Chron’s Disease

My main problem with doctors.

Because I’ve had Crohn’s disease for most of my adult life I thought it might be a good idea and a help to others if I wrote about a few of my experiences. It may seem during this discourse that I have a problem with doctors, I don’t really, well, maybe a little bit but it is important to note that a lot of the problem with Crohn’s is that they don’t really know what causes it. My main problem with doctors is that while they don’t know what causes it they still need, in their heart of hearts, to give you a diagnosis. Difficult to give a diagnosis on something that you don’t know anything about. The other problem with doctors is that they know science which is fine but in my experience Crohn’s disease tends to be made up of different aspects of both mind and body, a fact which seems to get lost with many if not all doctors. This can make things difficult and in one particular instance extremely difficult.

The responsibility for your body and your health is ultimately yours.

It is very important to remember with Crohn’s disease or in fact any other medical problem you might have that neither medical science nor doctors are perfect. They do not know all of the answers. The responsibility for your body and your health is ultimately yours. I really don’t want to seem to be preaching but the point is that once you understand this you could save yourself a lot of problems. For 25 years now, maybe 30, I have been going to doctors whenever I got a flare up and for 25 to 30 years the diagnosis has always been that I had IBS; irritable bowel syndrome. I think possibly that I am not alone in this experience. You see, doctors tend to want to give you an answer to your problem which is understandable but the major problem here being that in the case of Crohn’s and IBS there is really no answer. In actual fact they don’t know what causes it, they don’t know what it is and that does cause problems. After the number of years I began to come to the conclusion that the IBS diagnosis I was getting was simply a way for the doctor to say yeah you got something but I don’t know what it is therefore IBS is as good an answer as any. During all this time I was never given anything to go on, no regimen to follow, no diets, no place to go to make it better. So, naturally as you do, I let it ride and this is what I mean by taking responsibility. I probably could have saved myself a lot of grief if I’d looked at it in a different way but I didn’t.
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The big Crohn’s disease flare up!

I was young, the flareups came and went and life went on. Eventually and not that long ago I was hit by the big one. The big flareup. I dutifully went to my doctor and he predictably gave me the same answer that I have gotten for all these years namely irritable bowel syndrome. OK, fine I took his prognosis. For the treatment of irritable bowel syndrome the accepted wisdom is to fill your system with fiber and that’s what I did. You know, whole-wheat brands, fiber supplements, high-fiber fruit and veg and so on. The big problem here was that in fact and unbeknownst to me at the time, I don’t have IBS, I have Crohn’s disease and the treatment for Crohn’s in this instance just happens to be the complete reverse to the treatment of IBS. Crohn’s disease necessitates no fiber, none, not a bit of it and boy what a problem there in lies. If you think of a balloon being filled with air then that was my bowel. All that lovely fiber had to be pushed through a very small hole and it just weren’t doing it. In all fairness to my doctor he is a very nice man but unfortunately not a terribly good doctor. The long and the short of it was that for about six months, four to five days a week, 12 hours a day I rolled around on my bed in complete agony. Imagine eating too much, getting too full and all the discomfort involved and then multiply that by 100. I do not exaggerate. Again, if I had half a brain in my head I would’ve gone to a different doctor. Admittedly with the English medical setup that can be difficult but ultimately I should’ve explored different avenues. My point being, again, it’s all up to you.

Major surgery was scheduled!

Anyway, eventually I could no longer take it and called the night clinic. I talked to a doctor who, after hearing what was happening, actually did a house call (which I don’t think they do anymore) and with in five minutes said I needed to go to hospital which I did and after which I was immediately given a bed and diagnosed with a blocked bowel. Major surgery was scheduled for the following week. Crohn’s disease is not a fatal illness so I don’t want to frighten anyone but this time, because of my own and my doctors mistakes I think I came really close to popping my cloggs for real. Just goes to show you. Again if you have a problem of this sort get as much different counsel as you can and doctors are not perfect, they are human. I have to say in closing that I do not in any way want to frighten anyone about Crohn’s disease. It’s can be difficult but it can also be for the most part not a real problem and / or problems can be avoided. There are now many ways that can lessen the effects of Crohn’s disease and make it very livable. So, don’t let me scare you. I will be writing up various experiences that I’ve had, some bad and some funny because there can be a funny side to Crohn’s. There is also a psychological aspect to Crohn’s that I have yet to see anybody discuss or even mention. I will be talking about its at another time as well. But, right now I have got to get back to my studio.

Crohn’s disease

Crohn’s disease is a condition that causes inflammation of the gastrointestinal tract (gut). The gut consists of the oesophagus (gullet), stomach, and small and large intestine.

Crohn’s disease can affect any part of the gut. However, it most commonly occurs at the lower end of the small intestine, known as the ileum. Typical symptoms include, pain, ulcers and diarrhoea. Daily medication can be taken to relieve the symptoms of, but sometimes, surgery to remove part of the gut, may be required.

Approximately 1 in 1,500 people have Crohn’s disease, and the condition affects slightly more women than men. It can develop at any age, but usually starts between the ages of 15 and 40.

The outlook for people with Crohn’s disease varies depending on which part of the gut is affected, and the severity and frequency of the symptoms.

The majority of people experience moderate symptoms from to time to time and most (80%) will require surgery at some point. Rare complications, such as a perforated gut, can be life-threatening.

Symptoms

The symptoms of Crohn’s disease occur when the wall of the affected part of the gut becomes inflamed. The inflammation often causes one or more of the following symptoms:

• pain - different people experience different severities of pain. The site of the pain will depend on which part of the gut is affected. The condition commonly occurs at the lower end of the small intestine (ileum), and so the pain will often be on the lower right side of the abdomen,
• ulcers - a raw area of the gut wall that may bleed. If it does, you may notice blood in your stools (faeces). Mouth ulcers are also common.
• diarrhoea - can vary from mild to severe, and may contain mucus, pus or blood. You may feel a frequent need to go to the toilet, but a lack of anything to pass (tenesmus) is common,
• feeling generally unwell - fever and extreme tiredness,
• loss of appetite and weight,
• anaemia - can occur if you lose a lot of blood,
• anal fissures and rectal bleeding - the skin of the anus may become cracked (anal fissures), bleed and be painful.

The symptoms vary depending on the part of your gut affected. For example, if you have pain in your abdomen, with no other symptoms, it may be due to a small patch of Crohn’s disease in your small intestine. However, if the condition causes severe diarrhoea and other symptoms, the large intestine will be affected.

Additional symptoms

Some people with Crohn’s disease experience additional symptoms. These can include:

• inflammation of the joints (arthritis),
• inflammation of the eye (uveitis),
• inflammation of the liver, and
• skin rashes.

The reason why these other symptoms occur is not fully understood. However, it is thought that they may be triggered by the immune system as a reaction to the inflammation of the gut.

Causes

The exact cause of Crohn’s disease is unknown. It is thought that there may be a genetic link because there is some evidence that it runs in families. One in ten people with the condition have a close relative who also has it.

A bacterium or virus (germ) may be a factor in the cause of Crohn’s disease. Some scientists think that in people who are genetically prone to the condition, a germ may trigger the immune system to cause inflammation in parts of the gut.

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Diagnosis

As well as weight loss and ill-health, there are a few physical signs that may indicate that you have Crohn’s disease. Sometimes, a mass can be felt in the abdomen when loops of inflamed bowels are stuck together. There may also be fatty stools.

A number of tests can be carried out to diagnose Crohn’s disease, and which ones are used will depend on the part of your gut that is affected. Tests that can be used include:

• stool tests,
• blood tests to check for anaemia and other deficiencies,
• biopsy where a small sample of the lining of the gut is taken for analysis under a microscope,
• sigmoidoscopy - investigation of the lower bowel using a sigmoidoscope (a short, flexible telescope), and
• colonoscopy - investigation of the colon using a colonoscope (a long, flexible telescope).

If you have symptoms in the upper part of your gut, an endoscopy may be conducted. This involves an endoscope (a thin, flexible telescope) being passed down your oesophagus (gullet) and into your stomach, in order to allow the doctor to look inside.

For diagnosing Crohns disease, a barium X-ray of the large intestine (barium enema) or small intestine (barium meal) may be used. Barium is usually given in liquid form and will appear white on X-rays, highlighting which parts of the gut are affected. Further tests and scans may be required if a diagnosis of Chrohn’s disease is in doubt, or if there are complications.

Treatment

Medicines or steroids, to reduce inflammation in your gut, are commonly used to treat Crohn’s disease when it first develops. They are usually taken in oral tablet form, or as an enema (a tablet inserted into your anus), if the rectum or lower part of the colon, are affected.

Steroids

If the symptoms of Crohn’s disease are severe, a course of steroids (corticosteroids) may be recommended for a few weeks. In most cases (70%), the symptoms improve within four weeks of starting steroids. Once the symptoms improve, the dose is gradually reduced, and then stopped. As steroids can cause side effects, they are not usually used as a long-term treatment.

5-aminosalicylate medicines

5-aminosalicylate medicines can be used as an alternative to steroids, to treat mild to moderate symptoms of Crohn’s disease. They include sulfasalazine, mesalazine, of salazine, and balsalazide. However, they do not always work and you may need to switch to steroids if your symptoms are severe.

Antibiotics and immunosuppressants

Some people with Crohn’s disease do not respond well to steroids or 5-aminosalicylate medicines. In such cases, a specialist may advise that you use antibiotics to combat infection, immunosuppressive medicines, such as methotrexate, antibody therapy (infliximab), or a combination of these treatments.

Diet

If you have particularly bad symptoms, which cannot be controlled using medicines, you may be given a strict diet to follow. In most cases, after sticking to the diet for a few weeks, the symptoms improve and a normal diet can be gradually resumed. The reasons why this works are not fully understood, but it is thought that some foods, such as dairy products, may trigger the symptoms of Crohn’s disease and that resting the gut may help.

Surgery

As a last resort, if other treatments do not work, surgery may be required to remove the affected part of your gut. The affected part is removed and the two ends are sewn together. Surgery may also be required to treat complications such as obstructions, abscesses, or damage to your gut.

Other measures

Anti-diarrhoeal medicines can be taken to firm up your stools, and painkillers may be needed at times when your symptoms are particularly bad. If your symptoms are really severe, you may need to go to hospital to receive fluid intravenously (by a drip).

You may be prescribed iron tablets if you develop anaemia. Also, if your gut is not absorbing food properly, you may need to take vitamin supplements. If you smoke, giving up will often decrease the frequency of your symptoms

The future

The development of new medications for Crohn’s disease is ongoing, and it is likely that there will be a number of new treatment options available, for the condition, over the next decade.

Complications

Complications arising from Crohn’s disease may occur, particularly if symptoms are frequent and severe. Complications that require surgery include:

• internal bleeding,
• stricture a narrowing of part of the gut which may be due to a build up of scar tissue, causing a partial or complete blockage of the intestine,
• perforation a small hole in the wall of the gut, causing the contents to leak out, and an infection or abscess to develop inside the abdomen. This can be serious and life-threatening, and
• fistulas when inflammation causes a channel to form between two parts of the gut, such as the small intestine and colon.

Other complications of Crohn’s disease include iron deficiency, and problems with food absorption, due to scarring in the intestine, or because its length is reduced following a number of operations.

People with Crohn’s disease also have a slightly higher risk of developing bowel cancer compared with those who do not have the condition.

Diagrams

Diagram of the digestive system

Front view