Chrohns disease is a chronical inflammation that can appear anywhere in the digestive system, but mostly it´s in the small intestine, ileum. Often it´s the last part of the small intestine. The inflammation can also appear in the colon and rectum.

More then 20 000 people in Sweden have this disease.

The inflammation goes deep down on the walls of the bowel, so wounds and abscesses can appear. The gist of this is, that scar formations makes the intestine very narrow on some parts.

Another usual problem is fistuls.

Usual symptoms are diarrhea, pain, fever and weigt loss.

When the inflammation is active, fatigue and lethargy appear.

Can you be cured? No, the disease can´t be cured and there is no treatment that can cure it. But Crohns can be rather calm between the attacks. For how long is very induvidual, for some, it can be calm for years.

Methods of treatments: When there is sharp pain, often you must be treated in hospital, there you have to look at the drop bottle for some days, so your body gets its nutriment back, and your bowel can get some rest. Sometimes you get blood transfusion also.

To get the inflammation go back, they use different drugs. Most usual is cortison. At some special clinics they use cortison together with other drugs.

When the attack and inflammation are over they try to keep the disease calm. Most part of the patients are on drugs all the time. Different drugs to different people. Many with Crohns have to take B12 preparation and other nutrient input. Drugs against diarrhea can be a help for some.

You must avoid stress and other things that brings the disease about.

Sometimes the drugs is not enough, so there must be an operation that takes the inflammated part away. Operation can also be needed to take away fistuls and abscesses.

If there are suspicious about Crohns, analysis will be made by a specialist. Diseases with simular symptoms must be eliminated.

The patient must leave blood and evacuation tests.

Different X-rays can also be helpful.

I don´t want go get into this, because everyone that have done this different X-rays, knows that they can be painful and unpleasant.

An ordinary day in my life, when I think I feel quite allright

The first thing I must do when I wake up in the morning is to go to the toilet, it takes about 20 minutes with attacks of cramp in my gut. (Often I must get up in the middle of the night and go to the toilet with attacks of cramp, even if the last thing I did before bedtime was to go to the toilet. This makes it difficult to fall asleep again.)

Then it´s time to get some breakfast down into my gut that feels empty by now, if I don´t feel sick of course. After breakfast it´s time for medication, and then… the toilet again, about 20 minutes this time too. When it´s time to go to work, what do I feel… cramp again, so there is only one thing to do, guess you know what, by now. This isn´t anything I can plan, so keeping time is very difficult. In the morning I have to go to the toilet about 3 - 5 times.

9.00 or 10.00 o´clock my gut feels empty again so it´s time for a sandwich. Unfortently, I can´t eat any fruits, because then I get constipation, and I can tell you, that really hurts,. After the sandwich it takes a little time before next toiletvisit for about 20 minutes with attacks of cramp.

12.00 lunch, but of course I can´t eat this or that… If I´m lucky, I only have to go once to the toilet before afternoons coffee break. Of course the next attack must come when I´m on my way from work to fetch my youngest daughter at kindergarten, or when I just started to make dinner so I must take away the pots from the stove.

After dinner it´s time for medication again. Now my gut have to work with everything I´ve eaten through the day - often this is very bothersome with cramp and gas-formation as a follow. So in the end of the day I´m very tired. But I still have to go to the toilet a couple of times, 2 - 3 times in the evening, and if I don´t the night´s sleep is totally destroyed. So the last thing I do before bed is to go to the toilet.

Add to this:

• Chronic tiredness
• Rheumatic pains
• Get an B 12 injection every two months
• Doctorscontrol
• Leaving bloodtest because of my medicin that can give secondary effect
• Special food
• Planning, because of my family that eats ordinary food
• Cortisone when I´m worse
• A bad conscience for my family, because I don´t have all the strength that a healty person and mother have. I´m trying to be as normal as I can to my kids.
• Not having the strength to do everything I want to do
• Explain to those around me

I´ve had my disease for 17 years, at least I got my diagnoses, Crohns disease in 1982. So, the person that knows what´s best for me, of course is me. Accept for when I´m worse and visits my doctor more often.

I´ve gone trough three surgerys, when they´ve taken away parts of the bowel, but the disease still comes back, I know it´s chronic but I hope that some day there will be a break-through for IBD.

The reason to why I wrote this down at the first time was that my employers at Hudiksvalls urban district, where I work as an office employee 4 hours a day, didn´t understand me or my situation at all.

Because of my disease I am now a "object to be put in other positions". My hopes are that this will help others in the same situation to have the strength to keep on, and not give up. In a way I think that I leave myself out here, on this pages, but as I said before, perhaps this can help others with IBD to get more understanding from those around us.

I know very well that IBD diseases doesn´t show everytime on the outside, so it can be hard to understand how very sick a person can be.

My employers still don´t understand me, even if I´ve tried my very best to explain to them, about me and my disease. My wishes are to have times at work that I can handle without being put under pressure. And I want to have a toilet at close quarters that isn´t occupied when I need it, because that can put me in to a crise.

In spite of this, they offer me jobs that are really stressful and so on.

I think that an employer as big as mine should be able to solve this, but the only thing they tell me is: there is no money. At the moment I´ve got a "temporary" service until a better job shows up. This is very hard to deal with for me, because I feel a strong agitation about where I will land up and how long I can stay here at this job.

My contactman at the local insurance office is really supporting me and she understands me. I don´t know if I´ve managed to get through all this without her. Because how much I want to I can´t determine over this chronical disease and I cannot help it.

Now I´m on the sick-list untill 990830, and somehow it feels like it´s "their" fault.

To be continued…