My diagnosis was just the beginning...
Writer Fiona Parker on learning to live with inflammatory bowel disease
Before I discovered I had ulcerative colitis last April, I’d never heard of it. I knew a little about Crohn’s disease, which is similar, because my grandmother had suffered from it later in life and had to have surgery and a stoma bag.
But as a relatively fit and active 54-year-old, the news came as a shock.
Last summer I started having an uncomfortable bloated feeling in my stomach after meals, sometimes accompanied by stabbing pains. It came on gradually so at first I put it down to something I’d eaten.
Then I noticed small amounts of blood when I went to the loo. I thought I’d better play it safe and see my GP who prescribed cream. But it got worse.
My tummy became more painful and my once-regular loo habits became very unpredictable. I started to dread going, fearing what I might find. As time wore on, I began to feel tired and foggy headed and struggled to keep up with work, friends and everyday activities.
ANXIOUS
Then the second lockdown happened and suddenly the friends part wasn’t such a problem, but my symptoms were getting worse and by now were making me very anxious.
I returned to the GP who ordered a series of tests, including a calprotectin test to detect levels of intestinal inflammation. Blood tests came back fine, which was a relief as it ruled out anything immediately life-threatening, but my inflammation levels were sky high – around 4,000, when the norm is 50.
My GP suspected inflammatory bowel disease and asked me to arrange an endoscopy and colonoscopy. Easier said than done, as anyone who’s had to book any kind of medical appointment during the pandemic will appreciate.
It took me several days to get through to the gastroenterology department at Imperial Healthcare Trust and then I was informed the first available appointment was not until April. It was still only January, so I endured another four miserable months of discomfort, on top of the generally increased levels of anxiety around Covid.
IBD is the umbrella term to describe chronic disorders that involve inflammation of the digestive system, including ulcerative colitis and Crohn’s. It’s believed around 500,000 people are living with some form of IBD in the UK.
Ulcerative colitis causes inflammation and ulcers along the lining of the large intestine, or colon, and rectum. Crohn’s is characterised by inflammation of the lining and deeper into the digestive tract.
It’s not known precisely what causes IBD and genes are believed to play a part, but experts believe it occurs when the immune system responds incorrectly to environmental factors. Similarly, stress isn’t thought to trigger the disease but it can certainly worsen the symptoms, which include abdominal cramps, diarrhoea, extreme tiredness and weight loss. At present it is incurable, with doctors seeking to bring about long periods of remission so those who have it can enjoy a near-normal life. But a severe
IBD flare-up can cause the patient to be hospitalised.
“Once I have the diagnosis and get the medication, I’ll be fine,” I told myself. So, I breathed a sigh of relief when
I was informed my case was mild to moderate and that it should improve with an anti-inflammatory agent taken in the form of a suppository. I was put under the care of a specialist IBD team of
‘‘ Treatment is not an exact science and involves a lot of trial and error
nurses at Imperial and given a helpline number to ring if I experienced a flare. “Great. Now I can get back to normal,” I thought. Or as near normal as you can get in the middle of a pandemic. But – and it’s a big but, as I was about to find out – it wasn’t as simple as just popping a pill. Treatment for IBD is not an exact science and involves a lot of trial and error, both in regards to the medication used to reduce the inflammation and the foods that can trigger a flare-up. The list of foods that make the symptoms worse differs for everyone, but most often include high-fibre produce, vegetables of the brassica family such as broccoli and cauliflower, pulses, dairy produce, nuts and whole grains. Anything you’d normally think of as healthy, basically. After a week or so of taking the suppository, things seemed to improve. The bleeding stopped and the swollen-feeling reduced so I gradually started to reintroduce more fibre into my diet as instructed. But then the symptoms slowly began to return, eventually triggering a full-blown flare-up while I was on holiday in the New Forest.
I was determined to make the most of my break, but during the day I struggled to do all the activities we had booked, including paddle boarding and a cycle ride. The evenings were spent on the loo with severe diarrhoea, before falling into bed completely exhausted. Not much fun for me or my partner, Bill.
When I returned home to London the situation had worsened to the extent I was just passing blood and, terrifyingly, seemed to have no control over when I needed to go. I contacted the IBD nurse and another round of tests followed, after which I was also prescribed an oral anti-inflammatory agent.
I attempted to get my diet on track by reading up on gut health and ordering a specialist cook book to prepare healthy meals. Despite the new pills I was experiencing nausea, headaches and a bone-aching fatigue that was interfering with my quality of life.
I’d looked forward to a weekend away at the seaside with some of my oldest girlfriends for months. One, an ex-River Cafe chef, had made its signature Chocolate Nemesis cake as a special treat. OK, I might have overindulged on the Nemesis a bit, but when I returned home, far from feeling rejuvenated, I felt as though the life had been sucked out of me.
Surely, this wasn’t how life was going to be from now on?
A conversation with my consultant reassured me that it’s not.
She recommended I stop taking the oral tablets, which could be causing side effects, and outlined further treatment options that may involve a different anti-inflammatory agent, steroids and immunosuppressants.
I am also experimenting with fermented foods, such as sauerkraut and kimchi and prebiotic yoghurts – available at most large supermarkets – which are meant to enhance the good bacteria in the large intestine. I’m trying to combat the tiredness with gentle exercise.
My partner and I took up in-line skating during lockdown and although my progress has been slower than his, I really enjoy it.
I also do yoga and breathing exercises, which helps reduce stress.
I’m slowly coming to terms and learning how to live with my diagnosis. I find smaller portions easier to digest, while I’ve tried fasting to give my digestive system a rest.
CAREFUL CHOICES
I find the best way to not eat anything for 12 to 16 hours is by skipping breakfast for one or two days a week. But eating in a restaurant can cause some anxiety and I need to choose carefully. For now at least that fish and chip supper or Friday night curry is off the menu.
Luckily for me, I don’t drink alcohol so that’s one issue I don’t have to worry about, but it’s recommended that IBD sufferers limit their intake.
It’s also a good idea to think about the toilet situation when you’re out and about to make sure you’re never too far away from one. And the next time I’m offered a delicious cream cake, I’ll politely pass and not suffer for two days because I greedily scoffed the lot.
I’m learning to appreciate the good days and cope with the difficult ones. If I’m tired I’ll cancel any plans and rest. And if I choose to eat something naughty, then I know I’ll just have to put up with not being very well for a couple of days. This is what works for me right now, although I do appreciate it is a lot more difficult for those who have a more severe form of illness.
And there is one benefit at least – I’ve lost a couple of pounds!
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I overindulged on the cake and felt like the life had been sucked out of me
■■For further information visit crohnsandcolitis.org.uk