Making Crohn’s and colitis visible

Crohn’s disease and ulcerative colitis – two forms of inflammatory bowel disease, are often seen as invisible illnesses. Living with these conditions can also feel like you’re walking into the unknown – filled with isolation and uncertainty. In the UK, Crohn’s & Colitis UK are on a mission during the 2016 awareness week (1st to 7th December) to increase public awareness of Crohn’s disease and ulcerative colitis, to ensure that the true impact of these debilitating conditions is made visible.

Crohn’s disease and ulcerative colitis are the two main forms of inflammatory bowel disease (IBD). Rarer forms of IBD include lymphocytic colitis and collagenous colitis, which tend to be grouped by the term microscopic colitis. In the UK, these conditions affect more than 300,000 people. IBD is a long-term condition, in which parts of the digestive system, including the gut, become inflamed. The location of inflammation depends on the type of IBD you have. However, IBD is largely a hidden disease, and one that causes stigma, fear and isolation. The exact causes of IBD are unknown; however, researchers believe that it may be due to a combination of: (i) the genes that you were born with; (ii) an abnormal reaction of the digestive system to bacteria in the intestine; and (iii) one or more unknown triggers, which could include viruses, bacteria, diet or stress.

What is Crohn’s disease?

“In Crohn’s disease, the inflammation can be found anywhere from the mouth to the anus. It can affect the entire thickness of the digestive tract and may also skip areas – meaning you could have inflammation near you mouth and also in your small bowel but no where in between.

The type of Crohn’s disease you have will depend on where the inflammation is found. You may be diagnosed with more than one type of Crohn’s disease.

Symptoms vary greatly from person to person depending on the type of Crohn’s disease you have, but typical symptoms include abdominal pain, diarrhoea, sickness, fatigue, mouth ulcers, anaemia, loss of appetite and weight loss.” IBDrelief

What is ulcerative colitis?

“In ulcerative colitis, the inflammation is found in the colon (large intestine) and the rectum. Small ulcers can develop on the colon’s lining, which produce pus and mucus. This can cause abdominal discomfort and frequent emptying of the colon.

The type of ulcerative colitis you are diagnosed with depends on where the inflammation is found.

Symptoms vary greatly from person to person, but typical symptoms include diarrhoea (often with blood, mucus and pus), abdomen cramps, fatigue, anaemia, loss of appetite and weight loss.” IBDrelief

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Credit: IBDrelief

What is microscopic colitis?

“As with ulcerative colitis, microscopic colitis affects the colon (large intestine) and rectum. However, the inflammation is not as visible as ulcerative colitis and the bowel lining appears normal. When a biopsy is taken inflammation can be seen under a microscope – hence it’s name.

Symptoms vary from the typical symptoms of ulcerative colitis, and often result in chronic watery diarrhoea, abdominal pain or discomfort, incontinence, weight loss, fatigue, bloating and wind.” IBDrelief

What is indeterminate colitis?

“The name indeterminate colitis is given when it’s unclear if a person has Crohn’s disease or ulcerative colitis. It is thought that around 15% of people with IBD are initially given this diagnosis.” IBDrelief

IBD is a rollercoaster of a journey

It has been eight years since I was diagnosed with Crohn’s disease – although in reality, I had been suffering with the symptoms of the condition for at least two years prior to the diagnosis on 21st April 2008. I’ll never forget that date. It was filled with a mixture of emotions – both relief and anxiety. Relief in that, after all this time, the doctors finally believed me. My parents already knew that something wasn’t right, but we went round in circles for several years, as different health professionals offered their opinions. Some insisted that it wouldn’t be Crohn’s disease, and there was no need for endoscopic investigations. One health professional was confident that the reason for all of my symptoms was constipation – and prescribed me quite a heavy dose of a laxative, which only made the entire thing worse! After finally making some progress, I went down to theatre for endoscopic investigations, after consuming several litres worth of laxative – by far the worst part of having the ‘cameras’! After waking up from the general anaesthetic, the doctor came into the side room, and sat on the bed. I can still hear the words he spoke. “Simon, I am so, so sorry. I never imagined that I would be telling you this. I’m so sorry to tell you that it is Crohn’s disease, and it is very bad.” I remember holding back the tears. This feeling of dread rose from deep inside my stomach. My first thought was, “What if I need a colostomy bag?” As a 14 year old already living with arthritis, I now had another challenge to face – and this once scared the living daylights out of me. I was petrified that I would need surgery. What would everyone think of me? I’d be this freak at school that nobody would want to know. It was completely overwhelming. That night, when I was alone in the side room, I cried. “Why me, yet again?”

Of course, as I’ve grown up, I can think more rationally, and I generally have a better understanding of Crohn’s disease – but still, I do worry about what the future holds. Around 70% of people with Crohn’s disease will require surgery at one point in their lifetime. Luckily, I’ve managed to avoid surgery so far, through the use of different medications and lifestyle changes. Looking back, the use of a polymeric diet immediately after diagnosis helped me to gain back some control over Crohn’s disease. For eight weeks, I basically drank eight protein-filled milkshakes. If it sounds appealing, trust me – it wasn’t! All forms of food and drink (except water) were banned. It was so difficult! I’ve never been a fan of milk (ironically, I’m now lactose intolerant), and although the first drink was okay, getting the second down was pretty awful. After being discharged, I returned home and did a phased return to school – although watching other people eat food felt pretty cruel. My mum and dad tried to help at the time by eating salads – I wasn’t a fan back then! However, this experience did show me that I do have willpower, and I kept reminding myself that if I could do it, that it would put me in good stead to get better. I try to remind myself of what I managed to achieve when I am writing my new year’s resolution!

Crohn’s, Colitis & Me – let’s make sure people aren’t on their own

This year, the Crohn’s and colitis community are raising awareness of the conditions through a variety of different events. Crohn’s & Colitis UK have planned a range of different activites for the awareness week, to engage different people and raise awareness. They’ve introduced these fabulous #CrohnsColitisAndMe posters, which shows when people were diagnosed, the number of medications they’ve tried, the hardest things about living with the disease and the things that get people through the bad days. You can see mine below!

Crohn's, Colitis & Me

I can only ask that you do your part in raising awareness of Crohn’s disease and ulcerative colitis, by sharing this post, and by sharing the amazing work of Crohn’s & Colitis UK, IBDrelief and the heartfelt stories shared by people living with these conditions.

You can also do your bit by signing up to the accessible toilet sign campaign. A major anxiety for people living with a serious health condition, like Crohn’s disease or ulcerative colitis, is being refused toilet access or being confronted about why they are using a disabled facility. Of course, this is wrong and we need to raise awareness that while a person might look ‘okay’ on the outside, they may be facing a daily challenge with a serious medical condition and urgently need to use that ‘disabled’ or ‘accessible’ toilet. Both Asda and Morrisons are now fixing new accessible toilet signs in over 900 stores across the UK. Through this simple but effective act, they are helping to ensure that customers with a medical condition can use the toilet facilities without fear of criticism or embarrassment. These small, but effective steps forward, would not have been possible without organisations like Crohn’s & Colitis UK, or empowered people with IBD who share their experiences to shape the world in a positive way.

“I have Crohn’s Disease and had to urgently use the accessible toilet. On exit, a member of staff told me I shouldn’t be using that toilet, but when I told her I had a disability she just laughed. I emailed a complaint and their apology and customer service was even worse! ” Crohn’s and Colitis UK supporter

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