Discussing your intestines and bathroom habits can feel embarrassing, but it’s one of the best ways to get support for Crohn’s and colitis while educating others.
There are so many misconceptions about these diseases, so it’s important that everyone is informed about what the facts are.
1. There are several warning signs to look out for
“There are many symptoms, but some of the big ones to look out for are blood in your poo, persistent diarrhoea, and needing to rush to the loo urgently and often, including in the night,” highlights Dr Rachel Ainley. “Other warning signs include unexplained weight loss, anal fissures, tummy pain, and tiredness that just won’t go away even with rest.
“You don’t have to have all these symptoms and you don’t have to have them all the time.”
2. The diagnosis process takes time
“Getting a diagnosis of Crohn’s or colitis is not always easy – you may need several tests, examinations and investigations,” recognises Ainley. “For some people, waiting times can be long.”
3. Symptoms often arise in flare-ups
“A flare-up is when symptoms come back and you feel unwell as your disease is active,” explains Ainley. “Everyone experiences Crohn’s and colitis differently, and some people have symptoms on and off all the time, without being too intrusive and then periods where they get much worse.
“Flare-ups can last anywhere from a few days to several months and you may have different symptoms during a flare-up than you had when you were first diagnosed.
“Signs of a flare-up can include loose poo or diarrhoea which may contain blood, urgently needing to poo, pain in the tummy area and generally feeling unwell.”
4. It’s an invisible condition
“One of the biggest misconceptions is that if someone doesn’t look sick, then they are okay,” says Ainley. “Crohn’s and colitis are invisible conditions because the symptoms aren’t visible on the outside.
“So, while someone may look fine, their intestines may be inflamed and ulcerated, they may be in excruciating pain.”
5. Everyone experiences these diseases differently
“Crohn’s and colitis can impact people in lots of different ways, everything from work to personal lives,” says Ainley. “It can affect what people can and cannot eat, although there is no particular diet that works for everyone with Crohn’s or colitis.
“What works for one person might not work for another.”
6. The causes are unclear
“We don’t yet fully understand what causes Crohn’s, but it happens when the body’s immune system goes wrong,” says Ainley. “Usually, the immune system protects the body, but in Crohn’s, it starts attacking the gut.
“We don’t know exactly why this happens, but it’s probably caused by a mix of genes, bacteria in the gut and something in the environment.”
7. Treatment options are expanding
“While there is no cure, there are all sorts of treatments for Crohn’s. This includes a whole range of medicines from steroids and immunosuppressants to biologic injections and infusions,” says Ainley. “New treatments are being developed and approved all the time, so the range of options is expanding, which can only be a good thing.
“Some people with Crohn’s will end up having surgery, and that might involve having a stoma fitted.”
8. Crohn’s can be life-threatening if left untreated
“If left untreated, Crohn’s can be life-threatening and that’s why it is really important not to ignore the symptoms,” stresses Ainley. “We know that it can be really tempting to brush some of the symptoms off, but it is so important to pay attention to your bowels and listen to your gut.
“If you know something isn’t right, go and see your GP. And if it isn’t getting better, keep going back until you get answers because we know that the sooner you get a diagnosis, the better.”
