“The Joy and Realities of Crohn’s Disease, Amidst Thoughts for Jonny Edgar”

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When news broke that Red Bull junior driver Jonny Edgar was being forced to sacrifice his Formula 3 campaign with Trident due to his worsening Crohn’s disease, a very real pang of sympathy came across me.

And I should know all about it. It’s been here with me for over thirty years.

Just imagine for a moment a long pool of water. It is crisp, it is clean, it is cool to the touch. Now open your mouth and between your lips, place a funnel and into that funnel, pour the contents of that pool and let your body fill and fill and fill.

The cool refreshment lasts only moments though and is very quickly replaced by increasing discomfort, as your body battles the surging water by bloating and bulging, while rivers press against your insides.
The water finished, your body now is unsettled, and every move brings only further discomfort and now nausea. You feel only unease and a desire to be sick, knowing for certain that no real relief is coming.

And then, your body takes a match and sets you on fire.

Deep in the pit of your stomach, the burning sensation sears – but don’t try to cry, or to wail, because often your body won’t let you. The pained sensation spreads with fearsome terror, tearing outward and ripping through your chest, robbing you of breath to the point where you can only scream through your eyes.
In an attempt to deflect the burning sensation, you will reach out a hand to grab at something, anything will do, if only embed focus and distract from a heated light-headedness.

With new fixation attained, you will breathe very heavily, but for a time that is all that will come out until – eventually – your body becomes normalised to the pain. Only now will your vocal cords signal and even then, only the most pathetic wail will raise and as you whimper, you may weep. Soon, you will feel everything and nothing and from the anguish comes numbness – you will become fog.

The hands in front of you will seem empty and distant and once light feet become stony pillars, while spinning heads pirouette, forcing you to a chair, a bed, the floor, or your knees. Often, I have felt everything and nothing while on my knees.
When it finally subsides, you will be exhausted – so wiped to the world, you can only wish to sleep and to dream.

Only then, hold your fingers tight and hope the arthritis doesn’t pinch too much, while episcleritis renders eyes wet and red.

That, to me, is Crohn’s Disease.

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*As adapted from crohnsandcolitis.org.uk, Crohn’s Disease is a condition that causes inflammation of the digestive system (also known as the gastrointestinal tract or gut), which affects the body’s ability to digest food, absorb nutrients and eliminate waste, in a healthy way. Inflammation is the body’s reaction to injury or irritation, and can cause redness, swelling and pain.

Crohn’s Disease is one of the two main forms of Inflammatory Bowel Disease (IBD) and is sometimes described as 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). In many people the disease runs a benign course with few flare-ups, while other people may have more severe disease. Crohn’s Disease is not infectious.

As well as affecting the lining of the bowel, Crohn’s may also penetrate deeper into the bowel wall causing abscesses and fistulas (abnormal tracts or passages between organs such as between two sections of bowel, or the bowel and skin).

Crohn’s is a very individual condition, and some people may remain well for a long time, even for many years, while others may have more frequent flare-ups. Symptoms may range from mild to severe, and will vary from person to person; however, the most common symptoms during a flare-up are:
Abdominal pain and diarrhoea: Sometimes mucus, pus or blood is mixed with the diarrhoea;
Tiredness and fatigue: This can be due to the illness itself, from the weight loss associated with flare-ups or surgery, from anaemia (see below) or to a lack of sleep if you have to keep getting up in the night with pain or diarrhoea;
Feeling generally unwell: Some people may have a raised temperature and feel feverish;
Mouth ulcers;
Loss of appetite and weight loss: Weight loss can also be due to the body not absorbing nutrients from the food you eat because of the inflammation in the gut;
Anaemia (a reduced level of red blood cells): You are more likely to develop anaemia if you are losing blood, are not eating much, or your body is not fully absorbing the nutrients from the food you do eat. Anaemia can make you feel very tired.

As well as that, Crohn’s can cause the following issues:
Joints: Inflammation of the joints, often known as arthritis, is a common complication of Crohn’s Disease;
Skin: Crohn’s can also cause skin problems. The most common skin problem is erythema nodosum, which consists of raised tender red or violet swellings 1.5cm in diameter, usually on the legs. More rarely, a condition called pyoderma gangrenosum, which starts as small tender blisters or pustules, which become painful, deep ulcers. These can occur anywhere on the skin, but most commonly appear on the shins or near stomas. Another skin condition associated with Crohn’s Disease is Sweet’s Syndrome, where tender red nodules appear on the upper limbs, face and neck, sometimes with a fever;
Eyes: Eye problems affect some people with Crohn’s. The most common condition is episcleritis, which affects the layer of tissue covering the sclera, the white outer coating of the eye, making it red, sore and inflamed. The two other eye conditions linked with Crohn’s are scleritis (inflammation of the sclera itself) and uveitis (inflammation of the iris). These conditions are a lot more serious and can lead to loss of vision if not treated;
Bones: People with Crohn’s are more at risk of developing thinner and weaker bones;
Kidneys: People with Crohn’s Disease have an increased risk of developing kidney stones. This can be due to inflammation in the small bowel causing fat malabsorption, so the fat binds to calcium, leaving a molecule called oxalate free to be absorbed and deposited in the kidneys where it can form stones. Symptoms of kidney stones include pain, nausea, vomiting and blood in the urine.
Liver: Some complications are related to the liver and its function. About one in three people with Crohn’s develop gallstones. These are small stones made of cholesterol which may get trapped in the gallbladder, just beneath the liver, and can be very painful. Some of the drugs used to treat Crohn’s (for example, azathioprine and methotrexate) may affect the liver;
Blood circulation: People with Crohn’s are more than twice as likely to develop blood clots, including DVT (deep vein thrombosis) in the legs, and pulmonary embolisms in the lungs.

[Living with Crohn’s] depends on the severity of your condition and whether your disease is in a quiet or active phase.
With medication, many people with Crohn’s have mild and infrequent symptoms of diarrhoea and pain, and their illness may not affect their lives very much. Most people follow a course of intermittent relapses (flare-ups) with periods of well-being (remission) in between, when they are able to lead a full and complete working and social life. Less commonly, some people have more frequent or continuous symptoms in spite of medical and surgical treatment and have to adapt their lifestyle considerably.

At present there is no cure for Crohn’s, but drugs, and sometimes surgery, can give long periods of relief from symptoms.

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