Ulcerative colitis

Ulcerative colitis is a chronic inflammatory bowel disease. It is usually located in both the large intestine and the rectum. Most common symptoms are diarrhea, bloody stools and abdominal pain. The diagnosis is made based on a colonoscopy and biopsies. The illness is treated with medication and in severe cases with surgery. Ulcerative colitis is not contagious.

The cause of ulcerative colitis is unknown. The illness can start at any age, but usually in younger years (15-35 years). Bacteria and viruses have been suggested to trigger the illness, but so far there is no certain evidence. A genetic predisposition together with one or more environmental factors, which are so far unknown, affect the onset of the illness. A connection with nutritional factors has also been suggested. Many patients experience that some foods increase bowel symptoms.

Ulcerative colitis appears in the large intestine on an area that can vary in size, usually starting from the rectum. Proctitis is inflammation located only in the rectum. In left-sided colitis the inflammation extends upwards into the large intestine until the bend below the ribs on the left. When the entire large intestine is inflamed, the patient has total colitis. Even if the inflammation originally was only in the rectum, it can spread to the entire large intestine.

Symptoms

The symptoms of ulcerative colitis develop little by little. They can be continuous or recur every few weeks or months with long symptom-free periods (remission) in between.

A typical symptom is bloody diarrhea and cramping abdominal pain before defecation, lasting for several weeks or recurring. In proctitis there is not always diarrhea, but the bowel works more often than normally and there is blood in the stools. As the bloody diarrhea continues, anemia and fatigue develop, but fever is uncommon, unless the illness is already severe. In children, growth may be delayed.

Already in an early phase, sometimes even before bowel symptoms, joint, skin or eye symptoms may be present.

Examinations

IBD patients’ follow-ups are done at gastroenterology, internal medicine or pediatric outpatient clinics in hospitals, health care centers or other medical centers. IBD is diagnosed using biopsies taken from the intestinal wall in a colonoscopy. Colonoscopies are also done to follow up the response to treatment and later to find anaplasias that can develop into cancer.

The course of the illness and response to treatment is also followed up with laboratory tests from whole blood, blood serum, urine or stool samples. Laboratory tests can also detect potential co-morbidities.

Medication

Medication is decided based on the severity or the extent of the illness. The National Health Insurance (Kela) pays lower special reimbursement (65 %) for most IBD medicines. You need a medical certificate to get the marking on your Kela card that gives you the reimbursement.

In self-directed treatment, medication is increased when symptoms appear following instructions that have been discussed with the doctor. The clinic is contacted if necessary.

5-ASA or mesalazine (Pentasa®, Asacol®) is an anti-inflammatory drug. It is used to prevent flare-ups. 5-ASA can be administered as pills or topically as suppositories or enemas.

The active ingredient in SASP or salazosulfapyridine (Salazopyrin ®) is mesalazine, which is transported to the large intestine by sulfapyridine. Sulfa may cause allergic reactions and have harmful effects on male fertility.

When the illness flares up, a treatment with cortisone (Prednison®, Lodotra®, Prednisolon®, Entocort®, Budenofalk®, Colifoam®, Solomet®, Solu-Medrol®, Medrol®) is often started either as tablets, rectal foam or for inpatients as injections or infusions. Cortisone alleviates inflammation and usually eases the symptoms quickly, but it also has an immunosuppressive effect. Long-term use is not recommended due to side effects.

Immunosuppressive medication (Azamun®, Imurel®, Merkaptopurin®, Sandimmun®) is used if 5-ASA or cortisone medication do not work. The response to immunosuppressive medication develops slowly during 3-6 months, and the treatment is continued at least 3-5 years.

Biologic medications (Humira®, Simponi®, Remicade®, Entyvio®, Remsima®, Inflectra®) can be used to treat severe ulcerative colitis. They affect inflammation transmitters or block the white blood cells that maintain inflammation. Some biologic medications are given as infusions in hospitals, others are injected at home. Biosimilars are precise copies of biologic medicines and have similar safety and efficacy profiles.

Probiotics combined with 5-ASA or SASP have been found to be beneficial in the maintenance treatment of ulcerative colitis.

Over-the-counter NSAIDs (non-steroidal anti-inflammatory drugs), such as ibuprofen or ketoprofen can aggravate ulcerative colitis and increase bleeding. Paracetamol is a safer option to use for fever and as painkiller.

In pediatric ulcerative colitis, the same medications are used as for grown-ups. However, issues such as the effect on growth need to be taken into account when choosing medication.

Surgery

The decision for surgery may be made if medication does not bring the expected results. Usually the entire large intestine and rectum is removed but the anus is left and a pouch (so-called J-pouch) or an ileostomy is made. Other indications for surgery are fulminant colitis (sudden, severe inflammation), toxic megacolon (distension of the bowel) or bowel perforation, severe bleeding and anaplasias.

5–10 % of ulcerative colitis patients are operated within 10 years of the diagnosis. A third of ulcerative colitis patients in total are operated. It is always better that the surgery is pre-planned, and a good general condition and nutritional state promote recovery. It is recommended that the patient quits smoking before surgery, and alcohol should be consumed within limits.

When the surgery is pre-planned, a proctocolectomy (removal of large intestine and rectum) and J-pouch can be done in one surgery. Whether a temporary, protective ileostomy is needed will be decided on an individual basis. If the surgery is done as an emergency, the large intestine is usually removed, the anus left, and a temporary ileostomy built. J-pouch can usually be built in one or two further operations.

J-pouch or IPAA (Ileal Pouch Anal Anastomosis) is a container built of the small intestine. The large intestine is removed and cat above the sphincter muscles. A pouch sewn of the small intestine is attached to the end of the anal canal.

If the patient is in a very bad condition, old or very obese or the sphincter muscles do not function for some reason, a J-pouch cannot be made. Only rarely a J-pouch needs to be removed and a permanent ostomy made instead.

Usually the J-pouch works well and because the inflamed large intestine has been removed, medication is no longer needed. About a half of ulcerative colitis patients experiences complications after surgery, but most of them pass. Urgent problems include bleeding, failure of the suture line or infections.

The most common complication after surgery is pouchitis (inflammation of the J-pouch). Ten years after surgery, almost half of the patients have experienced at least one pouchitis. Its symptoms include diarrhea, bleeding and fever and it is treated mostly with antibiotics. The need for salt and fluids increases after J-pouch surgery, and the patient needs to drink enough and use enough salt.

J-pouch cannot be seen. The patient will need to defecate 4-9 times per day, but this improves when time passes. In about 80 % of operated patients, continence remains normal. There are exercise instructions for improving continence.

After the surgery, stools can be almost liquid. As time passes, the pouch starts to absorb more fluids and stools will become more solid. Diet can help in making the stools more solid. Diarrhea medicines can also be used, but their use should be started slowly.

Some patients have scarring in the anal area, which may make emptying the pouch difficult or cause incontinence. Scar tissue can be removed by operating or it can be stretched in endoscopy.

After removing the large intestine, the symptoms of co-morbidities usually disappear or become a great deal easier. However, there is no evidence of recovery from sclerosing cholangitis or ankylosing spondylitis. Joint symptoms usually subside and the bone mass, decreased by cortisone use, is somewhat repaired.

Having a surgery is often postponed because the patient is afraid of it and the possibility of an ostomy. Most patients think later, however, that they should have had surgery much earlier.

Complications and co-morbidities

Different co-morbidities can be related to ulcerative colitis. Some of them depend on the IBD being active and some appear independent of the phase of the illness.

In all phases of ulcerative colitis the patient may have various joint symptoms, most often arthralgia (joint pain). Sacroilitis (inflammation of the joints where the lower spine and pelvis connect) and ankylosing spondylitis can show symptoms independent of the phase of the illness. Arthritis (joint inflammation) is usually only present in the active phase of IBD. When joint symptoms appear, the possibility of other rheumatic diseases is ruled out.

Skin and eye ailments are also possible. Erythema nodosum causes purple, tender lumps especially in the legs and arms. Pyoderma gangrenosum is rarer and causes deep ulcers on the skin. Eye ailments include episcleritis (inflammation of the thin layer of tissue covering the white part of the eye) and iritis (inflammation of the colored ring surrounding the pupil).

The most common liver ailment is primary sclerosing cholangitis (PSC), which causes scarring within the bile ducts. It increases the risk of bile duct and colon cancer.

Chronic inflammation in the large intestine increases the risk of colon cancer. The cancer risk is highest among those who got sick at a young age and those whose illness is located in the left side of the large intestine or a larger area. Colon cancer in the family, sclerosing cholangitis (PSC) and continuous, even microscopical inflammation in the mucosa increase the cancer risk.

Living with ulcerative colitis

Most ulcerative colitis patients can live a fairly normal life. Average life expectancy is same as in other people. During flare-ups, the illness may limit the ability to study and work, but it rarely leads to long-term disability. The illness should be considered when choosing a career: heavy physical work and irregular shift work may cause problems. When changing jobs, it is important to mention the illness. The occupational health physician will estimate whether the illness affects the work ability. Not telling about the illness can even lead to termination of contract, if the illness significantly disturbs working.

Intestinal bacterial infections may activate the illness. Especially when travelling it is important to avoid traveler’s diarrhea. Good hand hygiene decreases the risk also if someone in the family has a stomach flu.

Ulcerative colitis patients need to take care of their immunization and booster doses. As medicines that affect the immune system weaken their efficacy, vaccines should be taken before the medication is begun. “Living” vaccines must not be given to those on biologic medications.

Stress may worsen symptoms. Stress and pain management can be learned through different relaxation methods. The efficacy or harms of various alternative treatments have not been shown in scientific studies, and their use should be mentioned to the doctor. The treatments and medications prescribed by the doctor must be taken as prescribed and should not be stopped alone. Medication must be taken care of also during remission to prevent symptoms from recurring.

Pregnancy runs usually as normal, but is it good to discuss such plans first with the doctor. Severe inflammation may make it difficult to get pregnant and increase the risk of miscarriage, and pregnancy should be timed during a remission period. Ostomy or J-pouch is not an obstacle. Medication can usually be continued throughout pregnancy.

If the illness is under control, it does usually not prevent military service. If the disease is in a difficult phase, it is possible to postpone military service or even be exempted from it. It is good to bring a doctor certificate to the drafting event.

Nutrition

No single foodstuff increases the risk of ulcerative colitis or triggers a flare-up. Some foods may, however, individually cause symptoms of the digestive tract. Dietary treatment does not replace medication or surgical treatment but good nutritional state supports recovering from flare-ups and improves general well-being.

While in remission, ulcerative colitis patients can usually eat normal food. Absolute dietary limitations are needed only rarely; usually limitations are individual. It is usually enough to eat less of the foods that cause symptoms. If a food that is essential for nourishment, it is important to find a substitute for it. Otherwise, a limited diet can lead to malnutrition. The removal of the large intestine cures ulcerative colitis, and dietary changes after surgery are due to the removal of the bowel and the ostomy.

In addition to ulcerative colitis, patients can have functional stomach ailments that do not disappear even in remission. Dietary limitations cannot prevent flare-ups, but they may help in alleviating symptoms. No instructions can be about a diet that would fit everyone; the diet is tailored from individually suitable foods.

During flare-ups patients might not have proper appetite, and foods that can normally be eaten may worsen diarrhea and abdominal pains. Foods that contain lots of fiber and are difficult to digest should be left out. For recovery, however, it is important to eat regularly and have a balanced diet. The diet can be boosted with supplements or through a tube, and if there is a risk of bowel perforation, nutrition can be given intravenously. In severe ulcerative colitis the large intestine will be removed and the patient will have an ostomy or a J-pouch. The surgery affects especially maintaining fluid and salt balances. The bowel will eventually adapt; not all dietary changes after surgery are permanent.

During diarrhea it is important to drink enough. Diluted drinks that still contain salts and sugar are best, for example diluted juices, tea, mineral water, beef or vegetable broth and juice soup. If the patient has so-called fat diarrhea, fats need to be decreased in the diet and other foodstuffs increased or dietary supplements advised by a nutritionist used to ensure sufficient energy intake.

In more severe cases, dietary treatment is tailored individually. A nutritionist helps in planning and carrying out the diet. Supplements are used when necessary.

My life with inflammatory bowel disease

Obtaining a diagnosis

Everyday life

Mission “Remission”