A guide for Crohn’s and Colitis patients

So what do we do?

There are various ways to deal with the disease.

“Yes, I have some sort of disease, but there’s nothing that can be done about it”
The patient does not recognize his disease and continues his life out of a complete disregard for his limitations and medical condition. This method of dealing with it usually characterizes the period that comes after the discovery of the disease. It is accompanied by the (medical!) claim that says any preoccupation with the disease only encourages it, and precious energy should therefore not be wasted. This attitude simply betrays a lack of will to deal with reality. Because the patient is not prepared to recognize his disease, he does not change his lifestyle or his nutrition. The situation therefore quickly deteriorates, and the damage that follows the inflammation will not be slow in arriving.

“Crohn’s is a disease like any other – doctor, give me pills!”
The patient assumes that because he was not born with the disease, it is separate from his body, and therefore it can be dealt with in the same way as with any alien entity that attacks the body – medication, and preferably strong medication. At the same time he neglects the repression of the various factors that encourage the disease, some of which are connected with lifestyle, nutrition, and others that have an influence on the spirit. The problem with this approach is that it ignores the fact that there is no wonder drug. The existing medication may succeed in repressing the inflammation (sometimes for extended periods), but will absolutely not succeed in repressing the disease.

“I’m a Crohn’s patient, and the disease is an inseparable part of my body”
The patient (experienced, in most cases) is reconciled to the fact of his disease. He adapts himself to an appropriate lifestyle and recognizes the limitations that stem from the disease. This kind of behavior allows a lowering of the use of medication, and generally brings with it an improvement in the state of health. Because Crohn’s disease is a psychosomatic illness (a physical illness that is influenced by psychological factors) it is very important to relate to the patient’s psyche as an inseparable part of the factors that influence the disease. One of the negative outcomes that can be caused by patients’ acceptance of the disease, is passivity in relation to its medical treatment. In extreme cases the patient is even liable to give up on conventional treatment, despite the fact that it can improve quality of life.

The truth, like everything in life, lies somewhere in the middle. Although we are not born with Crohn’s or Colitis, they are still definitely diseases that require attention. The diseases are indeed an inseparable part of our bodies, and therefore we must relate to them, but having said that, there is no need to declare war on our bodies. In this war, as with most wars, there are only losers. If you’ll allow me to be a little picturesque, the allegory of coping with the disease is one of climbing a smooth wet slope. The higher you get, the better you feel, and the struggle becomes easier. It’s a pity, though, that the starting blocks are at the foot of the slope – the very point where the physical and mental feelings are difficult, belief in success is reduced, and the climbing is much more difficult.

At the start of the climb it’s easy to stumble on the slippery ground, and to lose height. What is needed is skill, experience, patience and piles of motivation in order to maintain height and continue cautiously, inch by bowelled inch.

As a patient you can improve the way you cope with the disease with the help of various skills:

Gathering information
One of the important things that a Crohn’s patient needs to do is to take decisions. These are difficult decisions, sometimes even fateful ones, and with the wrong decisions you are likely to pay a high price. Therefore, if your fate has been left in your hands, do your best to take decisions on the basis of as much information as you can get. Collect information from every source that comes to hand: talk to doctors and therapists, surf the web, gather information from books, learn from the experience of other patients, and of course from your own personal past experience (later I will show just how much of a central role personal experience plays in decision-making). Always remember that your own view comes before any doctor’s opinion or therapist’s recommendation, and that the weight of responsibility is on your own shoulders. If you decide wrongly, it is you who will pay the price. Gathering information is critical in avoiding a situation like this.

Knowing the tools
The 21st century offers Crohn’s and Colitis patients a range of medications, both conventional and alternative. Medication – and I will expand on this later – is suited to various conditions, mainly with regard to their “intensity”. While certain medications suit states of calmness in the disease, others are designed for situations in which hurricanes literally storm through your stomach. Using an unsuitable drug at the wrong time is liable to cause damage. Strong drugs are efficient in overcoming outbreaks of infection, but at the same time they are liable to inflict no small amount of damage on the body. Thus using them during times of quietness in the disease is to impose unnecessary danger. It is important to know the drugs thoroughly, their capacities and their suitability for dealing with the disease. And also, knowing the side-effects is no less important.

How to behave when the hurricane strikes
Firstly, it’s important to quickly recognize that an attack is occurring in your body. You have to immediately reduce your amount of food, and to adjust its nutritional content to allow for easier digestion. At the next stage, after consultation with a doctor, you need to respond with drugs and therapies matching the kind of attack and the symptoms (diarrhea, pain, fever, etc.). At the same time it’s important to maintain and take advantage of every ounce of energy with physical and mental rest, so that you can cope with the storm. (Sick leave from demanding work, or cancelling your participation in the triathlon would be a good idea.) The duration and strength of the attack determines the final bodily price you will pay in the future. You therefore need to use every tool you can find to help yourself. Neglect is criminal and reckless, especially during an attack.

How to behave when things are calm
Once the attack has passed, and a period of calmness arrives, the main thing is not to become complacent. You must continue gathering information, and learning the lessons from the last attack in order to try and avoid the next one. You must be sure to keep up your physical fitness, correct nutrition and a healthy lifestyle. On no account should you fall into the tempting traps of the modern world that offers bad nutrition, mental pressure and tiredness. Falling into these traps will only shorten the road to the next hurricane.

My way to a better life for the Crohn’s and Colitis patient is made up of three parts (LMN):

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