Crohn’s disease and me....

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. During this dicourse you may notice that  I seem to have a bit of a problem with doctors. I don’t really, well, maybe a little but it is important to note that much of the problem I have with doctors is that they really don’t know much about Crohn’s Disease.

It must be remembered that doctors know science, which is fine but, Crohn’s disease tends to be made up different things and there are aspects of the disease which have little to do with  science. Unfortunately, this fact seems to get lost with many if not all doctors. This gives rise to a situation that can make things difficult and , in my own experience, extremely difficult.

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

It is very important to remember that neither medical science nor doctors are perfect in regards to Crohn’s disease or, for that matter, any other medical problem you might have. Doctor’s do not have all of the answers and this of course means that the responsibility for your body and your health can only be ultimately yours.

I really don’t want to seem to be preachy but it is important to get a handle on the fact that once you understand this basic truth, you could save yourself a lot of problems. In my own case, for 25 to 30 years now I have been going to doctors whenever I flared up and for 25 to 30 years the diagnosis has invariably been that I had IBS (irritable bowel syndrome).

Eventually I came to the conclusion that the diagnosis I was getting actually had very little to do with me. It 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”.

You see, doctors tend to want to give you an answer to your problem, which is understandable but, in the case of Crohn’s and IBS there is really no answer. In actual fact they don’t know what causes it and they don’t know what it is. This lack of knowledge can and does lead to big problems.

During all this time I was never given anything to go on, no regimen to follow, no diets, no place to go to fix it. So naturally, as you do, I let it ride and this is what I mean by taking responsibility. Hind sight is a wonderful thing but I could have saved myself a lot of grief if I’d looked at it in a different way. Unfortunately I didn’t.

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. So, 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 didn’t have IBS, I had Crohn’s disease.

Unfortunately, the treatment for Crohn’s just happens to be the complete reverse to the treatment of IBS. In my case, because of the Crohn’s, the area of my bowel between the large and small intestine had ulserated to the point of almost being closed. This of course, necessitated no fiber, none, not a bit of it and boy what a problem lies there in . Imagine if you will trying to push a whole watermellon down the drainwhole in your sink.

In all fairness to my doctor, he was 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 and 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 was all up to me.

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). Within five minutes she said I needed to go to hospital, which I did. At the hospital I was immediately given a bed and was subsequently diagnosed with a blocked bowel.

Major surgery was scheduled for the following week. Crohn’s disease is rarely 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. If you have a problem of this sort, get as much different counsel as you can. 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 can be difficult and in a limited number of cases fatal but, symptoms can be dramatically lessened or even 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 the disease. There is also a psychological aspect to Crohn’s that I have yet to see anybody discuss or even mention and will be talking about that at another time as well. But, right now I have got to get back to my studio.

Thanks for dropping by.

Crohn’s disease – What Is It?...

The following are not my words but I thought I should put in a formal definition for information purposes…

“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.

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

Crohn’s disease and stress: The mind-body li...

Can stress make Crohn’s disease worse?

Quote; “There is no evidence showing that stress causes Crohn’s disease. However, people with Crohn’s disease sometimes feel increased stress in their lives from having to live with a chronic illness. Some people with Crohn’s disease also report that they experience a flare in disease when they are experiencing a stressful event or situation.

There is no type of person that is more likely to experience a flare in disease than another when under stress. For people who find there is a connection between their stress level and a worsening of their symptoms, using relaxation techniques, such as slow breathing, and taking special care to eat well and get enough sleep, may help them feel better.” Unquote.

Has this been my experience?

Quite frankly no, this has not been my experience. When I decided to put down my thoughts about my experiences with Crohn’s disease I did a bit of research online. To date the short passage above has been literally the only one that I have found tying Crohns to stress. Personally, I can’t imagine why that would be because in my own experience there is a huge connection between stress and Crohn’s.

How I react to stress.

For me, the way it works is this; When other people are under stress they get a headache but when I get stressed I get a blocked bowel. Of course, it depends on just how stressed I am, I don’t always get blocked bowels. Nonetheless, such has been the case all of my life and for as far back as I can remember.

Let me illustrate.

About four years ago I was admitted to hospital for, guess what, a blocked bowel. In the course of events the blockage resulted in surgery and a bit of the bowel was removed.

All fine and good, since then my condition seems to have gone into a period of at least partial remission. I’m not symptom free but, all in all I am doing very well thank you very much. So, was this improvement because of the surgery?

Essentially, yes but possibly only to a point. The surgery did certainly take out the scar tissue that had developed over the previous years and I am sure that this did improve my condition but, Crohn’s isn’t all about scar tissue.

Change of mindset.

I have been aware of the presence of a link between the mind and body for quite some time now but I never took it any further than that. My experience in the hospital however, changed that considerably.

It was a difficult time and for various reasons which I won’t go into here I wound up spending more time than I care to think of lying prone in a hospital bed. Not fun but it gave me lots of time to think and I began to realize that I was where I was because of how Crohn’s translates stress in my body.

Subsequently and after putting these ideas about stress into play my symptoms have lessened considerably. Now, the effects of Crohns on my life and my health are a shadow of what they were.

Change is easy, right?

Under the circumstances, instituting change was actually a fairly simple thing to do. It became obvious that given a choice between a blocked bowel and a relaxed mind, I will choose a relaxed mind every time.
It’s easy to alter your way of thinking when faced with possible disastrous consequences.

Just ask anyone who has been diagnosed with cancer how easy it was to quit smoking. Across the board they will say that there was no problem quitting and with very limited withdrawals being experienced.

This says two things. The first is that change is very possible; you just have to look at it the right way. Secondly, it demonstrates just how extremely strong the effect of the mind is on the body.

Why is their no evidence of the mind/body link with Crohn’s disease?

Why is their no evidence linking Crohn’s with stress? I am not exactly sure but I do believe that the problem lies more with the system than any lack of evidence. One has only to look at the attitudes of those that are treating the disease. In my own experience, medical practitioners for all their knowledge still discount the mind/body link to an overwhelming degree. Again, how that can be is difficult to understand.

In medical speak there is a thing called the placebo effect;

“Sometimes known as a non-specific effect or subject-expectancy effect, the placebo effect occurs when a patient’s symptoms are altered (i.e., alleviated or exacerbated) by a treatment, due to the individual expecting or believing that it will work. The placebo effect has been said to occur when a patient is treated in conjunction with the suggestion from an authority figure or from acquired information that the treatment will aid in healing, and the patient’s condition improves”

In actuality, the placebo effect amounts to a great deal more than the quote above would seem to indicate. As a matter of fact, it is taken so seriously that very little medical research is considered valid unless the placebo effect is in there as part of the mix.
Not only is this is a well-known, documented and accepted fact but, it’s a perfect example of the mind affecting the body and the mind healing the body. Yet, still the possibility of the mind having a direct relationship with Crohn’s disease much less any other disorder is almost completely discounted.

The mind/body link has one hell of an up hill climb.

The mind/body link should not and cannot be ignored yet it is. If you have Crohn’s I do not advise you in any way shape or form to ignore your medications if they help. I do strongly advise however, that there is another aspect of your disease that you are most likely not addressing and in my opinion you would be very well advised to address it.

It amounts to just a little change in how you look at things and you might be very surprised at the results. In reality you do possess the perfect tool for healing yourself and it’s sitting right between your ears!

Crohn’s Disease – Tips On How To Deal ...

Crohn’s disease like any other chronic disease is a challenge, there is no getting around it.  Flare ups can be extremely painful and can make day-to-day living seem impossible and when the disease is in remission, the stress of worrying about the next flare up can be almost as bad.  So, here are a few tips that might help.

A Crohn’s disease flare up can show itself in the form of symptoms such as fatigue, joint pain, weight loss, abdominal pain and rectal bleeding.  A loss of appetite and diarrhea are also not uncommon.

Recognizing the risk factors involved in dealing with flareups is a good first step.  Possibly, one of the most major risk factors in regards to a flareup is stress.  While it’s impractical to think that you can remove stress from your life completely, making a concerted effort to try to limit the amount of stress in your life can and will seriously reduce the amount of and severity of Crohn’s flareups.  Stress can be a real monster to deal with but there are a number of great ways to relax and stave it off such as yoga or meditation or even just making time in your schedule to read a good book.

Another possible trigger for Crohn’s disease is a woman’s menstrual cycle.  This can be a problem for many women who suffer from the disease because it is known that flareups can increase during this period.  For women who do experience this it is recommended to keep a diary over a period of months to look for trends and help develop a treatment regiment with your doctor to put an end to the cycle.

Another factor to flareups has been linked to the use of over-the-counter drugs such as ibuprofen (Advil) and naproxen (Aleve).  In this case the best thing to do if you need a non-prescription painkiller is to find out what is right for you by consulting your doctor.

There are three basic categories of treatments for dealing with flare-ups: drug treatment, nutritional adjustments and as a last resort surgery.

Anti-inflammatories such as Sulfasalazine are the drugs that are most common in treating Crohn’s disease. Sulfasalazine has shown to work for a majority of Crohn’s sufferers, but it’s not a cure-all.  It is always important to remember that this drug, much like all other drugs have side effects such as nausea, vomiting and headaches.

Remicade is another drug that has been used in the treatment of moderate to severe Crohn’s and has been approved by the FDA.  This drug actually blocks the bodies inflammatory response but is only used for patients who don’t respond to more traditional methods of treatment.

Another common way to deal with Crohn’s flareups is by using nutritional supplements.  This course of action is geared to those that don’t want to use unnatural medications.  A good first step in going to natural route is to avoid things like spicy foods, whole grains and dairy products.

Drinking high protein shakes to make up for the fact that patients intestines are so ravaged that they don’t absorb nutrients anymore can also be a good way to go in dealing with the disease.  Children especially can get benefit from this because they need these nutrients to grow.

Lastly, for a large number of Crohn’s sufferers there is always a possibility that surgery will be required at some point or other to deal with the long-term effects of the disease.  This of course, should always be considered as a last resort and that it must be remembered that removing a section of intestine does not cure the disease.  Unfortunately, over time the intestine becomes too deteriorated by ulcers.

The trick is to be mindful of your disease and aware of the flare-ups.  By taking action early you could lesson your symptoms, lessen the damage created by those symptoms and thereby lessen the need for surgery.