I got ulcerative colitis and it was confirmed with colonoscopy i 2012. Personally I was rather old when I got the diagnose, but I was ill long before the bleeding diarrheas occur. In addition I had stomach pain, headaches, dizzy and fatigue. When the gastro specialist said «you got ulcerative colitis» he put me on medication right away. It was tablets, suppositories and rectal installation liquid. During a couple of days the bleeding stopped.
Ulcerative colitis is a chronic inflammation in the colon. It is an autoimmune disease where the body actually attacks its own cells. The scientists are not sure about the reasons. It seems to be some genetic, immunological and psychological reasons to it. But never the less, ulcerative colitis attacks the colon causing ulcers, bleeding and diarrheas. Ulcerative colitis and colonoscopy controls have become a part of my life.
Once a year I am having a colonoscopy control. Before a colonoscopy you have to have a couple of days on a diet and to use some laxatives. The diet can be different between the hospitals. But the common rule is some days on clear liquids without milk. The day before the examination you may drink the laxatives. On these days I am on a sick leave, because you got to “cling” to the toilet. A lot of water and other clear liquids with sugar are important. You need energy and to prevent dehydration.
A Colonoscopy can be painful. Some patients will need painkillers, or something to relax on during the procedure. The medicine has to be given intravenous. So far I have managed without the painkiller, and that is simply because of the doctor handling the scope.
The doctor is using water, air or CO2 to expand the bowel. You can watch the whole procedure on the monitor if you want. During the procedure the gastro specialist will take biopsies. Every now and then you have to turn and change the position to make the access and the doctor’s view easier.
Living with ulcerative colitis
Each person with ulcerative colitis got an individual history. Personally I have been using one type of medicine called Asacol all the way. Other people must use other medicines, and some needs surgery. It is all about taking control over the disease.
I have read a lot about the disease. Some scientists say that food has no impact on the disease and some recommend the foodmap diet. It is difficult to live on a diet when you got a family. But over the years I know what food to eat.
Persons with ulcerative colitis have to be careful with certain medicines. It is medicines which contain acetylsalicylic acid like aspirin, ibuprofen, voltaren and naproxen. In addition you shall not use iron supplements. These medicines can actually trigger your disease.
Stress triggers my disease. It must not be to many things going on at the same time, or the same day. I have found my ways to calm down and recreate, like my hobbies, music, audiobooks, affirmations and mindfulness. Meeting up with other people with the same disease can help you accept the situation and deal with your life.
My experience as a patient
You will experience good and bad days. And since ulcerative colitis is an autoimmune disease, it may have effect on the entire body. Many got symptoms from their joints, spine, eyes and skin and sometimes it feels like having the flue. But not all of the doctors accept these facts. Why is it so hard to believe? You are rejected with this psycho-somatic label, which is similar to “I am not taking you seriously.” Whether there are some psychological components or not, should not define you as a human being. It does not matter what disease you got, there is and will always be a psychological side of each and every one of us. Are there any diseases that don´t ?
Will there soon be any new knowledge?
My experience is that this disease is a low status disease and it is surrounded with taboos. The quite opposite of a heart attack, where the blue lights are blinking from the doctors and nurses heels. Yes I now a heart attack is acute, but these patient may also get anxiety. But this anxiety is more legitimate than someone with just a bowel disease. Are there any scientists out there working on the case? Nothing much has changed during the years since I graduated the nursing school. The laxatives have changed though, but I hope that the patients with this disease are soon to be examined with something else than through a colon scope.
I have heard about these examination capsules you can swallow, but I have heard about them for several years now…. During one of my examination I told the gastro specialist that I could not have a glass of red wine, because it gave me stomach pain. But my intestine where fine. She meant that I had an irritable bowel syndrome. When I was about to leave the gastro lab the nurse came towards me and said: “Well now you can have your glass of wine.” She is a typical example of what kind of comments people with lack of knowledge can give you. As I left I said: “No I actually can´t. Think about it. This examination did not give me the answer why I can´t.”
Well that is my life with ulcerative colitis and colonoscopy controls. I just wish I could live without them.