CROHN'S DISEASE is a serious, potentially fatal disease that is very common in the Western World.
I was diagnosed with it in 1987/88 but thankfully have been in a good remission for a very long time.
Some of the young people who were diagnosed with it when I was are now dead!
WHAT IS CROHN'S DISEASE?
Crohn’s Disease is a condition that causes inflammation of the digestive system or gut. Crohn’s can affect any part of the gut, though the most common area affected is the end of the ileum (the last part of the small intestine), or the colon.
The areas of inflammation are often patchy with sections of normal gut in between. A patch of inflammation may be small, only a few centimetres, or extend quite a distance along part of the gut. As well as affecting the lining of the bowel, Crohn’s may also go deeper into the bowel wall. It’s one of the two main forms of Inflammatory Bowel Disease (IBD). The other is Ulcerative Colitis.
Crohn’s is a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission), as well as times when symptoms are more active (relapses or flare-ups).
WHAT ARE THE SYMPTOMS?
Crohn’s is a very individual condition – the symptoms vary from person to person, and may depend on where in the gut the disease is active.
The symptoms range from mild to severe and can change over time, too. However, the most common are:
- Abdominal pain and diarrhoea
- Tiredness and fatigue
- Feeling generally unwell or feverish
- Mouth ulcers
- Loss of appetite and weight loss
- Anaemia (a reduced level of red blood cells)
Find out more about the symptoms of Crohn’s Disease.
WHO GETS CROHN’S DISEASE?
We think Crohn’s Disease affects at least 115,000 people in the UK and millions more worldwide.
The condition is more common in urban areas and in northern developed countries – although it’s on the increase in developing nations.
Crohn’s is also more likely to appear in white people of European descent, especially those descended from Ashkenazi Jews (who lived in Eastern Europe and Russia).
The disease can start at any age, but usually appears for the first time between 10 and 40. Surveys suggest that new cases of Crohn’s are being diagnosed more often, particularly among teenagers and children.
It’s slightly more common in women than in men, and also in smokers.
WHAT CAUSES IT & IS THERE A CURE?
Despite a lot of research, we still don’t know exactly what causes Crohn’s Disease.
However, over the past few years major advances have been made, particularly in genetics. We now believe that Crohn’s is caused by a combination of factors;
- the genes you are born with,
- plus an abnormal reaction of your immune system to certain bacteria in your intestines,
- along with an unknown trigger that could include viruses, bacteria, diet, smoking, stress or something else in the environment.
There isn’t a cure at the moment, but drug treatment and sometimes surgery can do a lot to give long periods of relief from symptoms.
Read about the research we’re funding into the causes and treatment of Crohn’s Disease
WHAT TREATMENTS ARE THERE FOR CROHN’S?
Treatments may be medical, surgical or a combination of both. If your condition is mild, not having any treatment might even be an option. Some people may also find relief from their symptoms by altering their diet or going on a special liquid diet.
But your treatment will ultimately depend on the type of Crohn’s you have and the choices you make in discussion with your doctor.
Find out what treatments are available for Crohn’s Disease
CAN CROHN’S HAVE COMPLICATIONS?
Crohn’s sometimes causes additional health problems, which may be in the gut itself or can involve other parts of the body.
Complications in the gut may include strictures, perforations and fistulas
A variety of other health conditions can be associated with Crohn’s Disease, including:
- skin problems, such as mouth ulcers, blisters and ulcers on the skin, and painful red swellings, usually on the legs
- inflammation of the eyes
- thinner and weaker bones
- liver inflammation
- blood clots (including deep vein thrombosis)
- anaemia (a reduced level of red blood cells)
Around one in three people with IBD experience inflammation of the joints, usually their elbows, wrists, knees and ankles. More rarely, the joints in the spine and pelvis become inflamed – a condition called ankylosing spondylitis. This can cause stiffness and pain of the spine. Drugs and physiotherapy are used to treat these symptoms.
WHAT ARE THE CHALLENGES OF LIVING WITH CROHN’S?
Living with a chronic condition like Crohn’s can have both an emotional and practical impact on your life. There may be times when you have to make adjustments and take time to recuperate, for example, if you are having a flare-up. On the other hand, when you are well you may be able to live life to the full.
Most obviously, you are likely to see your GP and perhaps also your hospital IBD team quite regularly. It’s good to build up a good relationship with them, as that can make seeking and receiving treatment a less stressful process. My Crohn’s and Colitis Care has more information about how to work with your IBD team to get the best out of your care.
Flare-ups can be disruptive to relationships and work – sometimes you may need to cancel engagements and take time off when you are feeling unwell. It can be very helpful if you feel you can open up about your condition to those around you – your family, friends, work colleagues and employers. Telling particularly family and friends at least something about your illness may make them feel reassured and more able to give you the support you need.
Diet is considered a factor in Crohn’s Disease by many people with the condition. Although there’s no clear evidence that any food directly causes or improves Crohn’s, some people have found that certain foods seem to trigger symptoms or make them worse.
Generally, the most important thing is to eat a nutritious and balanced diet to maintain your weight and strength, and to drink sufficient fluids to stop you getting dehydrated.
Women with inactive Crohn’s usually have no more difficulty becoming pregnant than women without IBD. Also, for most women, having a baby does not make their Crohn’s worse.
If your Crohn’s is active, there is a slightly lower chance of conceiving. Your doctor should be able to help you to control your symptoms as much as possible, so it is important that you discuss your options with them if you are thinking of having a baby.
Crohn’s Disease can start at any age, including childhood. As many as one in three people with Crohn’s were under 21 when first diagnosed. Inflammation in the bowel can affect growth patterns and can lead to delayed puberty. Growth may also be affected by poor nutrition and prolonged use of steroids.
I believe that there is a BIG connection between stress and CD. I developed mine within 18 months of my big row and separation with Cahal Daly and the institutional Catholic Church.
I struggled along from 1987/88 to 1991 and then had to have surgery - a bowel resection.
It looked like I was going to have to have regular surgery and eventually end up with a stoma.
To avoid that I looked around the world for an alternative and found Professor John Hermon Taylor in London. He believes that CD is caused by a small TB bug that is common in milk and water. He blasted me with very heavy TB drugs and put me into remission for nearly 30 years.
Recently I have begun to have bother again and am back with the medics. Thankfully at present, my bother is on the medium scale.
I'm back on the research trail again and hope to blast CD out of my life again.
Nearly everyone I meet knows someone with CD. Anybody who wants more info is welcome to contact me on 0044 7488 374364 or firstname.lastname@example.org