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Colitis, Cowboy Hats & Cameras

For this blog article, I’m sharing something that I find very difficult; it’s probably been the most challenging part of my cancer treatment so far. Writing about it feels much harder than writing about my cancer because, to be honest, it’s embarrassing. Some people may think I am over-sharing and I appreciate this, but it’s part of ‘my melanoma story’ and it wouldn’t feel right to leave it out. It’s had a significant impact on my every-day life and yet, apart from discussing it with the medical team looking after me, it’s not something that I would talk openly about – apart from those people closest to me.

Breaking the Poo Taboo

When I was first diagnosed, I followed Deborah James (Bowel Babe) on social media and listened to the podcast “You, Me and The Big C” that she was one of the presenters on. I admired her honesty, her attitude about living with cancer and how she raised awareness of the symptoms of bowel cancer. A big part of her campaign was to break taboos about poo in the hope that by talking more about it people would spot symptoms and get medical advice earlier. So, inspired by her, I am writing this blog article about poo – or more specially diarrhoea caused by colitis – to hopefully break a few taboos and to reach out to people going through something similar to say we aren’t on our own!

My two-year-old niece has recently decided she no longer wants to wear nappies, she wants to go to the toilet. When we play with her little `Peppa Pig’ character figures, the conversation soon turns towards one of them needing the toilet. We have had quite a few discussions about toilets, poo and wee-wee – after all, these subjects are very interesting when you are two years old. She asks me questions like: “Auntie Charlotte, do you have poo or ‘doo-doo’ in your tummy? Where does our dog’s poo come from? Can you draw some poo?” She recently asked me to draw a poo (we were drawing a picture of her dog) she passed me the brown felt-tip (I obviously drew a poo that on the Bristol Stool Chart would represent a perfect ‘4’).

It's ironic that as my little niece is abandoning her nappies, I - her 44-year-old Auntie – am sometimes having to use what I have called ‘Big Taboo Pants’ in my previous blog. Of course, they aren’t called nappies but ‘disposable underwear’ and words like ‘discreet’ are often used. In a society where we seem to only just be able to talk more openly about period products (and there is still a long way to go) talking about incontinence pads and pants certainly feels taboo.

I thought that at some point in my life I would probably have to wear some sort of incontinence pads - but I imagined this would be when I was much older. But at times this has been a reality of cancer treatment for me. It’s a reality for many others living with cancer, cancer treatment side effects and bowel conditions such as colitis, crohn’s and IBS and also those people suffering with bladder conditions.

My experience of immune induced colitis has made me feel anxious, at times isolated, embarrassed and worried about leaving the house. I know I’m not on my own in feeling this way.

My experience of Immunotherapy- Induced Colitis

I’ll be honest, when I began immunotherapy for melanoma I looked at the long list of side effects and saw that diarrhoea was mentioned; it was the side effect that I dreaded and hoped I wouldn’t suffer from. It is common side effect of my particular type of immunotherapy and so I wasn’t that surprised when it happened to me.

After my second treatment of ipi/nivo I was hospitalised with abdominal pain. I had diarrhoea and nausea but steroids seemed to keep things at bay. By the time I received my third treatment of ipi/nivo the diarrhoea was more severe – on average about 12 times a day but sometimes more. Some people have it much worse and I cannot imagine what this must be like. I didn’t want to leave the house, I didn’t actually want to leave the bathroom. I was hospitalised again for 2 and a half weeks. As well as the diarrhoea I was sick, completely lost my appetite (anyone who knows me will realise this is unthinkable) and I couldn’t hold down any food or water. I remember lying in my bed, feeling completely out of it due the anti-sickness medication, unable to properly communicate with my family, struggling to get to the loo because I was wired up to fluids and thinking I wasn’t far from my own personal version of hell. It may sound dramatic, but I was really struggling and I remember asking my mum if I was “proper poorly” because I have never felt so ill.

My mum, a retired nurse, was there for me throughout. As were my husband, dad and the medical staff. But it was my mum who cleaned and changed me and who hugged me when I felt so disorientated I couldn’t get myself to the toilet. At times, we sometimes managed to laugh about it all and made poo-jokes that my six-year-old nephew would find amusing. As a child of a nurse, I got used to the stories my mum would tell us about her work. Many times, she would tell us about what she had had to clean up. I knew about the Bristol Stool Chart before all this melanoma-treatment-shizz kicked off. It was only when I went through this first-hand that I truly really appreciate the job that my mum did, and I am so incredibly proud of her.

With a lot of care – especially from my consultant, my cancer nurse and the palliative care team– life did improve and the symptoms eased. As well as steroids, I received a treatment called Infliximab which can, as I understand it, help calm the immune system and reduce the inflammation in the colon which was causing the symptoms . Before I could have the infliximab, I had to have a ‘flexible sigmoidoscopy’ which is basically a camera to check what is going on in the lower part of your colon. I remember being wheeled into the room by the really lovely nurses, seeing the screen and thinking for the first time that I really had ‘hit a wall’ with all the scans and tests. I asked for a sedative and therefore remember very little about the procedure apart from wearing very attractive disposable navy blue shorts with a hole in the back. As the camera did show inflammation, I could start Infliximab. I remember feeling so happy to be receiving the treatment because I felt to weak.

The treatment was amazing and worked very quickly. I was back home after a few days. I felt incredibly weak – I was unable to stand for long, unable to walk properly and unable to climb the stairs without help. I was on a high dose of steroids which meant that I had high energy levels and my appetite had returned. Quite a few of my clothes didn’t fit as I had lost over one and a half stone in three weeks, but I could eat again and that felt amazing.

After a few weeks I did have another dose of Infliximab as symptoms reoccurred, but they weren’t as severe as before and the hospital staff were incredibly pro-active. I did have to endure the camera again – this time I managed without a sedative. The staff were so lovely and reassured me. The doctor explained how he could tell that there was colitis and that this time it was mild.

The hope now is that now I am on a single dose of immunotherapy each month, the colitis will settle. My anxiety remains quite constant.

Dignity and Diarrhoea

Across the health service, Dignity is a concept that is often spoken about. Questions like how can dignity be promoted and maintained are commonplace.

It’s something I struggled with, trying to keep hold of my dignity in such a ‘shitty situation.’ There are obviously things in place to maintain or promote dignity – the curtains between each bed for example, the use of ‘big taboo pants’ etc. But for me, my dignity was really challenged when I was sharing a bathroom with other patients. I had to save my diarrhoea in a cardboard tray (actually shaped like a cowboy hat) and place it by the side of the toilet so that a member of staff to take it away and measure. I remember crying to my mum when I realised that even though I had told the staff, a tray had been left there for quite a long time and meanwhile some of my fellow ward-mates had used the bathroom. On another occasion a patient and her relative announced how bad the smell was coming from the toilet and loudly complained to the staff. One evening the same patient announced to a support worker that she was fed up with the smell coming from the toilet. I overheard this and apologised (whilst trying not to cry) that my cancer treatment had caused colitis and I was so sorry. The lovely support worker came over to me and said that there was no need to apologise, that I had every right to use the toilet like everyone else, but I was still mortified. I heard another patient, in the next bed to me, talk to her husband about my toilet habits and how it was strange that I needed help in the daytime but at night, “Oh, then she doesn’t need all the help and attention, she can go by herself then!” I wanted to go to her and explain this was because they had been giving me steroids in the evening which calmed things overnight, but I just didn’t have the strength. It felt like my toilet habits were the talk of the ward. Looking back I’m sure they weren’t, but it really felt that way at the time.

Everyday Life

I guess I have to come to terms with the idea that I may be stuck with colitis for a while, maybe even forever. Of course, this is better than having melanoma, I’m fully aware of that. Without the treatment the melanoma would be having a party right now – and I don’t mean a lovely birthday style party with balloons and fairy lights – I mean the sort of party where a load of people turn up uninvited and trash the entire house. It does mean that when there is a flare up of symptoms, I have to learn how to manage and adapt. This does make me anxious – mainly that I will end up being “proper poorly” again, but I am learning that I need to tell the hospital of my symptoms at an early stage so they can treat me quickly. I’m also anxious about having symptoms when I go out – questions like, where is the nearest toilet? Is there a disabled toilet? I sometimes need to use disabled toilets because they give more privacy and because it is easier to clean and change in there if you need to.

On a few occasions when I have used a disabled toilet, I have had a few negative reactions from other people. On one occasion, I was in a disabled toilet and my mum was waiting outside for me. I heard someone say something about the toilet should only be used for people with disabilities, clearly questioning why I was in there. I could hear my mum saying that I was on cancer treatment and that people should be more understanding. Recently I went to see PULP in concert. There was a huge queue for the women’s toilets which were next to the disabled toilet. I needed the toilet urgently, my colitis had started to flare, so I used the disabled toilet. When I came out of there, I was faced with stares and shaking of heads by the women in the queue. I guess they looked at me and made the judgement that I didn’t look like I have a disability and therefore should not be using the disabled toilet. I didn’t have the courage to tell them why I needed to use that toilet, there were too many of them. I did have my Macmillan ‘toilet card’* and Radar key* in my hand in case any of them said something. The thing is, not every disability is visible and some of us need to use disabled toilets for the conditions we have and therefore we shouldn’t be judged or questioned.

So, there you have it, that’s a bit of an insight into the reality of my cancer treatment side effects and what it’s like to have symptoms that I feel are embarrassing to talk about . But it is important to talk about this and to share experiences because I know I am not alone.

* Macmillan can provide you with a toilet card for when you are out and about to help you ask establishments if you can use the toilet urgently

A radar key allows you to access to disabled toilets - I bought mine from

There are also apps which show you where the nearest toilet is one example is explained here

Image in this article is from Freepik


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