After almost two years of worsening stomach pain, Sam Launder was diagnosed with irritable bowel syndrome (IBS). At 27, he thought it was something he would just have to live with.
But a year later doctors discovered he had a much more serious condition, which required Sam to have his intestines removed, including his rectum.
But now he says he’s “in the best place I’ve been in a long time.”
It all started with more frequent bowel movements, about four to five times a day, as Sam, now 33, remembers. ‘At first I wasn’t worried about it; I was fit, active and healthy, working in a busy role as a restaurant assistant manager.”
He also managed to hit the gym four times a week and took part in ballroom and Latin dancing competitions.
“But gradually the frequency of the need to go increased to six to seven times a day, and so did the urgency: I had to run to the toilet to get there on time,” he says.
‘I still put off going to the doctors for a while because I felt it could be IBS and there wasn’t much that could be done,’ says Sam, a commercial director, who lives in Abingdon-on-Thames with partner Ellie, 25, and their two-year-old daughter Evie.
After several months of symptoms, he visited his doctor.
After two years of worsening stomach pain and increased bowel movements, Sam was diagnosed with IBS by a GP, who told him to keep a food diary and avoid fatty and spicy foods.
Sure enough, the doctor diagnosed IBS and told him to keep a food diary to identify possible triggers, avoid fatty and spicy foods, and drink plenty of fluids.
IBS, or irritable bowel syndrome, is one of the most common bowel disorders, affecting around one in five adults in the UK.
There is no test for it. According to NICE guidelines, IBS diagnosis is based on symptoms, alongside simple blood and stool tests if there are red flag symptoms – to rule out conditions such as inflammatory bowel disease (IBD) and celiac disease (but more on this later).
‘You won’t be diagnosed with IBS if you don’t experience its main symptom: abdominal pain,’ says Professor Anthony Hobson, gastrointestinal scientist and clinical director of The Functional Gut Clinic in London.
“But stomach pain alone doesn’t necessarily mean you have IBS.”
He adds: ‘The other most common symptom is bloating. Related symptoms include diarrhea, constipation, or variable bowel movements [i.e. experiencing both].’
‘Symptoms can often be relieved by bowel movements, but not always,’ adds Professor Hobson.
‘Symptoms are usually made worse by eating certain foods that are harder to digest, such as onions, garlic, dairy products, fruits that are naturally high in sugar [e.g. apples] and fiber-rich foods.”
GPs often diagnose the condition without any testing – this is not a problem, Professor Hobson suggests, unless there are ‘red flags’ when assessing a potential IBS patient, including unintentional weight loss, blood in the stool/rectal bleeding, a family history of bowel cancer and new symptoms in patients over 45 years of age.
‘If any of these are found, some simple stool tests should be carried out to check for inflammatory markers to rule out inflammatory bowel disease [including ulcerative colitis and Crohn’s disease] and cancer,” he adds.
As Sam’s symptoms continued to worsen, he began to question his IBS diagnosis, he says.
‘When I went out, I had to find out where the nearest toilets were, I avoided eating for a long time before traveling and I would take a change of clothes with me in case there was an accident.’
But he adds: ‘When I read about IBS online, what I was dealing with sounded more serious. So I went back to the doctor but was told again it was IBS.’
About a year later, in early 2020, Sam started losing blood and experiencing back pain. This time the GP referred him for a colonoscopy, in which a small camera was inserted into the colon to inspect it.
This revealed that he had ulcerative colitis.
“I had never heard of the condition and didn’t really understand what could possibly result from it,” says Sam.
Ulcerative colitis causes the lining of the colon to become inflamed and painful, leading to painful ulcers. It is thought that the immune system reacts to bacteria that are normally harmless, accidentally attacking the intestinal wall and causing inflammation.
The charity Crohn’s & Colitis UK reports that cases of IBD, including ulcerative colitis and Crohn’s disease, are increasing in almost every age group – especially among young people aged 18 to 29.
Researchers believe that environmental factors such as diet, low fiber intake and antibiotic use may play a role in IBD, potentially affecting the immune system and the balance of bacteria in the gut.
The inflammation can cause symptoms such as diarrhea, abdominal pain, bleeding and an urgent need to go to the toilet.
There is no cure, but a range of treatments can help control the inflammation and manage symptoms.
‘Although it can occur at any age, ulcerative colitis usually affects people in their youth – possibly due to a combination of genetic and environmental factors that cause the immune system to overreact,’ says Dr Rishi Goel, consultant gastroenterologist at the private New Victoria Hospital in Kingston upon Thames.
‘IBS is also a condition that usually affects people in their younger years, so it is crucial to distinguish whether a patient has IBS or inflammatory bowel disease,’ he adds.
Irritable bowel syndrome is one of the most common bowel disorders, affecting around one in five adults in Britain. An illustration of a digestive system with IBS shows the affected colon in red
He explains that ulcerative colitis is usually characterized by diarrhea, pain, and rectal bleeding, while IBS typically causes bloating, pain, and changes in bowel habits, but no bleeding.
‘Because some symptoms overlap, it is not unusual for patients to confuse these conditions with each other – and it can also be a challenge for GPs when choosing tests and making a diagnosis.’
Dr. Goel says one check that is especially useful for distinguishing IBS from ulcerative colitis and other forms of IBD is a calprotectin stool test, which looks for a protein that signals inflammation in the intestine.
‘IBS does not cause inflammation, so the test can help doctors distinguish between the conditions,’ he explains.
‘The results can help determine whether further research is necessary. If the calprotectin stool test is negative, IBD is less likely, but this does not rule it out completely.
‘GPs should consider performing a fecal calprotectin test in patients with IBS-like symptoms,’ adds Dr Goel.
He warns that it is important not to delay the diagnosis of ulcerative colitis because “the inflammation can become more severe and affect a larger part of the intestine.” The condition may not respond as well to treatment.’
He adds: ‘In Sam’s case, if he had had a faecal calprotectin test early, this might have raised suspicion of ulcerative colitis earlier and led to further investigation.’
For three years after being diagnosed with ulcerative colitis, Sam was prescribed a number of medications – some of which were given as infusions in the hospital – to control the inflammation.
‘Nothing seemed to help, so I kept getting high doses of steroids [prednisolone]because it was the only thing that alleviated some of the symptoms,” he says.
But his doctors were reluctant to continue prescribing steroid medications because of the risks of long-term use, including weight gain and weakened bones.
‘At my worst I was running to the toilet 25 times a day,’ says Sam.
‘People asked me how I dealt with it. I was very open about my condition at work and my team was aware of it. I managed to keep my job by planning ahead and knowing where the toilets were.
‘But my social life was more difficult. I was constantly canceling plans because I was embarrassed about suddenly having to rush to the bathroom. It got to the point where it just felt easier not to go out.
‘I also gave up ballroom and Latin dancing and stopped going to the gym.’
As a result of the steroids, his weight increased from 75kg to 115kg – and he developed a ‘moon face’, caused by the way the drugs change the way the body uses fat and water.
Eventually the inflammation became so severe that Sam’s consultant explained that there was one option left: removing his colon (part of the large intestine) to avoid serious complications such as severe bleeding, a perforated intestine or dangerous swelling of the large intestine.
“In the end there was no choice, I couldn’t continue living as I was,” says Sam.
He underwent the operation in July 2022: ‘I spent eight hours in the cinema, longer than expected because part of my colon was in much worse shape than expected.’
Sam was given a permanent stoma, an opening through his abdomen to collect waste.
He recalls, “When I came over, I didn’t want to see it at first. But once I got used to trying on and changing the ostomy bag, I felt a huge relief.
‘Now for the first time in years I could leave the house without worrying about where the nearest bathroom was. I had freedom again.’
Sam adds: ‘I have always been very insecure about the ostomy bag and try to hide or disguise it wherever I can. I wear support belts, partly to make it less noticeable.’
In July last year, Sam had to have another operation to remove his rectum, as long-term inflammation can increase the risk of cancer.
“It’s known as a ‘Barbie Butt’ operation because everything is sewn up afterwards, leaving a smooth appearance,” he says.
‘The recovery was extremely difficult. I could only lie on my side or walk – I couldn’t sit because the area was so painful after surgery.
‘I was feeling quite down, shuffling with a support cushion under my arm. I have also had numerous painful infections and frequent bag leakage because my stoma changed slightly due to a hernia repair during the same operation.
‘It took somewhere between six and nine months before I finally started feeling like myself again.
‘My daughter was only one year old and it was heartbreaking that I couldn’t pick her up.’
He adds: ‘Now I feel much more positive. I started exercising again and lost 15 kg.
‘I want to become stronger for myself and be as active as possible with our daughter.
“It’s been a tough few years, but I’ve always tried to stay positive and be grateful for every day.”
He adds: ‘I hope my story encourages people not to ignore the symptoms when they know something is wrong, and to keep pushing for answers.’
