time, I had neuropathy and palmer planter (Hand-Foot) syndrome where my hands became painful and sore plus very sensitive to cold. This meant I had to make a few adjustments to my routine.

The best thing I discovered was Vitamin E barrier wipes – these were and still are amazing! They really help to soothe the skin around my stoma from the irritation.

Originally, I had been using an adhesive remover spray, but I was finding both the bottle too cold for my hands but also the spray cold when it hit my skin. Instead, I switched to wipes and warmed them a little beforehand, so it was easier to use.

When my skin was really sore and itchy, I also found it was a relief to take the bag off, pop a disposable bag in the waistband of my trousers just in case and just let the air get around my stoma. If I knew my stoma wasn’t going to be active for a little bit, I’d go sit on the sofa and just let it air.

Keeping my routine simple too, I would sometimes use the disposable wipes in cool water to relieve the skin around the stoma – it is so refreshing and cooling. However, with sore hands I would also have to be conscious of them. I would keep them moisturized and cared for but sometimes if I needed to keep them out of water, I would just use a pair of plastic gloves during my stoma care routine to protect them. You have to do what is right for you.

One thing I wish I did more was question my stoma care nurse when I had problems with sore skin. In retrospect, a 2-piece bag might have been a good option, but I didn’t know at the time. So don’t be afraid to ask and speak out if something isn’t quite right for you.

Chemotherapy and neuropathy – impact on my routine

So in terms of dexterity, using the stoma bag, the oncologist did tell me beforehand that I may need help to use the bag and my hands might become so difficult and clumsy to use, that I might need help.

I didn’t luckily enough, but it just became more difficult. You know, my hands were definitely a lot more clumsy, and it’s harder to do more sort of pernickety little things.

So again, getting your bags precut for you and trying to have everything ready, so having the kit ready there in the in the toilet all ready. Just having things pre-prepared just makes it all a little bit easier.

So another tip that I would give to people if they can is to make sure that get your bags pre-cut by your supplier because it just means it’s less hassle and you know when you go through chemo every little thing that you can do just to make life a bit less difficult

Whoever you get your bags from, your manufacturer or your home delivery company, they can pre-cut your bags to your stoma size. So, if you’re not having that done already, that’s definitely a big tip, even if you’re not going through chemo. That’s just a really good tip.

The oncologist suggested to me when he said my hands might get so bad, he was saying, you know, try to get trousers that don’t have buttons in them and at the start I thought what really is it going to be that extreme? Actually, I did end up just having kind of slouchy jogging bottoms.

So even though I thought at the start, no way that’s not gonna happen to me. It was brilliant. You know, just to have kind of jogging bottoms that you can just pull up and down. So, wearing kind of stretchy clothes. It is good. You know, for a number of reasons…

Practical tips for helping with dexterity:

• Consider pre-cut baseplates so you don’t have to use scissors – speak to your stoma care nurse or home delivery company as they should be able to help with this.
• Ask about different pouches that you might find easier:
• Ask about a 1-piece solution if you find changing your whole pouch easier.
• Consider a drainable pouch if emptying a pouch is better for you.
• Or if you are struggling changing a full system, consider a 2-piece with added protection of an absorbent seal for increased weartime.
• Why not create kits of all products you need in your bathroom so you don’t have to look for anything when a change is needed.
• Think comfortable! Wear whatever makes you feel warm and cosy. Trousers that pull up as opposed to buttons, warm slippers and gloves are good when your hands or feet are feeling numb or sore.
• Keep your routine simple. Choose what feels right for you and ask for pouch and accessory samples until you find your perfect match – just like your favourite jumper.

A common side effect of colorectal cancer chemotherapy is neuropathy or hand foot syndrome – sensitivity, pain, cramps or clumsiness in both feet and hands. This can impact how you care for your stoma and Kathy shares her hints and tips on managing this.

Cold sensitivity during colorectal cancer chemotherapy

During the chemo treatment I had cold sensitivity and I had neuropathy in my hands and my feet and depending on the kind of bowel cancer chemo that you have, you may get a cold sensitivity. Most, the majority of people probably do get cold sensitivity in their hands.

Which means that you can’t touch anything cold, or you get like very, very, very strong pins and needles and or little kind of electric shocks in hands. So even walking around Marks and Spencer touching food and taking things out of your fridge, touching door handles, even sitting on cold toilet seats, you know, things like touching cold toilet seats, those will affect your hands and give you little kind of like almost shocks in your hands.

And I found that it’s really weird. Actually, I could remember one day I was I made myself a smoothie and went to lift it, and I just dropped on the floor. And it was so strange that I just couldn’t quite coordinate my hands.

I still have neuropathy, more so in my hands because I kept my feet very, whether this helped or not, I don’t know. But I think it did that, I kept my feet really warm during the chemo infusion, and I did take gloves with me. I came kitted out every chemo session I came kitted out and the nurses would always laugh and say how long are you staying? But I had, like everything I had gloves with me, I had warm boots. I had a blanket. I had all sorts of stuff with my, snacks. I had lukewarm water, tepid water.

Practical tips for managing cold sensitivity:

• Keep warm! Get some cosy slippers and clothes and consider using gloves to keep your hands and feet warm.
• Certain things may be very cold to touch, consider placing extra pairs of gloves near the fridge to remind you to wear them or in your handbag/coat for when you are out.
• Talk to your stoma care or oncology nurse if you’re experiencing burning sensations or tingling in your hands and feet.

Chemotherapy can make you more sensitive to cold objects and food or drinks. Listen to Kathy’s experience on adjusting to life during periods of cold sensitivity.

A new chapter after chemotherapy

I have never seen my stoma as a negative, though I know for others the journey towards acceptance can be much more difficult. For me, from day 1 it got rid of my cancer. Because of my stoma I am here and I am so grateful for that.

Cancer is really awful and even now I’m not positive every day, but it has made me view life in a different way. Life is precious and it has changed my outlook, I no longer do the things I don’t want to, I do the things that make me happy and I appreciate all the little things.

I wish I could tell myself a year ago how life would be now. How adjusted I am to everything and how positive life is. Even to be writing this piece to hopefully inspire and help others going through similar. I’d have told myself “No way!” but here I am, and I am focused on raising awareness. I just want to share what I have learnt along the way and my life with a stoma.

I hope you reading this can look at me and realise it will be ok, it takes adjustment, and your body will change but you will get there. It’s a new way of life but it doesn’t stop you from doing anything you want to.

I always say, it would be boring if we were all the same. We all have quirks and one of mine is my stoma. It’s just a part of me now.