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

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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:

  • Already cut bag
  • Dry wipes
  • Adhesive remover

Amy
@mybowelcancerjourney

Listen to your body with chemotherapy fatigue

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The tiredness that you have during chemo, you just feel tired. You know you do feel very 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, cosy, comfy jogging suits and it’s just because when 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 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.

Changing pattern of output with chemotherapy

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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, for 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 that’s 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.

Choosing what stoma products worked for me

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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.

Amy
@mybowelcancerjourney

The future after bowel cancer diagnosis

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A year ago, I wouldn’t believe what was in store for me. I have been a vegetarian since I was 11, I am only just in my forties, fit, active, and I don’t drink or smoke. I never thought bowel cancer was coming my way, but it did, and I was lucky to have found it in time and am now a year down the line.

I have a love / hate relationship with my stoma – and that’s ok! It’s there, it saved my life, I don’t fully hate it but I sometimes struggle to be grateful for it too. I haven’t named my stoma either, though I know many people do. It just doesn’t feel right for me and that’s the important thing, being true to you and your feelings and not feeling pressured to behave or act a certain way. If you don’t want to name it, you don’t have to.

Also embrace the little wins! I LOVE being able to use my RADAR key and the disabled shower in my local gym – they are so much better (it has a on/off tap and not a timed push button 😊)!!

I’m currently having a series of colonoscopies to remove polyps from the part of the bowel above the tumour where the doctor hadn’t been able to get to before. This happens through the stoma. The hardest part of this is managing the bowel prep solution. The actual camera through my stoma is far easier than the ‘other entrance’.

Right now, I have been given a date for a stoma reversal but I’m actually really nervous about it. Will it go OK? How will my bowel ‘behave’ afterwards? It feels like its taken a long time to get normality and some level of fitness back after the chemo and operation and I don’t want to lose this again. I felt really confident with my stoma and know what to expect and can manage the little challenges. The unknown of a reversal and adapting to something new or there being issues is something I need to weigh up. Plus, am I ready to give up those better showers at the gym?

Regardless of when my reversal is, what I do want to do though is continue to do is find others who have gone through similar to me and encourage us all to speak up and normalise it. Bowel Cancer happens (literally s*** happens!) and I want those who are going or have gone through it to know they’re not alone.

Summa

A new chapter after chemotherapy

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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.

Amy
@mybowelcancerjourney

Kathy’s bowel cancer story

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I’m Kathy and I come from Lisburn in Northern Ireland and for anybody who doesn’t know Northern Ireland, that’s just about 10 miles outside of Belfast, which I’m sure you’ve heard of.

So I was diagnosed with stage 3 bowel cancer at the end of 2019 and I was completely blindsided.

I was super healthy, super fit, so I thought, and probably in the best shape of my life at 48 years old. I played tennis as much as I possibly could. I ran four or five days a week.

I was in the gym most days, so I was completely blindsided when I found out that I had bowel cancer and it was totally unexpected.

Every one of my friends said to me, how did you get bowel cancer? Because I was so fit and so healthy or so I thought. So, it can happen to anybody, which is why I’m very, very passionate about helping other people through their bowel cancer experience and encouraging people to go early and get diagnosed.

I had my operation in April moving into May 2020 and I started chemo in July.

Just had to wait until all of my wounds had healed properly before I started. And at that point I was still getting used to a stoma.

So, it usually takes about six months, at least, for a stoma to get into a regular routine. So, mine was still all over the place and I think for a lot a lot of bowel cancer patients chemo comes very quickly off the back of having the operation, so you’re not used to having the stoma yet.

You’re still trying to get to grips with leaks and just really what you can eat and what you can’t eat. I suppose just the just the routine and I guess just the trauma really of having it.

So, when chemotherapy then starts with all of the side effects that chemotherapy can bring, it just throws you into a whole different world of having to manage the stoma very differently again.

When you’re going through chemotherapy treatment, every day can be very different, and every day is very different, and there will be days when you feel really rubbish and there’ll be days when you just don’t feel like getting out of bed and that’s fine. Stay in bed. You know, stay in bed, watch TV, sleep, do whatever. But then the next day might be a really good day and you’ll feel like you do have energy and you feel a bit more back to yourself and you’ll be able to go out and do walks and do some gentle exercise and start to build yourself back up again, so you know things change, things pass and just try to keep as positive.

Hopefully take some inspiration from people like myself and other people who have come through that journey. And I’ve been from one extreme in the darkest places to now and seeing life in a completely different way and having my eyes opened. Just being grateful for every single day that I have now.

I’m still here – embracing change after colorectal cancer

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So, for me, acceptance was a massive turning point for me, the acceptance of having the stoma at the beginning I thought, how could I live with this?

What can I do? I can’t play sport and I can’t actually pinpoint a time or explain what changed, but I just, I do remember when it was. It was a lovely sunny Friday evening, and the birds were singing, and the windows were open and I just thought, I’m still here. I’m alive. And I’ve got the chance now to live my life however, the slate has been wiped clean. I can just do whatever I want with my life now because I’ve got it back and I’m so lucky to be here.

So, is life the same? No.

Is it better in many different ways? Yes, absolutely. And that’s because I’ve accepted actually some of the stuff that I can’t do with the stoma is brilliant because it’s stuff I didn’t want to do anyway.

So, working a 9 to 5 job, slogging my guts out all day. That’s great. I now don’t want to place myself in a situation like that. Can’t really. So that’s a bonus, you know, and it kind of makes me it, it just makes my lifestyle has changed, but it I change it to suit me.

Now because I’m back to doing so much that I can do. And I used to do I don’t take as much time to step back and reflect. What achievements? You know that those are actually really big achievements. And when I do it almost kind of, I blow my own mind and think, wow, you know, when I think back two years ago, I thought I’d never leave the house with a stoma, I thought I would never leave the house with it again. But it it’s your life with a stoma, which can be whatever you want it to be and it just, you know, you’re your only limitation with it.

So even though, when you start chemotherapy, you will have a huge list of side effects to sign. And you look at it and you just think those all look horrendous. And chemo, yes it isn’t a walk in the park, and it is difficult and it is tough.

But you know overall going through chemo I found it was not as bad an experience as I expected it to be, or thought it was going to be. Exercise was my lifeline during all my cancer treatment.

When you’re going through chemo, you can feel like everything’s being done to you and it’s out of your control, but if you are exercising, it’s a way that you can take some control of doing something that’s positive for you and your body and something that you can really own and do and have a purpose.

Or if you have other hobbies, then those will give you a purpose also, and there’s something that you can really own and take control of.

So having things to distract exercise is brilliant because it has physical changes in the body which cause mental changes, positive changes as well. But if you have other hobbies or activities that you enjoy doing that make you feel good, then keep doing those.

It’s not going to be a walk in the park, but you will get through it and that looking back, I was so terrified. And I have just taken a day at a time and just faced into everything and dealt with it and have come out the other side hopefully in a better place. There’s so much support out there it cancer is a big scary word, I believe we need to start to destigmatize the whole word cancer because immediately people hear they’ve got cancer it terrifies them. And your mind, your mental attitude to the whole thing is half the battle, if not more so, I would say I’d, you know, I don’t say stay positive lightly, but do things that try and distract you. Try to keep as much normality in your life as possible.

So, you know, I’ve done things that I would never have done before.

Having a stoma has it’s opened up so many opportunities and it’s been an enabler for me to do things and to live life in a way that I wasn’t living my life before.

I was living my life in a way that I thought I should live my life, whereas now I live my life in a way that I choose to live my life and I want to live my life. So, you know, I say to people.

And again, I don’t say this lightly, but I say that having cancer is both the best and the worst thing that’s ever happened to me.

Hopefully take some inspiration from, people like myself and other people who have come through that journey. I’ve been from one extreme in the darkest places to now and seeing life in a completely different way and having my eyes opened and just being grateful for every single day that I have now.

Just remember

Be kind to yourself. Things will change with a new stoma and going through cancer and chemotherapy will be hard. You are stronger than your think you are, and you will get through this with the support of others.

Give yourself time. Things will take time, so patience is needed. Particularly as your routine settles there will be setbacks and changes, but it will get easier with time. Don’t be hard on yourself and take each day as it come.

My bowel cancer diagnosis journey

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In May of 2021, I was diagnosed with bowel cancer; however, my symptoms began in October of the previous year.

One morning, as I prepared coffee and awaited the kettle’s boil, I experienced a sudden and intense stabbing pain in my lower abdomen. The intensity of the pain brought me to my knees. This episode lasted approximately 20 seconds, after which I managed to rise and dismiss the lingering discomfort and carried on with my day. In the ensuing months, these stabbing pains intensified and occurred with greater frequency. Additionally, I began to suffer from constipation, bloating, and persistent fatigue and I could feel an internal lump at the site of the pain.

I consulted my GP on three separate occasions, each time being assured of my healthy appearance. Despite two physical examinations, the initial diagnosis was stress-induced constipation, attributed to the illness of my father who had been hospitalized with COVID-19. A four-week course of laxatives was prescribed, which proved ineffective as my symptoms persisted and worsened.

Upon completing the laxatives, I revisited my GP practice. Subsequently, I was diagnosed with Irritable Bowel Syndrome (IBS), prescribed additional laxatives and Buscopan, and advised to adhere to a FODMAP diet. My condition deteriorated over the following fortnight, culminating in an inability to leave my bed due to excruciating pain and fatigue. This prompted a return to my GP, where I insisted on a blood test, as the prescribed medication had not alleviated my symptoms. The doctor suggested continuing the current treatment while awaiting blood test results, to which I agreed, with the understanding that I would inform them if there was any improvement.

The blood tests revealed elevated inflammation markers, prompting a repeat test that confirmed the initial findings. A stool sample was requested, and I was referred to the Emergency Outpatient Department at Lister Hospital in Stevenage for further investigation. There, a nurse conducted another blood test, and a doctor, upon reviewing the results, dismissed the IBS diagnosis and scheduled a colonoscopy. The procedure uncovered a tumour, and subsequent biopsies led to a diagnosis of bowel cancer.

I understand that talking about symptoms related to bowel cancer can feel uncomfortable or even a little scary. It’s not easy to discuss personal health issues, especially those that involve such private matters. But I want to reassure you that your doctors are professionals who care deeply about your well-being. They’re there to support you, not to pass judgment.

Please remember that your health is invaluable, and being proactive about any unusual signs can be life-saving. Bowel cancer, when detected early, can often be treated successfully. You deserve the peace of mind that comes with taking care of yourself, and you’re not alone in this.

Infographic from Bowel Cancer UK:

Mohammad
@colon_cancer_and_me

My colorectal cancer diagnosis

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In 2023 I was diagnosed with bowel cancer and it was completely unexpected.

I had been a teacher for 20 years and had just decided to leave and look for a new challenge, a change of scene. I’d booked in to see my GP as I had been experiencing a bit of bloating and as my mum has Ulcerative Colitis I was just sensitive to what it could be. It was just after Deborah James (BowelBabe) had passed away and I’d asked the doctor, purely for peace of mind, to check for any signs of bowel cancer. He’d laughed and said ‘You’re far too young’, but agreed to test me for it.

A week later the surgery called me up and booked me in for a colonoscopy. Of course, I was extremely nervous and after the procedure even apologised for wasting their time, assuming it was just peri-menopause as I was in my early 40’s. The consultant quickly explained how glad they were I’d come in; they’d found something. They had found a tumour – it was bowel cancer. I was so grateful that my mum had come with me to the appointment as telling family about my diagnosis was so hard. My eldest daughter had a friend whose mum had just died of cancer and we waited a few weeks- till I’d been staged and had a treatment plan – until we told them.

Everything moved very quickly, I had a CT scan to confirm the diagnosis and then I was referred to Macmillan Cancer for treatment within a couple of weeks. My treatment plan was due to be 4 rounds of chemo followed by surgery and another 4 rounds of chemo afterwards. My first session was fine, not pleasant but all ran smoothly. My second infusion however made me extremely ill, and I ended up in hospital. I was using the bathroom every hour, even though I was barely eating and although a doctor suggested it might be chemotherapy induced colitis it took 2 weeks for it to be properly diagnosed my steroids treatment to begin. After another week in hospital, I had stabilised and was able to go home however in those 3 weeks I had lost 3.5 stone.

At this stage I was feeling extremely low and fed up. I can completely empathise with those going through chemotherapy now and know the impact it can have on your mental health too. I just didn’t want to get out of bed. Luckily though I have a truly supportive family and my partner Simon is just amazing.

During this time, the focus was just on managing the colitis before cancer treatment was to resume but unfortunately, I had a blockage which meant I was in extreme pain and rushed to hospital for emergency surgery. It felt like the perfect storm, a mixture of the tumour and colitis parred the chemotherapy treatment, my bowels were all over the place. I woke up with after surgery with a stoma.

I had never had to stay in hospital before and had gone from a being fit and healthy to suddenly spending 3 weeks with colitis and 10 days in after surgery in a busy ward. It was a lot to deal with. The nurses were all really good, very busy but were wonderfully supportive. I luckily got to grips quickly with my bag and have had great support from community nurses too throughout my whole experience including through my chemotherapy cycles post-surgery.

I’m now through chemotherapy and have adjusted to life with a stoma – though I have started discussing a reversal with my doctor – more on that later! 10 months since surgery it has been a rollercoaster journey but one I couldn’t have done without the support around me. I love talking to others about my experiences and hearing theirs. Knowing I’m not alone is really important to me.

Summa