Ulcerative colitis is an inflammation of the lining of the rectum, but the colon can also become inflamed. Common symptoms of ulcerative colitis are poop blood and diarrhea, and you can rush to the toilet in a hurry. You may also have a stomach ache after eating. Ulcerative colitis does not go away, but with treatment, it can often be trouble-free.
Ulcerative colitis is a so-called inflammatory bowel disease. It can sometimes be difficult to distinguish between ulcerative colitis and Crohn’s disease, another inflammatory bowel disease. In Crohn’s disease, the entire gastrointestinal tract can be inflamed, and not just the colon and rectum.
Symptoms of ulcerative colitis
These are the most common symptoms of ulcerative colitis:
- Blood or mucus in the poo.
- Diarrhea, often blood mixed. You may also be constipated if only the rectum is inflamed.
- Stomach pain, which often gets better after you have pooped.
- Feelings that it is pressing in the rectum and that you are in a hurry to poop.
- Fatigue and powerlessness. It may be due to anemia if you bleed a lot from the gut.
- Weight loss. This may be due to eating fewer amounts of food, losing fluid through diarrhea or due to the inflammation of the intestine itself.
- Fever, if you are very ill.
- Disorders of other parts of the body, such as the skin, eyes, and joints.
The disease lasts for periods
The disease lasts for periods, so-called forests. This means that you have periods of trouble and periods when you feel better. The trouble you get and how long they last are different from person to person.
When and where should I seek care?
If you think you have blood in your pouch, contact a health care center or an on-call clinic. If closed, you can wait until the health center or on-call reception opens.
If it’s in a hurry
If you have one or more of the following symptoms of ulcerative colitis, please contact a health care center or on-call reception immediately:
- You have intense and bloody diarrhea.
- You have a fever and stomach ache that does not go over, as well as blood in the pooch or more diarrhea than before.
If closed, seek care at an emergency room.
If you have already been diagnosed with ulcerative colitis
If you already know that you have ulcerative colitis and you are getting worse, contact your gastrointestinal clinic or health care center:
- You get more stomach ache or more diarrhea.
- You get a fever that you suspect may have to do with your illness.
- You lose weight.
- You can feel discomfort from the joints, skin or eyes.
The doctor feels on his stomach
At the doctor at the health center, you first have to tell you about your complaints. Then the doctor feels on the stomach and, if necessary, examines the rectum with a plastic tube, called a rectoscope.
The survey usually takes no more than a few minutes. It doesn’t usually hurt, but the rectal examination can be perceived as unpleasant.
You are allowed to submit blood tests and stools
In connection with the visit, you will be given blood tests and stools.
The blood tests may not show if you have ulcerative colitis, but they can show if you have severe inflammation in the body. With the tests, the doctor can also see if you have anemia or iron deficiency.
With the help of stool samples, the doctor can see if the inconvenience is due to something else, for example, a bowel infection. The doctor can also see how high the protein calprotectin you have in the pouch.
A person who has ulcerative colitis usually has higher levels of calprotectin. However, some people who have no inflammatory bowel disease may also have a slightly elevated value of calprotectin.
Referral to a gastrointestinal specialist
You usually get a referral to a gastrointestinal specialist if the doctor at the health center suspects you have ulcerative colitis. The gastrointestinal specialist is also called a gastroenterologist.
At the gastrointestinal reception, various groups of health care professionals work in teams. A team can consist of, for example, gastrointestinal specialists, surgeons, nurses, ostomy therapists, and dietitians. Often you have the most contact with a specialist nurse in the team.
If your child has intestinal inflammation, the child should be treated by specialists in pediatric diseases with a focus on gastrointestinal problems.
More research may be needed
You may be able to do more examinations depending on what the blood samples and stool samples show. You will then receive a referral to the exam (s) to be performed.
Here is a list of surveys you can do:
- Colonoscopy means the colon of the large intestine is examined using a soft flexible tube called a colonoscope.
- Magnetic camera examinations can be done on occasional occasions to see if the small intestine is inflamed.
- Computed tomography is done to detect complications, for example, if the colon is dilated.
It is especially if you are very ill that you can get the bowel x-ray with computed tomography. Otherwise, it is uncommon to have to x-ray the bowel of ulcerative colitis.
It may take time to get the right diagnosis
The doctor makes the diagnosis by both the symptoms and various examinations together showing that you have ulcerative colitis. It can sometimes be difficult to distinguish between ulcerative colitis and Crohn’s disease.
There is also an intermediate form of Crohn’s disease and ulcerative colitis, so-called unclassified inflammatory bowel disease. The symptoms and treatment are about the same as with ulcerative colitis. Unclassified inflammatory bowel disease is sometimes shortened to IBD-U.
It may take some time for a secure diagnosis. Sometimes the doctor makes a first diagnosis which must then be changed, depending on how the disease develops.
Can feel both good and hard to know
Many can feel relieved when they get an explanation for their problems. Others may find it difficult because ulcerative colitis is a lifelong disease. However, getting the right diagnosis can still be the basis for getting the right treatment.
Most people who have ulcerative colitis need some form of treatment. The treatment does not cure the disease, but it reduces and relieves inflammation of the intestine. Treatment also reduces the risk of getting sick again.
The treatment usually consists of drugs, but if you have a very serious illness you may need to remove the colon. Most people with ulcerative colitis do not need surgery.
Treatment of ulcerative colitis with drugs
Drug treatment for ulcerative colitis affects the disease in several ways:
- The treatment relieves the hassles you get when the gut is inflamed.
- The treatment heals the lining of the intestine as well as possible.
- The treatment affects the immune system and prevents the gut from being inflamed again.
If you have sudden and intense symptoms of ulcerative colitis you will usually receive short-term treatment to relieve the problems. You then get so-called 5-ASA preparations or cortisone. When the trouble then subsides, you may sometimes use other medicines that reduce inflammation and reduce the risk of relapse. Which drugs and what dose you receive will depend on your illness.
Medicines that relieve the problems
Medicines for diarrhea and leakage
You may need medication to reduce diarrhea and leakage from the rectum. These drugs also prevent you from losing fluid through loose poop. Fiber supplements can also help make stools firmer and reduce diarrhea.
Tell your doctor if you are taking this type of medicine. The drugs can give you a mistaken idea that you have fewer diarrhea per day, and thus a mistaken idea of how inflamed the gut actually is.
Drugs for skin cracks
Ointments and suppositories can relieve skin cracks in the rectum which hurts.
Drugs that suppress inflammation
A group of drugs commonly used in ulcerative colitis is called 5-ASA. The drugs reduce inflammation of the intestine. This group of medicines can be used both as an anti-inflammatory if you have ongoing inflammation and as a preventative treatment.
The drugs are available as tablets or capsules. It is also available as suppositories, foam or liquid that you bring into the rectum.
What kind of drug you get depends on your complaints and what part of the gut is inflamed.
Medicines with cortisone reduce the inflammation of the intestine. How much dose and how long you need cortisone medication varies.
Follow the instructions given to you by your doctor
It is important that you follow the prescription and dosing schedule given to you by your doctor when taking cortisone in tablet form. Most treatments with cortisone are terminated by reducing the dose incrementally, sometimes for several months. Do not end the treatment without talking to your doctor.
Medicines that affect the immune system
Sometimes ulcerative colitis is treated with so-called immunomodulatory drugs or biological drugs. These drugs affect the immune system and are often used to suppress inflammation of the intestine.
The drugs also reduce the risk of the inflammation coming back. You can sometimes use this type of treatment for several years.
Treatment of ulcerative colitis with surgery
Most people who have ulcerative colitis do not need surgery, but it can sometimes be necessary:
- If you have severe problems despite using medicines.
- If you get a lot of side effects from the drugs.
- If you have developed cell changes that can be precursors to cancer.
- If children do not grow properly because of the disease.
Which part of the intestine is operated depends on the cause
You may need to remove the colon if it is highly inflamed or if studies have shown an increased risk of colon cancer. Similarly, the rectum needs to be removed if studies have shown an increased risk of rectal cancer.
You may need an ostomy
When the colon is removed, you get a temporary bag on the stomach where the intestinal contents are emptied, so-called ostomy. When you feel better, the surgeon can connect the bowel ends in a new operation, and the stoma can be removed. The intestinal contents can then pass the same way as before the first operation.
If you have severe inflammation of the large intestine, or in the rectum and around its opening, you may need to have the colon or rectum removed. You will then get a permanent ostomy.
Good to quit smoking before surgery
If you smoke, it is important that you try to stop before an operation. The wounds heal faster, blood circulation and fitness improve so you recover faster.
You should quit smoking altogether, but if it does not succeed then it is good if you can refrain from smoking before the surgery and even the first weeks afterward. If you need help to quit smoking, your doctor can tell you what support is available.
What happens in the body?
Ulcerative colitis is an inflammation of the lining of the rectum, but the colon can also become inflamed. Most often, the mucous membrane of both the colon and rectum is inflamed. If only the rectum is inflamed it is called ulcerative proctitis.
When the mucosa is inflamed, it becomes swollen, sore and bleeds. That’s why you can get bloody diarrhea. You lose both protein and blood if the gut is often inflamed. The inflammation also prevents the intestines from absorbing fluid properly.
The intestine can heal with scar healing and become stiff if the inflammation lasts for several years. This means that the intestine becomes both shorter and narrower. It then becomes less elastic and works worse.
It is probably the body’s own immune system and the bacteria in the gut that causes the cells to attack the intestinal mucosa.
Most sufferers are between 20 and 40 years old, but you can get ulcerative colitis regardless of age.
What is ulcerative colitis?
Ulcerative colitis is caused by both inheritance and external environmental factors. The fact that someone in your family has the disease does not mean that you are certain to have it, but there may be an increased risk.
Pregnancy and ulcerative colitis
Most people with ulcerative colitis can become pregnant and have babies. It is best to be as symptom-free as possible when you become pregnant.
Talk to your doctor if you are or would like to become pregnant. Consult with them which medicines you can use during pregnancy and if you want to breastfeed.
Also, talk to your midwife and doctor about how you want to give birth.
The disease does not make it more difficult to get pregnant
The ability to become pregnant is not affected by the disease itself. However, it can be more difficult to get pregnant if you have had a pelvic reservoir.
No increased risk of congenital injury due to ulcerative colitis
Many people with ulcerative colitis worry that the child will inherit the disease, or that the child will have congenital damage that has occurred during fetal development. But the probability is high that the baby is born without inflammatory bowel disease or congenital damage.
Medicines can degrade sperm quality
Sperm production may be impaired by drugs with active substance sulfasalazine. But as usual, production stops again when you stop using the drug.
Complications and sequelae
The risk of colon cancer and rectal cancer increases
There is an increased risk of colon cancer and rectal cancer if you have had large intestinal inflammation.
If you have had extensive inflammation of the large intestine, you will, therefore, need a regular colonoscopy. Usually, the tests start about ten years after you have been diagnosed with ulcerative colitis.
If you have both the colon and rectum removed, you do not need to be examined, as you will not be able to get cancer in the colon or rectum. However, if only the colon has been removed, the rectum still needs to be examined.
Inflammation in other body parts
Ulcerative colitis can cause inflammation in other parts of the body:
- In the joints.
- In the eyes.
- In the skin.
- In the bile duct of the liver.
You will then be treated by a specialist physician.
To live with ulcerative colitis
Ulcerative colitis is a disease you have throughout your life, but with treatment, it can often be symptom-free. You can also do other things to feel as good as possible.
Learn about the disease and the drugs
Find out which drugs are available, how they work and what side effects are available. Ask your doctor what the treatment looks like, when to take the various drugs and why.
When you learn about how the different drugs work and about the treatment, you may be more involved in the treatment. It can be empowering and motivating when you know why you are using a particular drug, for example.
Also, try to learn what you are reacting to and how the disease works. One tip might be to write a diary. In it you can record how you are feeling, what you have eaten and what you have done. Then it will be easier to see if there is anything in particular that will cause you more or fewer symptoms.
On the patient association Gastrointestinal Association’s website, you can read more about ulcerative colitis and other inflammatory bowel diseases.
Having good contact with the healthcare staff makes you safer. Talk to your nurse and tell him how you would like to be treated. Find out who to contact when you get worse.
Tell about your illness to close relatives and friends
Tell your relatives and friends that you have ulcerative colitis and what it means. Many people with inflammatory bowel disease find it difficult to have a disease that is not always visible. For example, it may be difficult for people in the area to understand how the disease affects you, and that at times you cannot cope as much as otherwise.
Test out what you can eat
There are no specific recommendations on what to eat and drink, or what to avoid. What you can eat is individual and depends on how you feel. Some get worse from eating spicy, deep-fried and high-fiber foods, and from dairy products. Alcohol can also cause you more symptoms.
Try to find out what your symptoms are. If you need dietary advice, please contact a dietitian.
Try to stress less
Some can also alleviate their hassles by changing their lifestyle. If you notice that you are getting worse from stress, you can try to stress less. If you need to help manage your stress, talk to your doctor or nurse in the team.
It is also good to try to sleep just fine.
You need to take care of your teeth
Ulcerative colitis may mean that you have an increased risk of getting holes in your teeth. Therefore, make sure you take care of your teeth and go to a dentist regularly.
You can get a special dental allowance. This means that you pay less when you visit the dentist.
Talk to your employer or student health
Talk to your employer or student health about your work or studies being greatly affected. You may be able to work from home, get an individual study plan, or study remotely.
Drink a lot if you have severe diarrhea
Be sure to drink plenty and get extra salt and sugar if you have severe diarrhea. One sign that you have been getting enough fluid is that you are peeing as much as usual, despite diarrhea.
Meet other people through patient organizations
Sometimes it can be nice to talk to others who also have inflammatory bowel disease. They often understand how you feel without having to tell them too much. When you meet others, you can also get advice and tips on what you can do in different situations.
The Gastrointestinal Association has local associations where you can get in touch with others who have inflammatory bowel diseases. They also have the Youth Association Young Stomach for people up to 30 years with having an inflammatory bowel disease. The site also has personal stories that you can read.
Influence and participate in your care
As a patient, you have under the Patient Act chance to affect your health.
You can seek care at any medical center or open specialist clinic you want throughout the country. Sometimes a referral to the open specialized care is required.
You should understand the information
In order for you to be involved in your care and treatment, it is important that you understand the information you receive from the healthcare staff. Ask questions if you don’t understand. For example, you should receive information about treatment options and how long you may have to wait for care and treatment.
Children should also be involved in their care. The older the child, the more important it is.
You have the opportunity to get help from an interpreter. You also have the opportunity to get help from an interpreter if you have a hearing loss.
If you need tools, you should get information about what is available and how to get it.