The future after bowel cancer diagnosis

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.

A little bit of what your fancy – keeping healthy during chemotherapy

Chemo is one of the toughest drugs and that the body can have and can be trying to fight, so your poor little body is doing a really good job at dealing with all of those really harsh drugs. So be kind to it.

My chemo started so soon after my stoma was created.

I was still getting used to food so I could eat and couldn’t eat, so I did have to be pretty careful with foods eating high fibre foods meant that my output was a lot higher. They tell you in the hospital to eat low residue foods, but they’re all the foods that you think “I really don’t want to eat”. It’s all the foods that you think is having very little nutrition when you’re trying to build yourself up during, during your chemo treatment, during your cancer treatment.

The other side effect is because I had a lot of acid indigestion, I couldn’t eat enough food or the types of foods that I want to eat to keep my system moving.

So I wasn’t always getting as good nutrition as I needed to at that point, which again wasn’t keeping the stoma working as well as it could.

But so I did try to introduce more high fibre foods and my porridge that I love in the mornings. I wasn’t going to not have my porridge! And I just kind of dealt with the implications of it. Which just meant changing the bag or draining it, cleaning it out and emptying it just a bit more frequently during chemo treatment. Till my system got used to having more of those high fibre foods.

One of the areas to be really conscious of when you’re going through chemo with a stoma is to ensure that you’re not getting dehydrated because with bowel cancer, chemo sometimes you’re sensitive to the cold and cold drinks. So you don’t tend to drink enough.

So you’ve got to be conscious of and careful to make sure that you’re drinking enough so you’re not getting dehydrated because the chemotherapy can cause constipation. And then if you’re not drinking enough as well, that can lead to even more constipation, which can be really uncomfortable and can cause all sorts of other problems.

So just try to make sure that you’re drinking even more so that, we’re keeping our system working and it’s really good just to flush out all those chemicals also. So you know, keep drinking as much water as you can.

My belief is that a little of what you fancy does you good. So a healthy, balanced diet for us with a stoma just try to have a healthy, balanced diet, maintain a healthy balanced diet. Sometimes it’s easy just to eat some of those really low residue, bland foods. But just to try and avoid irritating the stoma or having too much output. But having a really a good just healthy balanced diet is the best thing to do during chemo and drinking lots of water.

Practical tips for diet and hydration:

• Don’t feel like eating? Try to keep up a varied diet even if it’s in small amounts. You may find that eating 4-6 smaller meals throughout the day is better than 2-3 larger meals.
• Avoid eating late – try not to eat large meals late in the evening to decrease the amount of output overnight.
• Keep a journal – make a note of the effect certain foods have on your stoma.
• Chew well – help your digestive process by chewing your food into smaller pieces, especially foods like peanuts, or other solids that could cause a blockage.
• Looser output can lead to dehydration so it’s important to keep your fluid levels up. If you are at all concerned, speak to your stoma care or oncology nurse right away.

My colorectal cancer diagnosis

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.

My bowel cancer diagnosis

I was diagnosed in January 2023 with bowel cancer with Metastasis into the liver, and was scheduled to have a bowel resection on 16th of February. I was told I would have a resection with the possibility of a stoma if things looked different during surgery, so I was preparing myself for either. On the 14th of February I ended up having my bowel surgery to remove the cancer due to a complete bowel obstruction, and was made aware by my surgeon I would require a stoma, due to the obstruction.

A stoma nurse came and spoke with me the day before surgery, she marked my stomach up as to where my stoma would be going and also discussed the products available for my stoma.

After my surgery I wanted to see my stoma as a positive, as once that section of my colon was removed that meant the cancer was also going from the descending colon – in my eyes my stoma was saving my life.

After surgery I awoke and saw my stoma, yes, it was a little different, but aren’t we all different? It would be a little boring if we all were the same!

Experience living with her colostomy so far

That’s the mindset I started to take in relation to my stoma. A couple of days after surgery I decided to name my stoma. I named it after Moira from the sitcom ‘Schitt’s Creek’, as she likes to be dramatic and in the early days so did my stoma.

After I felt more alert post-surgery, the stoma nurse came to see me again and we discussed how to change my stoma bag etc., she also explained the products available to me.

I have a little six year old, and I wanted to be as open and honest to her, as children that age are extremely inquisitive and ask a lot of questions.

Real life

From the day I got my stoma, and when I got home, I showed her the stoma in her time and discussed in a child-appropriate way why I needed one. I told her part of my bowel (where our poop goes) was broken and the Doctor has to remove it, so now I have something called a stoma.

She now calls it ”mummy’s tummy bum” and in all honestly I love the name. We had a good laugh when she first called it that. She also finds it “pretty cool that mum poops from her tummy bum”. Children really are brilliant.

She also received a bear called Buttony Bear (from my stoma nurse in the hospital) along with a book, which was lovely and helped break the ice. My husband was able to read the book to her and discuss more.

Speaking with people who understand how to use the products and also how stomas work, in my opinion makes me feel seen, heard and understood. Especially at a time when having a cancer diagnosis is a lot to get your head around, then add in receiving a stoma.

I’m now nine months post stoma surgery and I’ve been getting on brilliantly with my stoma, it does take some adjusting to, I would be lying if I said it didn’t. I have to make sure I’ve always got a good supply of products when out and about, knowing where the restrooms are in case I need to change my pouch.

My bowel cancer diagnosis journey

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:

I’m still here – embracing change after colorectal cancer

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.

In this final instalment from Kathy, she reflects on her entire journey. From a dark place after her surgery and coping with diagnosis, to accepting her stoma and thriving today – it takes time, energy and lots of hope. No matter where you are in your colorectal cancer diagnosis we hope you have learnt some tips throughout this series and have found a hope to embrace your future.

Kathy’s bowel cancer journey

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.

Kathy McAllister shares her story of the shock of bowel cancer diagnosis followed by treatment including colostomy formation and chemotherapy. The first in a series of videos from Kathy as she explains her journey and how she has overcome obstacles along the way.

Supporting a loved one with a stoma during chemotherapy

You are so important to support a loved one through their cancer journey. Litte small touches can make huge differences, but there’s a lot for you to understand as well. Here are some things to consider:

Educate yourself

If you don’t already know, learn what a stoma is and how it impacts daily life. Why not check out these articles to understand the background and some challenges?

Encourage communication

Hearing about a cancer diagnosis can be difficult for you too but try and listen actively to your loved one, giving them space to open up in their own time and share their thoughts, expressing their feelings and concerns.

Allow privacy

That being said, respect your loved one’s privacy. They may not be ready to talk or share details about their stoma, give time and space and allow them discretion for changes so they do not feel self-conscious.

Offer help

Be direct with your offers. Instead of asking how you can help, be specific:

• Can I cook you meals?
• Do you need anything from the supermarket?
• Where is your lawn mower and let me cut the grass?
• Can I take you to your next appointment?

Think of small things that might help – a direct offer can be easier to accept than trying to think of an exact task when asked.

Be flexible

Stoma routines can be unpredictable – especially during chemotherapy plus your loved one is going though a lot of change. Understand things can change last minute and try and be flexible and accommodating as needed.

Embrace optimism

This last one we say knowing that each person’s journey will be different so being full on optimism isn’t going to be the right tone for every conversation. You can however remain positive and caring, actively listening and encouraging. We have called this series Thriving Beyond Today – going through a cancer diagnosis, stoma creation and subsequent chemotherapy is a lot for anyone to deal with, it is life changing – but it is not life limiting, in fact read through the rest of this series to see how others have thrived with their stoma.

It’s ok to need support

One of the biggest challenges for me over the past year has been the anxiety and worry I have faced with my diagnosis the whole way through to caring for my stoma. It has been so much change and an awful lot to think about. Plus particularly when you’re in hospital or chemo infusion you can feel like a robot connected to machines with lots being done to you – the lack of freedom was hard.

When I first got home from the hospital, I was really worried about my stoma itself. Was I going to get a blockage? Why was it going in and out? Is it going to prolapse? Why was it changing in colour? It was genuinely a rollercoaster, but I was really thankful to have the stoma care team available to call during the week to chat about any issues. It was funny though as the nursing service is only available weekdays until 5pm on Friday and you can be sure something would happen at 5:30! Was always the way!

My community stoma care nurse is amazing, she always asks what worries I have so we can deal with them together. For instance, at first, I was concerned about running out of bags but she got me what I needed and I have a top-up drawer now. That took any anxiety around that away. I have had times when I’ve experienced pancaking and ballooning, I have had leaks, but I know I can talk to her and we can work through it. Now I know what to do if something occurs – it’s a learning curve but there’s always a solution.

My partner and family have been so supportive too – I feel incredibly lucky. My partner in particular would do anything to help me, even if that’s running out to the supermarket for a very specific item and back again if it’s the wrong one! He says to me that he loves me for me and that the bag means I’m still with him. His attitude has really helped in my acceptance of my stoma too. I’d be lost without them all.

During chemotherapy, everything tasted horrible to me – including drinks which was really difficult as you’re so conscious of dehydration and how this affects your output. I persevered and kept trying different things and in the end, I found in the end lemon tasted ok. One thing everyone has said to me is eat whatever you want as you don’t always want to eat during chemotherapy. Take that with a bit of caution though, after losing so much weight during my first hospital visit, I have put a lot back on over the last year, so my stoma has therefore grown with my body. I still get pre-cut pouches but now cut them slightly bigger myself with my changing stoma. It’s something to be conscious of – your stoma changes as your body does so be aware of this with your bags.

I would also encourage you though to go for clothing that is comfortable for you, especially comfy trousers. As your body changes, stretchy, easy to wear clothes that support you are really important.

The other thing I found during chemo was I had neuropathy in my hands and feet. At the time this felt like fresh pins and needles, really sharp and worse when I was cold – my hands would often spasm and seize up so I couldn’t move my fingers. So, I would always make sure I was as warm as possible wherever I was and would make sure to warm hands up or change my bag in a warmer environment.

Finding my tribe during chemo

Support is really important during your journey with both cancer and through chemotherapy. I’ve been incredibly lucky with my friends and family who have supported me throughout everything, but I’ve also been open with them in sharing I have a stoma which has helped. Especially my husband, his acceptance of my stoma has helped me adjust to my new life much more easily – it’s just a part of me now.

You will need a support network you can trust – your tribe – who will look out for you and who you can trust. From your stoma care nurse through to your friends and family and even those at your home delivery service you can just pick up the phone too and check on something.

The little gestures will mean so much to you. One friend was so thoughtful in bringing me warm soup as she knew I wasn’t managing to eat cold foods. Another showed up at my door with milk as I’d joked on social media I had run out. It was the little things that meant the world to me.

I am also so grateful and lucky that I have a close friend who has had a stoma for 18 years and I was able to ask her lots of questions or just check were things ok. It’s listening to others who have had that lived experience that is so valuable. Finding a community of others with a stoma – as you will find a lot of trial and error till you work out what is right for you from diet through to your product choice.