After almost two years of worsening stomach pain, Sam Launder was told he had irritable bowel syndrome (IBS). Then 27, he thought it was something he simply had to learn to live with.
But a year later the doctors discovered he had a far more serious condition, which meant Sam needed his bowel, including his rectum, removed.
He says now, however, he’s ‘in the best place I’ve been for a long time.’
It all started with more frequent bowel movements, about four to five times a day, as Sam, now 33, recalls. ‘At first, this didn’t worry me – I was fit, active and healthy, and was working in a busy role as a restaurant assistant manager.’
He also squeezed in going to the gym four times a week and competed in ballroom and Latin dance competitions.
‘But gradually, the frequency of needing to go increased to six to seven times a day, and so did the urgency – I had to run to the bathroom to get there in time,’ he says.
‘Still, I put off going to the doctors for a while because I had a feeling it might be IBS and that there wasn’t much that could be done,’ says Sam, a commercial director, who lives near Oxford, England, with partner Ellie, 25, and their two-year-old daughter Evie.
After several months of symptoms he saw a doctor.
After two years of worsening stomach pain and increased bowel movements, Sam was diagnosed with IBS by a doctor, 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 to drink plenty of fluid.
IBS is one of the most common gut conditions, affecting around 15 percent of adults in the US, according to the American Medical Association.
Despite its prevalence, there is no test for the condition. Instead, an IBS diagnosis is based on symptoms, and doctors will gather blood and stool tests to exclude conditions such as inflammatory bowel disease (IBD) and celiac disease.
‘You will not be diagnosed with IBS if you don’t experience its key symptom – abdominal pain,’ says Professor Anthony Hobson, a gastrointestinal scientist and clinical director at The Functional Gut Clinic in London.
‘But abdominal pain alone does not necessarily mean you have IBS.’
He adds: ‘The other most common symptom is bloating. Related symptoms include diarrhea, constipation or alternating bowel habit [i.e. experiencing both].’
‘Symptoms can often be relieved by a bowel movement, but not always,’ adds Professor Hobson.
‘The symptoms are usually exacerbated by eating certain foods that are more difficult to digest, such as onions, garlic, dairy products, fruits that are naturally high in sugar [e.g. apples] and high-fiber foods.’
Doctors often diagnose the condition without any test – this is not an issue, suggests Professor Hobson, unless there are ‘red flags’ when assessing a potential IBS patient, including unintentional weight loss, blood in stool/rectal bleeding, a family history of colon cancer, and new onset symptoms in patients over 45.
‘If any of these are encountered, some simple stool tests should be given to check for inflammatory markers to exclude inflammatory bowel disease [including ulcerative colitis and Crohn’s disease] and cancer,’ he adds.
As Sam’s symptoms progressively worsened he began to question his IBS diagnosis, he says.
‘If I went out, I had to work out where the nearest bathrooms were, avoided eating for long periods before travelling and would take a change of clothes just in case of an accident.’
But he adds: ‘When I read about IBS online, what I was dealing with sounded more severe. So I returned to the doctor – but was again told it was IBS.’
Around a year later, in early 2020, Sam started passing blood and had developed backache – this time the doctor referred him for a colonoscopy, where a tiny camera is inserted into the colon to inspect it.
This revealed he had ulcerative colitis.
‘I’d never heard of the condition and didn’t really understand what could potentially come of it,’ says Sam.
Ulcerative colitis causes the lining of the large bowel to become inflamed and sore, leading to painful ulcers – it’s thought the immune system reacts to bacteria that are normally harmless, mistakenly attacking the bowel lining and triggering inflammation.
A recent study suggests reports that cases of IBD, including ulcerative colitis and Crohn’s, are on the rise in the US – particularly among young people.
Some 100,000 people under the age of 20 now have some form of IBD, experts say.
Researchers believe 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 use 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 trigger the immune system to overreact,’ says Dr Rishi Goel, a consultant gastroenterologist at the New Victoria Hospital in London.
‘IBS is also a condition that usually affects people in their younger years, so it’s key to distinguish whether a patient has IBS or inflammatory bowel disease,’ he adds.
Irritable bowel syndrome is one of the most common gut conditions, affecting around one in five UK adults and around 15 percent of adults in the US. An illustration of a digestive system with IBS shows the affected large bowel in red
He explains that ulcerative colitis is usually characterized by diarrhea, pain and rectal bleeding, while IBS typically causes bloating, pain and changes of bowel habit but not bleeding.
‘Because some symptoms overlap, it’s not uncommon for sufferers to confuse these conditions – and it can also be a challenge for [doctors] when choosing investigations and making a diagnosis.’
Dr Goel says one check that’s particularly useful for distinguishing IBS from ulcerative colitis and other types of IBD is a calprotectin stool test, which looks for a protein that signals inflammation in the bowel.
‘IBS does not cause inflammation, so the test can help doctors tell the conditions apart,’ he explains.
‘The results can help guide whether further investigations are needed. If the calprotectin stool test is negative, IBD is less likely, but it does not completely rule it out.
‘[Doctors] should consider checking a fecal calprotectin test in patients presenting with IBS-type symptoms,’ adds Dr Goel.
He warns it’s important not to delay diagnosis of ulcerative colitis as ‘the inflammation can become more severe and affect more of the bowel. The condition may then not respond as well to treatment.’
He adds: ‘In Sam’s case, if he’d had early fecal calprotectin testing it may have raised suspicion of ulcerative colitis sooner and prompted further investigations.’
For three years after his diagnosis with ulcerative colitis, Sam was prescribed a number of medications – some given as infusions in hospital – to control the inflammation.
‘Nothing seemed to help, so I kept being put back on high doses of steroids [prednisolone], as it was the only thing that relieved some of the symptoms,’ he says.
But his doctors were reluctant to keep prescribing steroid medication because of the risks of long-term use, including weight gain and weakened bones.
‘At my worst I was running to the toilet up to 25 times a day,’ says Sam.
‘People asked me how I coped. I was very open about my condition at work and my team were aware. I managed to hold down my job by planning ahead and knowing where the toilets were.
‘But my social life was harder. I was constantly cancelling plans because I was embarrassed about suddenly having to rush to the toilet. It got to the point where it just felt easier not to go out.
‘I also dropped out of ballroom and Latin dancing, and stopped going to the gym.’
As a result of the steroids, he ballooned in weight from around 165 lbs to 253 lbs – and gained a ‘moon face’ caused by the way the drugs alter how the body handles fat and fluid.
Finally the inflammation became so severe that Sam’s consultant explained there was one option left: removing his colon (part of the large bowel) to prevent serious complications such as severe bleeding, a perforated bowel or dangerous swelling of the colon.
‘Ultimately there was no choice, I couldn’t continue to live as I was,’ says Sam.
In July 2022, he underwent the surgery: ‘I was in theatre for eight hours, longer than expected because part of my colon was in a far worse state than anticipated.’
Sam was given a permanent stoma, an opening through his abdomen to collect waste.
He recalls: ‘When I came round, I didn’t want to see it initially. But once I got used to fitting and changing the stoma bag, I felt massive 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’ve always been very self-conscious about the stoma 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 needed another operation to remove his rectum as long-term inflammation can increase the risk of cancer.
‘It’s known as ‘Barbie butt’ surgery because everything is stitched closed afterwards, leaving a smooth appearance,’ he says.
‘The recovery was incredibly difficult. I could only lie on my side or walk – I couldn’t sit, because the area was so painful after surgery.
‘I felt pretty low, shuffling around with a support cushion under my arm. I also had countless painful infections and regular bag leaks because of my stoma changing 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 had only recently turned one, and it was heartbreaking not being able to pick her up.’
He adds: ‘Now I’m feeling much more positive. I’ve started going back to the gym and have lost around 33 lbs.
‘I want to keep getting stronger for myself and so I can be as active as possible with our daughter.
‘It’s been a difficult 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 symptoms if they know something isn’t right and to keep pushing for answers.’
