Category Archives: My Battle with Bowel Cancer

Adjusting to life with a stoma bag

I could faintly hear a voice saying, “Wake up Karen, wake up,” and as I opened my eyes I could see I was in the recovery room. “Everything went well,” I was reassured, “and now we’re taking you back to the ward.” I nodded, feeling my eyes close once again.

Once we were back on the ward I could tell that I was hooked up to all kinds of machines and I felt like I had been punched in the stomach. It was around nine o’clock and so I fell back into a sleep.

I woke up in the middle of the night, something wasn’t right, I felt down my right side, it was sodden, well everything was, my gown and my sheets were drenched. I thought the worst, “I’m bleeding out,” and I looked for the alarm button but couldn’t find it. Luckily, the lady opposite me was up out of her bed and so I asked her to fetch somebody for me, which she duly did.

Two nurses came, one was a huge man, they took one look at me and gasped. On closer inspection they discovered that my stoma bag hadn’t been closed at the bottom and so all the waste was going straight through. So the male nurse gathered me up in his arms, (yes, he was that strong!) and sat me down next to the bed while the other nurse stripped the bed.

I was past caring as the male nurse wiped me down, carefully avoiding all the tubes and changed my gown, I just stood obediently half asleep, waiting to be lifted back in bed.

The next morning the stoma nurse visited me. I hadn’t really looked at the bag and to be honest, I wasn’t sure that I wanted to and when I told her about the leaking stoma bag she said, “Well, that’s a great introduction to having one!” She showed me how to empty it into a bowl while I was laying in bed and said she’d be back in a couple of days to show me how to change the bag. I wasn’t really looking forward to that, but I knew it was something I would have to get used to.

As the days went on I became more confident in handling the stoma bag, I still had to empty it in a bowl, so that the nurses could record the flow and sometimes it made me feel a bit queasy but overall it was okay.

The stoma nurse showed me how to change the bag, which entailed measuring the stoma and cutting a hole to fit it, cleaning it, cleaning the skin around it and putting it on so that it sat nicely on your stomach. It does feel good when you have a new bag on. (I never thought I’d say that!)

I spent the next two weeks in hospital (which I will go into more detail in a separate blog) and during that time me and my stoma got to know each other a little better each day. I was on a low fibre diet and things like sweeetcorn, peas, skins on potatoes, skins on fruits, nuts, seeds, spicy food, are all a total no no. The menu at the hospital was:

I was discharged by the stoma nurses after seeing them three times and showing I could change a bag by myself and it became routine emptying it, day and night.

I was given a bag of supplies provided by a company called Fittleworth, which are of no cost, so you just telephone them when you need some more supplies. There are lots of different stoma bags available, so if you can’t get on with one, there’s always another to try. I was having trouble with red skin around the stoma, so they changed the bag to a more raised one and that is much better.

So, when I was discharged from the hospital, me and my stoma went home, did it go well? You’ll find out in my next blog about Life At Home With A Stoma Bag…

An Unplanned Operation

In the days following the colonoscopy, I began to feel unwell, having trouble going to the toilet, feeling very tired and having to drink all the time.

We went to a Carol Service in Winchester Cathedral but I missed most of it as I was sat on the toilet in the deep bowels (!) of the cathedral. I let Phil run wild with the Christmas decorations, putting up decorations that I normally left in the boxes, but I was too tired to argue and just laid on the settee watching him, biting my tongue.

I missed Christmas events because I simply felt too poorly to go and would lay in bed after I’d finished my work (I work from home) and take an hours nap, but still feel tired when I woke up.

I went for a CT scan, where they had the usual problem of inserting a cannula in my arm, my veins don’t like it and magically disappear at the sight of a needle! That went okay, the feeling of having wet yourself at one point during the scan sure felt weird!

Then the symptoms stepped up a notch, I felt extraordinary tired, I felt hot, I felt cold, I uncontrollably shivered, even though I was under the duvet fully clothed with a jumper on. Once I was tempted to phone for an ambulance, but I had an appointment with the consultant the next day so I decided that I would tell him instead.

We arrived for the consultation and everything seemed to be going well until I mentioned the pain in my stomach and the feverish symptoms and the consultant decided that I needed an emergency CT scan to see what was going on.

I was admitted to a hospital bed to wait for my CT scan, it was about 7 PM at this time. We decided it was best for Phil to go home because who knew what time I would be taken down, so he left waiting for the call to come and collect me.

I went down for my second CT scan and then had to wait for the result.

I was told that the tumour had perforated and that was why I was in a lot of pain, I was to be transferred to the Surgical Unit and prepared for an operation. I was moved to the new ward at 2 AM, dozing on and off until the morning.

I was visited by the consultant, who I know now was Mr West and he explained to me what he was going to do. He was going to give me a stoma bag so that the poo will bypass the tumour and not infect it more, then they were going to pump me full of antibiotics.

I had a visit from a stoma nurse who marked on my stomach where the stoma was going to be placed, she explained what it did, but I didn’t really take it all in. Hannah, the Macmillan nurse came and spoke with me, but again, I can’t remember much about what was said.

Unbeknown to me, the consultant had phoned Phil and told him to come over to the hospital to see me before I went down for the operation as it was pretty serious, they didn’t know what they were going to find whilst operating.

After seeing Phil and putting those delightful stockings on, I was taken down to the theatre, I was shaking, not from a fever this time, but from nerves. The operating staff were lovely, making me relax before I drifted off…

The Colonoscopy

The day before the colonoscopy I had to take some laxatives to clear my bowels, not that there was much in them as I hadn’t had much to eat in the previous few days. The Screening Programme sent me a package containing sachets of Klean prep to be taken at 9 AM, midday, 3 PM and 6PM with one litre of water.

I managed to force down the first lot, but at midday the thought of drinking another litre was frankly vomit inducing. But, I tried and every mouthful came back up much quicker than it went down. This wasn’t gonna happen, so I phoned the Screening Programme to explain what was going on. The lady informed me that there was another product I could try which was called MoviPrep and that it was more palatable than Klean, not a lot, but a bit. I was willing to try anything at this point and so she said she would bring it round to my house, which was unbelievably kind of her.

So, after some advice to dilute it with a juice (not blackcurrant) and drink it through a straw, I powered through and managed to complete the course of treatment.

The next day I arrived at Southampton General Hospital, said goodbye to Phil and ventured up to the Endoscopy Department. After filling in a questionnaire about my health (I had already gone through this via a telephone call a couple of days before), I was led into a room.

After signing a waiver in case anything went wrong, a cannula was inserted and I was taken to the treatment room.

I think it struck me there and then when I was laying on the treatment table that this could be serious. They asked if I would like to watch what was happening and I said that I would, so they moved the screen closer to me.

I watched and all seemed to be going well until I noticed a change in the atmosphere, things got a little serious and they moved the screen further from me, I guessed things weren’t as straightforward as I’d hoped.

After the colonoscopy I was taken to a recovery ward where one of nurses said to me that the doctor would like to speak with me and my husband about his findings. I knew then why this was and I laid in the bed staring blankly in front of me, dreading the moment when I saw the doctor.

We were led into a small room where the doctor, the lady from the screening programme and a Macmillan nurse were waiting for us. My heart sank as I saw the Macmillan nurse, confirming what my suspicions were. The doctor pulled no punches, he told us they had found a tumour and he had done this job long enough to know that it was cancer. They were sending off a biopsy but he was going to go ahead and get things in motion as there was no point in waiting for the result of the biopsy.

The doctor and the lady from the screening programme left and we were sat with the Macmillan nurse, I looked at Phil who was in tears and I started to cry as well, we couldn’t believe it was happening.

The Macmillan nurse was super supportive, explaining next steps and handing us some brochures, reassuring us and answering any questions we had.

We left the hospital in a bit of a daze, knowing that the hardest part was still to come – telling our children and family and friends what we had just found out.

The very beginning…

I have thought long and hard about writing this blog about what has happened to me in the last six weeks, to be honest it seems like I’m talking about somebody else, it’s all still a bit surreal.

I spoke to friends and family who all encouraged me to share my experiences in the hope that it might help somebody else who is going through the same tough time as I am.

I can remember the very first time I was in terrible pain, my stomach felt like there were knives inside carving me up. It was the afternoon of the Queen’s Platinum Jubilee Bank Holiday, I was in tears with the pain and so we went to a walk-in clinic, but typically as I waited to see the doctor the pain subsided. When the doctor examined me he couldn’t find anything wrong, put it down to a virus and prescribed me some diarrhoea sachets.

A few days later my doctor phoned me up, he did sound concerned and told me that if I had the pain again to go and see him straight away, this did worry me a little but as I wasn’t in pain anymore I forgot all about it.

Skip forward three months and we are going on a cruise in America. I wasn’t feeling that great, I had a stomach ache and found myself sitting on the toilet far more frequently that I ever did before. My poo varied from healthy to slimy to containing some blood, but I put it down to stress: preparing for the holiday, getting work done before we went, etc.

I can remember that whilst we were on the plane the stomach pain got worse, I couldn’t face any food and couldn’t concentrate on watching a film or reading a book. For the first three days of the holiday I wasn’t feeling good, sticking to bland food (such a waste with the wonderful food that was on offer), but I felt it would be better for me.

Then the pain stopped and I started to eat the lovely food and I put it down to being able to relax on the ship and taking it easy.

Once home, there was a bowel cancer screening kit waiting for me, I wondered if this was a sign, of course I had Googled my symptoms and also the symptoms of bowel cancer, but I never for one moment thought that was what I had, thinking it would be IBS or maybe even piles.

So I duly did my sample, noting that there was blood in the poo and thinking to myself, “That’s a good one to send them, hopefully they’ll tell me what’s wrong.”

About a week later I got a letter from the Bowel Cancer Screening Programme to say that my kit result showed that further tests were needed. I had to have a colonoscopy to detect if it was bowel cancer or not, or whether it was polyps which would be removed during the colonoscopy.

I had the date of my colonoscopy: 22nd November, 2022, to say I was nervous is an understatement.