It is estimated by the charity Crohn’s and Colitis UK that the disease affects about one in every 650 people, roughly 500,000 people.
Maddie Ewins 26, from Lancing was diagnosed with Ulcerative Colitis nine years ago.
She says she had lived with the disease for a year before that due to misdiagnosis.
She said: “I gradually became more and more ill, feeling constantly fatigued and suffering severe blood loss, weight loss and abdominal pains.
“I was really scared what this may mean and thought it would eventually go away by itself.
“Eventually it reached the point where I couldn’t ignore it anymore. After multiple GP appointments and being told I was suffering from indigestion, we paid to go privately.
“I was referred for a colonoscopy and managed to transfer back to the NHS.”
A colonoscopy led to an immediate diagnosis of Ulcerative Colitis and Maddie was put on steroids, which saw her at one point taking 28 tablets a day.
“I am now coping well on a self-injecting Biologic drug called Adalimunab and Mesalazine tablets,” she said.
A report by Crohn’s and Colitis UK and IBD UK found that a quarter of people waited over a year for their diagnosis, 41 per cent visited A&E at least once before diagnosis and 12 per cent visited three times.
For everyone with Crohn’s and Colitis, almost three quarters (72 per cent) of admissions to hospital were an emergency.
The report notes that this should not be the norm for people with Inflammatory Bowel Disease (IBD).
The main symptoms of IBD are: diarrhoea, cramping pains in the abdomen, tiredness and fatigue, feeling generally unwell, loss of appetite and loss of weight, anaemia (a reduced number of red blood cells), and mouth ulcers.
Some people with IBD, particularly Crohn’s, may develop complications, including: strictures. This is when there is ongoing inflammation and then healing in the bowel which may cause scar tissue to form. This can create a narrow section of the bowel, called a stricture. And fistulas, an abnormal channel or passageway connecting one internal organ to another, or to the outside surface of the body. These are more common in people with Crohn’s Disease.
Martyn Linke, 45, from West Wittering was diagnosed with Crohn’s aged 29.
He had been going to the doctor for 18 months complaining of stomach issues.
It was initially diagnosed as appendicitis but turned out to be a perforated bowel. He was diagnosed with Crohn’s while recovering in hospital.
He said: “People are not that aware of what it actually is and just think it is like irritable bowl syndrome (IBS), which it isn’t any thing like apart from stomach pain and bloating.
“Crohn’s can cause blistering in the bowel and digestive tract, which can lead to perforations and also the complications with Crohn’s are really severe.
“It impacts my life greatly as I always need to plan times away from the home as I never know when I need the toilet.
“I have to constantly make sure that where I go has facilities or they are nearby.
“I also struggle to carry out things that I used to as since I have been diagnosed with Chronic Fatigue Syndrome as a side effect of my Crohn’s I cannot always carry out physical activities that I would like to and quite often are so tired that I will fall asleep when I am sat on the sofa.”
Crohn’s and Ulcerative Colitis are lifelong diseases of the gut.
Other types include Microscopic Colitis, Indeterminate Colitis and Crohn’s Colitis.
There is no known cure for Crohn’s or Colitis, once diagnosed people often face a lifetime of fluctuating symptoms and remission, medication and, in many cases, major surgery.
Both are often considered invisible illnesses, as the impact cannot be seen on the outside.
Maddie, said: “The symptoms that impact my life most of all are loss of blood as I then become anaemic and suffer with chronic fatigue. This really impacts my day-to-day life as I feel exhausted a lot of the time and my job is quite physical. I also suffer quite a bit from joint pain.
“A lot of the time people make comments that I don’t look like I’m an ill person which I find difficult as I don’t feel that way internally.
“Individuals also don’t know that much about the illness so I find it difficult explaining why I’m so tired and drained.”
Martyn added: “Crohn’s is a hidden disability that people do not understand properly. As such people do not appreciate the impact that it has on the person suffering.
“The amount of dirty looks and comments that I have had when exiting a disabled toilet which I am entitled to use is amazing and people need to be less judgemental of people affected by hidden illnesses and maybe life would become easier and not as embarrassing for suffers.”
The charity report found that lifetime costs for IBD are comparable to heart disease and cancer, yet IBD is not taken seriously, well-known or understood, particularly the effects outside of the gut, such as extreme fatigue, severe pain, and the mental and emotional toll of living with a chronic condition.
In the survey 89 per cent of people reported they found it hard cope with having Crohn’s or Colitis over the previous year.
Martyn said: “If anyone suspects that they have Crohn’s then they should seek medical advice as soon as possible rather than putting it off.
“The diagnosis may not be the quickest or easiest process as it can be quite hard to diagnose but the effects of a mis-diagnosis or no diagnosis like I had is definitely not worth it as it causes long term issues as they say once you have had one Crohn’s related operation the chance of requiring more are greatly increased and a bowl resection like I have had three of is a major operation with a long recovery time and there are only some many operations you can have before you end up with a permanent stoma.”
A stoma is an opening in the tummy where the end of the colon is attached, a pouch can be placed over the stoma to collect your stools.
The survey found that people with Crohn’s and Colitis can’t get specialist treatment and care quickly enough when they need it.
The charity is calling for everyone with Crohn’s and Colitis to have faster access to specialist care and advice when they need it.
For more information about IBD UK, visit ibduk.org
And for charity Crohn’s and Colitis, visit, crohnsandcolitis.org.uk