Ulcerative colitis is a chronic inflammation of the large intestine, which is usually relapsing. A typical sign during a flare-up is diarrhea with blood and mucus in it. There is also pain, often in the lower left abdomen. Read here how you can help yourself with ulcerative colitis, how diet influences the disease and how colon inflammation occurs.
ICD codes for ulcerative colitis: K50 | K51
• Symptoms: Bloody-slimy diarrhea, cramping pain in the lower abdomen, colicky pain in the lower left abdomen, flatulence, loss of energy.
• Treatment: Medication to relieve the symptoms (5-ASA such as mesalazine, cortisone, etc.), surgery if necessary.
• Causes: Unknown; presumably a genetic predisposition in combination with various risk factors.
• Risk factors: Presumably environmental factors (western lifestyle), possibly also psychological factors.
• Diagnosis: Physical examination, blood and stool tests, colonoscopy, ultrasound, if necessary other imaging procedures.
• Prognosis: The symptoms can usually be controlled therapeutically; So far, the only chance of recovery is if the colon and rectum are removed.
• Course of the disease: mostly in episodes with individually very different duration of the episodes and the symptoms.
• Prognosis: The more extensive the inflammation, the more difficult the treatment and prognosis.
What is ulcerative colitis?
Like Crohn’s disease, ulcerative colitis is one of the chronic inflammatory bowel diseases (IBD). It usually occurs in flares, which means that symptom-free phases and disease phases in which the intestinal mucosa becomes acutely inflamed alternate. As a result of the inflammation, wounds (ulcers) form in the affected areas of the intestinal mucosa.
The inflammation in ulcerative colitis usually begins in the rectum and rectum, the last section of the large intestine. If it is limited to this section of the intestine, doctors also speak of proctitis. About 50 percent of those affected suffer from this relatively mild form.
Under certain circumstances, however, the disease spreads to other parts of the colon. If it also extends to the left-sided large intestine, left- sided colitis is present. This is the case in about a quarter of those affected. In the remaining 25 percent of those affected, the inflammation extends further up the colon. In a so-called pancolitis, the entire large intestine is affected. As the colitis expands, the severity of the symptoms increases.
Ulcerative colitis or crohn’s disease?
Many people find it difficult to distinguish ulcerative colitis from Crohn’s disease. A big difference is that in ulcerative colitis only the rectum and possibly the large intestine are inflamed, while Crohn’s disease affects the entire digestive tract (from the mouth to the anus).
In addition, ulcerative colitis develops a widespread inflammation that is usually limited to the uppermost layer of the intestinal wall, the intestinal mucosa. In Crohn’s disease, on the other hand, there are patchy, distributed foci of inflammation that include all layers of the intestinal wall.
Ulcerative colitis mostly affects young people between the ages of 16 and 35. In principle, however, it is possible to develop it at any age. Even small children sometimes suffer from chronic inflammation of the colon.
What are the symptoms of ulcerative colitis?
Ulcerative colitis often begins insidiously, so that those affected often only notice it late. But an acute course with sudden, severe symptoms is also possible. The further the inflammation spreads in the intestine, the more severe the symptoms become. In an acute episode of ulcerative colitis, the symptoms are sometimes so severe that those affected have to be treated in hospital.
Depending on the severity and progression of the disease, symptoms of varying severity appear during a flare-up. This includes:
- Bloody-slimy diarrhea
- Painful urge to defecate (tenesmus)
- Frequent, often nocturnal urge to defecate
- Cramping or colicky pain in the lower abdomen, especially before a bowel movement
- Loss of appetite, weight loss, fatigue and loss of performance
- Anemia (due to bloody diarrhea)
- Mild to high fever
- Growth disorders in children
With a mild course, the bloody stool and more frequent trips to the toilet (up to five times a day) are in the foreground, otherwise those affected are usually fine. If the disease progresses more severely, the number of trips to the toilet increases further, fever, abdominal cramps and other symptoms occur. Those affected often feel very ill and powerless.
Discomfort outside of the intestine
In some cases, symptoms also occur outside of the intestine. However, this happens less frequently in ulcerative colitis than in Crohn’s disease. The most common are painful inflammations of the joints (arthritis), the spine or the sacrum. Sometimes inflammation develops around the eyes or bone loss (osteoporosis).
Small ulcers, suppurations or red-purple nodules may form on the skin (especially on the front of the lower legs). In some cases there is inflammation of the bile ducts inside and outside the liver (primary sclerosing cholangitis).
How can ulcerative colitis be treated?
Since the causes of ulcerative colitis are not yet exactly known, it cannot be treated causally so far. However, there are numerous measures to alleviate the symptoms and to extend the symptom-free time between the flare-ups.
In particular, various drugs are available for the therapy of ulcerative colitis. They are used both in the case of an acute flare-up (flare-up therapy) and for maintenance therapy after an acute flare-up in order to extend the disease-free period.
Surgery is an option for severe or complicated cases of ulcerative colitis or for complications such as bleeding.
Flare therapy in ulcerative colitis
In the case of ulcerative colitis, medication works best directly at the site of the inflammation in the intestine, for example as a suppository or enema. Due to this targeted local application of the drugs, there are fewer side effects than with drugs that have a (systemic) effect throughout the body, such as tablets.
The following drugs are available for flare therapy:
• 5-ASA (5-aminosalicylic acid) has an anti-inflammatory effect. Possible dosage forms are suppositories and foams, enemas or tablets. Mesalazine, a slow-release drug with a prolonged effect, is usually used.
• Corticoids (“cortisone”) also have an anti-inflammatory effect (e.g. prednisolone). In milder cases, they are applied locally (such as suppositories or enemas), for more severe symptoms in tablet form.
• Immunosuppressants are active ingredients that dampen the activity of the immune system (e.g. azathioprine, ciclosporin A, tacrolimus). They are used for severe or complicated ulcerative colitis, for example when cortisone does not work or is intolerable.
• Therapeutic antibodies, such as adalimumab, infliximab, vedolizumab or ustekinumab, also inhibit the immune system and thus the inflammatory reaction in different ways. They are also considered in more severe cases of ulcerative colitis when cortisone is ineffective or intolerable.
• The so-called JAK inhibitor tofactinib affects the formation of proteins that cause the inflammatory reaction in ulcerative colitis. It is an option for those affected who are not affected by standard therapy with 5-ASA and corticosteroids.
Which of these drugs the doctor uses to treat ulcerative colitis depends on several factors. In addition to the extent of the symptoms, the severity and extent of the inflammation in the intestine play a role (stepped therapy). When planning therapy, the doctor also takes into account how well the patient has responded to the medication and how great his or her risk of colon cancer is. In the case of a severe acute flare-up, treatment in the hospital is advisable.
Doctors speak of severe ulcerative colitis when the following criteria are met: six or more severe bloody diarrhea a day, fever, palpitations (tachycardia), anemia and reduced blood sedimentation rate.
Maintenance therapy for ulcerative colitis
According to current guideline recommendations, as soon as the disease has recovered, people with ulcerative colitis should use 5-ASA daily in the long term (at least two years). This can prevent a recurrence and reduce the risk of colon cancer.
If, despite the daily use of 5-ASA, there is another flare-up, the doctor expands the future maintenance therapy (therapy escalation) : For example, the doctor increases the 5-ASA dosage or prescribes immunosuppressants or TNF antibodies instead.
Cortisone, on the other hand, is not suitable for maintenance therapy in ulcerative colitis: it is not effective for this purpose and causes some serious side effects (osteoporosis, cataracts, etc.) with prolonged use.
For those affected who cannot tolerate 5-ASA, a probiotic containing the live bacterium Escherichia coli Nissle is available. These are non-disease-causing intestinal bacteria that are intended to lengthen the symptom-free intervals.
Ulcerative colitis: surgery
Sometimes ulcerative colitis can no longer be controlled with medication. Then an operation is inevitable. The same applies if colon cancer or a precursor thereof develops. Surgery is also required as soon as possible for certain complications, such as a toxic megacolon and severe bleeding that cannot be stopped.
During the procedure, the surgeon removes the entire colon, including the rectum (proctocolectomy). From part of the small intestine, he forms a sac that he connects to the anus. Once everything has healed, this sac functions as the new rectum. Until then, the surgeon creates a temporary artificial anus.
After the operation, those affected no longer need any ulcerative colitis medication. However, there may be a change in bowel habits: some of those affected have more frequent bowel movements after the procedure than before. In addition, the stool may be thinner and greasy.
Ulcerative colitis: you can do it yourself
See a doctor at the first sign of blood in your stool. If he initiates the flare-up therapy early, it is possible to shorten and soften the flare-up. You should stay in bed during a severe acute flare-up.
Get psychological help ! A psychologist or psychotherapist often helps those affected to cope better with their illness. Better handling, in turn, helps to alleviate the symptoms, because the influence of the psyche should not be underestimated.
Join a support group for people with ulcerative colitis (or inflammatory bowel disease in general). The exchange with other affected people helps many people to cope with the disease.
In order to increase the quality of life and well-being and to reduce stress, relaxation methods, yoga, meditation or regular exercise (such as jogging) are recommended.
The measures mentioned supplement conventional medical treatment at best, but do not replace it. Talk to your doctor about how you can best support the therapy yourself.
Diet in ulcerative colitis
There are generally no special guidelines for diet in ulcerative colitis. Those affected should ensure a balanced, varied diet.
Deficiency symptoms occur quite easily in ulcerative colitis . These include, for example, lack of iron, zinc, vitamin B12 or folic acid as well as anemia. Reduced bone density (osteopenia) or bone loss (osteoporosis) and malnutrition are also possible consequences of ulcerative colitis.
In such cases, an individually adapted diet is very useful, such as many calcium-rich foods for weak bones. Those affected should consult their doctor or nutritionist for advice.
In the event of severe deficiency symptoms, those affected should also take preparations with the missing vitamins or minerals in consultation with the doctor treating them.
Some people with ulcerative colitis have a poor tolerance for certain foods in general or during flare-ups. It is advisable to take this into account in the diet. For example, if you have an intolerance to milk sugar (lactose intolerance), it makes sense to avoid or limit the consumption of milk and milk products such as cheese or yoghurt.
In the case of acute flare-ups, experts advise eating little fiber (e.g. wholemeal bread or legumes). Because the insoluble fibers cause the stool to swell and stimulate bowel movements – very unfavorable if you already have diarrhea. Those affected should also avoid coffee and hot spices because they irritate the intestinal mucosa.
Causes and risk factors for ulcerative colitis
The causes and risk factors for ulcerative colitis are not well known. Presumably, among other things, a genetic predisposition plays an important role. Ulcerative colitis sometimes runs in families. For example, siblings of those affected have a ten to 50 times higher risk of also developing ulcerative colitis than the normal population.
The genetic predisposition alone does not lead to the outbreak of the intestinal disease. Scientists suspect that factors such as diet, infections and a disturbed immune system are also involved in the development of the disease. The psyche may also have an influence. Ulcerative colitis is not a classic autoimmune disease.
According to the current state of knowledge, active smoking does not appear to increase the risk of ulcerative colitis or to influence its severity. Ex-smokers, on the other hand, have an approximately 70 percent higher risk of developing the disease.
In the case of existing ulcerative colitis, mental stress may intensify or even trigger an attack of the disease.
Diagnosis of ulcerative colitis
The diagnosis of ulcerative colitis consists of several components. First, the doctor will have a detailed conversation with the person concerned in order to take their medical history: Among other things, he will have the symptoms described in detail and will ask about any previous illnesses and known ulcerative colitis diseases in the family.
Other important information for the doctor is, for example, whether the person concerned smokes or has smoked, takes medication regularly or has an intolerance to certain foods.
After the anamnesis interview, a physical examination follows. This includes the doctor feeling the anus with a finger (digital rectal examination). A complication of ulcerative colitis is sometimes a tumor in the rectum, which can often be felt in this way.
The next important step is a blood test: important are, for example, the inflammation values CRP (C-reactive protein) and the blood sedimentation. The electrolytes sodium and potassium are also often altered, since the frequent diarrhea usually leads to a corresponding deficiency.
Elevated levels of the liver enzymes gamma-GT and alkaline phosphatase (AP) in the blood indicate whether inflammation of the bile ducts inside and outside the liver (primary sclerosing cholangitis) may have developed – a complication of ulcerative colitis. In addition, the blood values provide information about possible anemia or iron deficiency.
In ulcerative colitis, certain germs (bacteria, viruses, parasites) spread easily in the intestine – especially during an acute attack. To rule out such an infection, the doctor does a stool examination. On the other hand, bacterial infections can also cause symptoms similar to those of ulcerative colitis. It is therefore important to rule out other diseases by examining the stool.
A reliable method of detecting ulcerative colitis and determining its extent is a colonoscopy. The doctor inserts a thin, flexible, tube-like instrument (endoscope) through the anus into the intestine and pushes it up into the large intestine.
At the tip of the endoscope is a tiny camera and a light source. The doctor uses it to examine the inside of the intestine. In this way, changes in the mucous membrane and inflammation can be detected, as they occur in ulcerative colitis. If necessary, the doctor takes tissue samples directly via the endoscope in order to have them analyzed in the laboratory.
After the diagnosis of ulcerative colitis, regular colonoscopies are carried out as a check.
It is often not easy to distinguish between the two chronic inflammatory bowel diseases ulcerative colitis and Crohn’s disease. In cases of doubt, it is therefore necessary to examine the rest of the digestive tract for changes. In this case, the doctor uses the endoscope to examine the esophagus, stomach and duodenum (esophagogastroduodenoscopy, EGD).
The entire small intestine can be viewed more closely from the inside using capsule endoscopy. The tiny endoscope the size of a vitamin capsule is swallowed and films the inside of the digestive tract on its way to the anus. It sends the images via the built-in transmitter to a data recorder that the person concerned carries with them.
The doctor examines the abdomen with ultrasound both for diagnosis and repeatedly in the further course of the disease. For example, it recognizes inflamed sections of the intestine. A severely enlarged intestine (megacolon) as a dangerous complication can also be detected on ultrasound.
In certain cases, other imaging procedures are necessary. For example, if there is a narrowing of the large intestine (colon stenosis), the doctor will order a computer tomography or magnetic resonance imaging (MRI) and take a tissue sample from the abnormal area to rule out colon cancer.
People with ulcerative colitis have an increased risk of developing colon cancer. Therefore, you should go to the doctor for regular check-ups.
Course of the disease and prognosis
Like the onset, the course of the disease in ulcerative colitis is unpredictable. In more than 80 percent of those affected, ulcerative colitis progresses in phases: phases with more or less severe symptoms (acute flare-ups) alternate with phases without inflammation and symptoms. Doctors speak of a chronic relapsing course.
In about ten percent of patients, the disease takes a chronic, continuous course: the symptoms do not completely subside after a flare-up.
In a few cases, ulcerative colitis shows a fulminant course: the disease begins suddenly with severe, bloody diarrhea, severe abdominal pain and high fever. Those affected dehydrate quickly and may develop shock symptoms. About three out of ten people affected die in the course of the disease.
The time between two consecutive episodes varies. The symptoms during an attack are not the same for every attack and for everyone affected.
What is the prognosis for ulcerative colitis?
The prognosis for ulcerative colitis varies depending on the spread of the inflammation. The symptoms and the course of the disease can be kept under control by means of drug treatment. If ulcerative colitis is limited to the rectum and directly adjacent parts of the large intestine, this is usually sufficient for those affected to lead a reasonably normal life with a normal life expectancy.
The more extensive the inflammation in the intestine, the more difficult the treatment and prognosis of ulcerative colitis. But even with pancolitis, more than 80 percent of those affected are still alive after 20 years. The disease can currently only be cured by removing the entire large intestine.
Complications of ulcerative colitis
A dreaded complication of ulcerative colitis is the so-called toxic megacolon : if the inflammation spreads to the entire intestinal wall, the intestines in some of those affected will expand acutely. The stool is no longer transported because the intestine is paralyzed (intestinal paralysis, paralytic ileus). The abdomen is swollen, hard and painful. The patients have a high fever.
There is also a risk that the massively expanded intestine will burst (intestinal breakthrough, perforation). Then the contents of the intestine (faeces) are emptied into the abdominal cavity – peritonitis develops. In such cases there is danger to life!
Another complication of ulcerative colitis is severe bleeding : the ulcers in the intestinal mucosa that form as a result of the inflammation sometimes rupture and bleed. In severe cases, the blood loss is so severe that the affected person faints.
In children, ulcerative colitis can cause growth retardation, which is made worse by poor nutrition.
People with ulcerative colitis have an increased risk of also developing colorectal cancer (colon cancer, colon carcinoma), especially if the intestinal inflammation is very extensive. Regular check-ups (colonoscopy with sample collection) are therefore important for ulcerative colitis. Those affected will find out from their treating doctor at what intervals the examinations are useful.
Long-term therapy with mesalazine can reduce the risk of colon cancer by around 75 percent!
A possible consequence of the removal of the colon and rectum is the so-called pouchitis : Doctors call the sac-like small intestine reservoir, which the surgeon forms into an artificial rectum during the course of the operation, a “pouch”. This becomes infected in about half of those affected in the years after the operation. Signs of pouchitis include diarrhea, bleeding from the intestines, and fever. Enemas with cortisone or antibiotics help against the inflammation.
Effects on pregnancy
Usually, ulcerative colitis does not affect the pregnancy. However, an acute flare-up at the beginning of pregnancy seems to slightly increase the risk of malformations in the child. How pregnancy affects disease activity cannot be predicted. Symptoms improve in some women, but may get worse in others.
Degree of disability in ulcerative colitis
The so-called degree of disability is a measure of the severity of a disability and the associated functional impairments. In the case of ulcerative colitis, it varies between 20 and 80 depending on the severity of the disease (the maximum value for the GdB is 100). People with a GdB of 50 or more are considered to be severely disabled. The GdB is relevant because people with disabilities are entitled to compensation for disadvantages in certain situations.