A good life with Leśniowski’s-Crohn's disease.

How is this possible?! It is such a heresy: one thing excludes the other. To be honest, the beginnings were difficult but in time I started to understand and get on well with misters Leśniowski and Crohn. I know what they don’t like and what they tolerate. It is a constant care for health but should not we live like that?

 

What is this ailment?

By definition, taken from Wikipedia: Leśniowski-Crohn's disease: it is a chronic, non-specific inflammatory process that may affect any part of the gastrointestinal tract. Most often located in the final part of the small intestine and the initial section of large intestine. The ethology of the disease and the effective method of its treatment are still unknown.

The main symptoms that may indicate Leśniowski’s-Crohn's disease:

- chronic diarrhoea (usually without blood), sometimes night time. In severe cases, you may have to defecate 20 times per day,

- a pain in the abdomen (often right underbelly),

- an intestinal obstruction,

- perirectal changes (anal fissure, fistula, abscess).

Additionally, there may occur: a fever, weight loss (an emaciation), growth inhibition (children case), weakness and fatigue. 

 

While the cause of Crohn's disease is still unknown, it is believed to be due to a combination of environmental, immune, and bacterial factors in genetically susceptible individuals. It results in a chronic inflammatory disorder, in which the body's immune system attacks the gastrointestinal tract possibly directed at microbial antigens. While Crohn's is an immune-related disease, it does not appear to be an autoimmune disease (in that the immune system is not being triggered by the body itself).

There are no medications or surgical procedures that can cure Crohn's disease. Treatment options are intended to help with symptoms, maintain remission, and prevent relapse.” „Crohn's cannot be cured by surgery, as the disease eventually recurs, though it is used in the case of partial or full blockage of the intestine. Surgery may also be required for complications such as obstructions, fistulas, or abscesses, or if the disease does not respond to drugs. After the first surgery, Crohn's usually comes back at the site where the diseased intestine was removed and the healthy ends were rejoined, however it can come back in other locations. After a resection, scar tissue builds up, which can cause strictures, which form when the intestines become too small to allow excrement to pass through easily, which can lead to a blockage. After the first resection, another resection may be necessary within five years”.

 

That scientific definition will not reflect the emotional aspect related to that illness. According to conventional doctors of medicine, the disease is a companion for a lifetime. That sickness is still little known and every separate case is different. In the previous century it took human lives. There is a suspicion that the Crohn’s disease was the cause of the death of prince Albert - the husband of the English queen Victoria. Today, thanks to the development of medicine, the illness no longer kills. However, it devastates human body. It is impossible to function when you cannot eat a bite of food and that what you have swallowed immediately returns. I know what I'm saying. I’ve gone through it.

 

My goal is not to scare anyone; I will briefly describe my struggles with that disease that have taken place for 6 years. At the beginning the illness was winning, now I’m taking advantage. Maybe my experience will help someone who suffers from this or similar disease.

 

The history of my illness.

The first diagnosis was about neurosis manifesting in the intestinal area. I didn’t have a diarrhoea or a blood in my excrement, only very strong, painful belly cramps that appeared in the consequence of stressful situations. My doctor, the internist, who I visited when the symptoms were already too nagging, worried two indicators: elevated C-reactive protein index (CRP): 55 when the norm is to 5 and twice higher level of thrombocytes. She sent me to a gastrologist who immediately recognized the chronic intestinal inflammation. The Crohn’s disease confirmed the histopathological tests made during the colonoscopy. Endoscopy also showed narrowing of the small intestine and its large ulceration. The narrowing was responsible for painful cramps and regurgitation. I reacted well for therapy. There was no need to treat me using steroids. I took only an anti-inflammatory medicine. After a year of treatment, my condition improved so much that the gastrologist decided to discontinue the anti-inflammatory medications. It was unfortunate that I caught the virus that contributed to the renewal of the disease. The megadose of anti-inflammatory drugs helped me as well that I avoided the steroids again. However, the anti-inflammatories there have not been discontinued any more. Only the dose was reduced when I felt better. The disease was treated and gave me three months to rest from it. Then bladder started. First bladder cold, then first bacterium, second, third one... After 3 months of taking various antibiotics because the bacteria immunised to it, I was sent by a nephrologist for an ultrasonography (USG) with suspicion of a bladder fistula. The scanning result was so disturbing that the gastrologist decided to perform the diagnosis using a CT scanner and then a magnetic resonance (enteroclysis) method. This last study left no doubt. The body was already alerted. Cause: the small intestine stuck to the bladder wall, made a hole in it, and poisoned it with food scraps. I know how it sounds but I literally peed with food. Another moment and Sepsis would be there.

In addition, numerous fistulas in the abdominal cavity: inter alia to the appendix and large intestine, narrowing of the small intestine about 70 cm (generally the description was long and very depressing). A surgery. It took two hours. As a result, I lost: 70 cm of small intestine, a blind gut (the valve between the large and small intestine), the appendix. In addition, numerous fistulas were immune in the large intestine, and from what it all started: a hole in the bladder was closed. In the case of this type of disease, surgery is always an ultimateless. Intestinal connections are hardly healing in Crohn's disease case. In my case everything was aright and the surgery gave me a new life, took what troubled and enabled normal functioning. However, the surgery treats only the effects and not the reasons. In addition to anti-inflammatory drugs, I got immunosuppressive drugs. It attenuated aggressive “behaviour” of my lymphocytes. I took them for two years. Then my body began to react negatively to the treatment. It stopped metabolizing the drug, and my lymphocytes were fading fast. Changing one drug to another with a similar effect caused poisoning the body. It was necessary to stop classical treatment of Crohn's disease. Now (after 2 years) I am taking only anti-inflammatory drugs and my results are on such a level that not one healthy person could envy me. I swim, ride a horse, do Nordic walking and walk in the mountains ...

How did I achieve that?

I have defined four main areas to take into consideration in case of this disease:

 

1 / Psyche - the disease will defeat you if you believe it has defeated you.

I went through pains that did not allow me to sleep, lie or sit. There was a time when I was circling around my apartment at night over and over because I could not find a place for myself not to mention proper sleep. However, each time, whether lying on a hospital bed with a post-operative wound, stretching almost all my stomach, or when I was unable to walk because of exhaustion, I always told myself that the next day I would be stronger, healthier and in better condition. It may seem stupid to you, but the most important thing is to convince yourself, every cell in your body that it has the strength to recover, or balance. A thought - it's the energy, and we give it direction and intention to act. When we think: "it will not work; there is no such strength "- no wonder it is no different. Another thing is showing emotions. I have blocked them for a long time. It's like directing aggression inwards. And Crohn’s disease is an autoimmune illness. I remember that at the beginning of the disease I was offended by a friend who said that I was sick because I hate myself. This statement was too strong, but his message should be taken to heart. This is how we come to the second point:

 

2 / Love yourself - I love myself = I accept myself.

I gave up myself for a long time, I devoted myself to work, family, friends and peace in the world. Where was I? Exactly! I was in the last place. I required from my body an effort exceeding its capabilities. It didn’t happen sporadically but permanently. The organism was in constant stand-by mode. It had to serve like a slave. I treated myself instrumentally, like a multifunctional robot, which I often referred to as a joke. Unfortunately - it was not a joke, it was true. The mechanism finally failed. It broke down and refused to obey my orders. It had been working for a really long time. I have not been on sick leave for 9 years of work. What did I get in return? Crohn's! It is worthwhile finding a balance between work and rest, between family members and yourself. Your body is not just a suit for the soul. It creates harmony with the soul. When it begins to fail, the soul suffers. So let's take care of both. It is not a shame to think about yourself. Speak "me" and "for me" (of course, these words I don’t address to egoists, only more missionary type of people who are sacrifice themselves in the name of a higher, undefined good). Because I developed sense of mission similar to Mother’ Theresa, so before I did something with it, I had started with simpler things. First, I started resting properly. The appropriate length of sleep is crucial for me (in my case 8 hours). I try to go to bed at about 10 pm. It's truly essential. At night various processes take place: regulation of hormonal balance, functioning of such important organs such as a liver. I understand that for people who are used to the night life it can be difficult, but it will become a habit over time. The next issue is a nutrition - I don’t mean eating healthy things since it is obvious. I mean regular nutrition. I know that when you work (especially in corporations), it is often difficult to find a moment to go to the loo, so eating is in the last position. I functioned that way. Apart from constantly ringing telephones, there was a sense of being a ministry for everyone except myself. Nevertheless, in some moment you have to say "enough" and grab a sandwich. With time, when the meetings took place one by one, I brought food with me. It is not important what others will think about you, it is important that you are healthy and you will not be healthy if you are starved yourself. Then it will also turn into a habit. My stomach, when I don’t feed it, cuts off the power. When hungry, my head aches, I cannot think, I cannot function properly. I have to feed it or my body goes on strike.

Here, we come to the next point:

 

3 / Diet - I eat second-best, I feel terrible.

My biochemistry from recent blood tests: potassium, sodium, iron, protein - in the highest norm levels. Morphology is ok, no inflammation in the intestines, the indicators of the liver and the kidneys in the norm; sugar and cholesterol as well. Now let me add that for years I have been a vegetarian and with ill intestines the absorption of iron is less efficient. I do not take any iron in supplements. So how is it possible that I have such good results? The answer is simple and complex at the same time: conscious nutrition. You should exaggerate in any direction: plastic fast food on one and eating "only fruits that fall from a tree" combined with supplements on the other. The first are full of fats and carbohydrates, others with colourful chemical ingredients. I am not saying here that supplements are bad, also carbohydrates and fats are needed. However, everything in the right proportion. I eat butter because a lot of vitamins need fat to be absorbed. I supplement my meals with vitamins C and E as well as strong probiotics that complement the intestinal bacterial flora especially during strong diarrhea. I eat bread, although I try to buy bread from buckwheat, millet or rye flour. Wheat rolls were fired from the menu (limiting the attacks of heartburn). Remember that grainy bread may be placed in the intestines (in a blind gut) irritating it unnecessarily. I eat a lot of vegetables - in every form: fresh and cooked. I eat fruits but only in the first part of the day, for example in the form of a cocktail for a brunch. In case of intestines illness, don’t not eat fruits in the evening because they ferment and in the morning you drop them with slippage. I put away lactose. It stimulates inflammation of the intestines. You can live without it. Sheep and goat cheeses are very tasty and now there are more and more dairy products lactose free. I also do not recommend cheating your digestive system by drinking hectolitres of coffee. I understand that coffee stimulates. It's tasty and it also blocks the feeling of hunger. That is why you simply not need to eat. In an office it is trendy to drink coffee at every meeting, while nibbling the food is not very elegant. Nevertheless, such fashion in the long run can ruin your stomach and contribute to the development of diabetes. Coffee yes, but maximum 3 cups during the day, not 10! I have not been drinking coffee for many years and I function really well. An organism on a vegetable digestible diet has a lot of energy and does not need doping. Coffee in Crohn’s may accelerate metabolism and increase diarrhea.

 

4 / Stress - who says that stress does not exist, does not live.

Stress is an inseparable part of life. It stimulates to action. There is also a negative stress (distress) that consumes you. From my experience and observation, I can state that Crohn's disease from all the factors listed above reacts most to stress. I base this on observing that, although I provide the body with the right amount of rest and regular, appropriately selected food, one severely stressful moment is enough, and the reaction is like after eating a kilo of plumbs and drinking fresh milk afterwards. I also noticed that the number of lymphocytes in the intestines (test: calprotectin) is directly related to stress. If I have a longer nervous period in my life, the index exceeds the norm, if there are no stronger accents in a given month the results are normal. Unfortunately, this point from the list is the most difficult to implement. Today stress is permanently present in our lives: Nerve-racking job, fast life, constant changes in the environment, noise, pollution etc. Therefore, one of the next columns I will devote to the methods of dealing with stress, which I personally experience. However, in extreme cases, the problem of stress may require the inclusion of pharmacological treatment - that is, as my colleague described it - giving "power pills". Unfortunately, there is still a myth that visiting a psychologist or a psychiatrist is a sign of weakness or It is a shame, or no one confesses to taking psychotropic pills, or one speaks about it in a low voice as there was some venereal disease. Meanwhile a quickly diagnosed depression is treatable, you can have only an episodic effect and it would never return. While long present anxieties do not disappear, they only develop and intensify their negative effects.

 

The areas listed above are about Crohn's disease but it is worth that everyone, even the one feeling healthy takes them into account. Do not hurt yourself. Let us take to heart and mind the statement: we are both: the greatest friends and the enemies of ourselves.