Inflammatory bowel disease FAQs
Gastroenterologist William Faubion, M.D., answers the most frequently asked questions about inflammatory bowel disease.
How much will IBD affect me?
William A. Faubion, Jr., M.D., Gastroenterology, Mayo Clinic: I think most simply, it depends on where in the bowel the disease is affecting and how severe your case is. Every practitioner will tell you that in an ideal world, it shouldn't affect your life at all. It's been well studied that actually inflammatory bowel disease does not significantly change the overall lifespan of the patients. But what we really care about is quality of life. I think for the vast majority of patients that we see, the appropriate medical plan can keep patients generally free of symptoms over the order of one to three years. So I think the biggest ways that the disease is going to affect your life is perhaps you may need to watch a bit what you eat. You'll need to keep in touch with your treatment team and you'll need to take medications as they've been prescribed. But if you do those three things, I think that most practitioners would tell you, we'd rather you not be thinking about your inflammatory bowel disease. Let us worry about that.
Why do people get IBD?
Most of us that are involved in the research of this condition would suggest that there's three major causes that we study for this condition. The first would be the environment. Most of us believe that there's some environmental insult that leads to the chronic inflammation in the intestine. That environmental insult may be dietary. It may be a particular bug that lives in the bowel, or may be a function of that bug, which is also a function of the diet. The second most important thing is having the right genes. The genetics of inflammatory bowel disease is complicated and actually quite widespread. So most people have the right genetic makeup for this disease but don't actually develop the disease. And then the third component is these two things impact on the immune system. And the immune system is what is actually causing the chronic inflammation that's present in the intestine that we prescribe medications to treat.
Can IBD affect my lifespan?
The short answer is no, it will not. There's multiple lines of research that when patients with inflammatory bowel disease are controlled against patients their same age, with their same medical problems, without inflammatory bowel disease, achieve roughly the same lifespan.
Does my diet affect IBD?
If one has a narrowing in the small bowel related to Crohn's disease, something called a stricture, diet becomes very important because if certain patients eat foods that have too much roughage or fiber, then those types of foods can cause an impaction or block the narrowing in the small bowel, leading to signs and symptoms of something we call an obstruction: Belly pain, vomiting, loud noises in the bowel. Another way diet can impact the disease is if you have damage of the small bowel, that can impact your ability to do certain types of functions in the small bowel -- like absorbing dairy products, for example.
Is there any cancer risk from having IBD?
The main risk factor for cancer would be colorectal or cancer of the large bowel. And that comes, we believe, from the chronic inflammation of the colon. That's why it's a good idea to maintain close contact with your treatment team. And that's why we recommend routine colonoscopies, passing the scope up into the colon, looking for those early changes associated with cancer.
What's the risk of passing IBD to my children?
That's a very common and valid concern amongst parents that come for evaluation for their inflammatory bowel disease. Generally the risk is slightly higher for Crohn's disease than ulcerative colitis. But that being said, you're still far more likely to be the only member of your family with this condition, than have a familial what we call penetrance.
Are stool transplants real?
The short answer is yes. This science was actually developed for an infection rather than inflammatory bowel disease. The science has been developed over a period of about 15 years. And it really has come to age with an infection called clostridium difficile or C. diff. Stool transplants now are actually a very common tool to treat recurrent or refractory infection with this C. diff species. Because of the excitement in the infectious disease field or the C. diff field, there are numerous trials that are running in inflammatory bowel disease.
How can I be the best partner to my medical team?
So I think just showing up is the first thing that you can do. We always consider this as a partnership between the patient and the provider. There's a lot to consider when we talk about the medications for inflammatory bowel disease. Some of those medications have risk factors. So those discussions are important, can be complex and can be time-consuming. So showing up, being present, participating in those conversations, and being educated yourself. There are a lot of resources out there to investigate what the risks and benefits to a variety of different strategies might be. Communicating well with your team and again, just being there and showing up.
To help confirm a diagnosis of IBD, you will need a combination of tests and procedures:
- Tests for anemia or infection. Your provider may suggest blood tests to check for anemia — a condition in which there aren't enough red blood cells to carry adequate oxygen to your tissues — or to check for signs of infection from bacteria or viruses.
- Stool studies. You may need to provide a stool sample so that your provider can test for hidden (occult) blood or organisms, such as parasites, in your stool.
During a colonoscopy, the doctor inserts a colonoscope into your rectum to check for abnormalities in your entire colon.
During a flexible sigmoidoscopy, the provider inserts a sigmoidoscope into your rectum to check for abnormalities in your lower colon.
- Colonoscopy. This exam allows your provider to view your entire colon using a thin, flexible, lighted tube with a camera at the end. During the procedure, small samples of tissue (biopsy) may be taken for laboratory analysis. A biopsy is the way to make the diagnosis of IBD versus other forms of inflammation.
- Flexible sigmoidoscopy. Your provider uses a slender, flexible, lighted tube to examine the rectum and sigmoid, the last portion of your colon. If your colon is severely inflamed, your provider may perform this test instead of a full colonoscopy.
- Upper endoscopy. In this procedure, your provider uses a slender, flexible, lighted tube to examine the esophagus, stomach and first part of the small intestine (duodenum). While it is rare for these areas to be involved with Crohn's disease, this test may be recommended if you are having nausea and vomiting, difficulty eating, or upper abdominal pain.
- Capsule endoscopy. This test is sometimes used to help diagnose Crohn's disease involving your small intestine. You swallow a capsule that has a camera in it. The images are transmitted to a recorder you wear on your belt, after which the capsule exits your body painlessly in your stool. You may still need an endoscopy with a biopsy to confirm a diagnosis of Crohn's disease. Capsule endoscopy should not be performed if a bowel obstruction is suspected.
- Balloon-assisted enteroscopy. For this test, a scope is used in conjunction with a device called an overtube. This enables the technician to look further into the small bowel where standard endoscopes don't reach. This technique is useful when a capsule endoscopy shows abnormalities, but the diagnosis is still in question.
- X-ray. If you have severe symptoms, your provider may use a standard X-ray of your abdominal area to rule out serious complications, such as megacolon or a perforated colon.
- Computerized tomography (CT) scan. You may have a CT scan — a special X-ray technique that provides more detail than a standard X-ray does. This test looks at the entire bowel as well as at tissues outside the bowel. CT enterography is a special CT scan that provides better images of the small bowel. This test has replaced barium X-rays in most medical centers.
- Magnetic resonance imaging (MRI). An MRI scanner uses a magnetic field and radio waves to create detailed images of organs and tissues. An MRI is particularly useful for evaluating a fistula around the anal area (pelvic MRI) or the small intestine (MR enterography). Unlike CT, there is no radiation exposure with MRI.
The goal of inflammatory bowel disease treatment is to reduce the inflammation that triggers your signs and symptoms. In the best cases, this may lead not only to symptom relief but also to long-term remission and reduced risks of complications. IBD treatment usually involves either drug therapy or surgery.
Anti-inflammatory drugs are often the first step in the treatment of ulcerative colitis, typically for mild to moderate disease. Anti-inflammatories include aminosalicylates, such as mesalamine (Delzicol, Rowasa, others), balsalazide (Colazal) and olsalazine (Dipentum).
Time-limited courses of corticosteroids are also used to induce remission. In addition to being anti-inflammatory, steroids are immunosuppressing. Which medication you take depends on the area of your colon that's affected.
Immune system suppressors
These drugs work in a variety of ways to suppress the immune response that releases inflammation-inducing chemicals into the body. When released, these chemicals can damage the lining of the digestive tract.
Some examples of immunosuppressant drugs include azathioprine (Azasan, Imuran), mercaptopurine (Purinethol, Purixan) and methotrexate (Trexall).
More recently, orally delivered agents also known as "small molecules" have become available for IBD treatment. These include tofacitinib (Xeljanz), upadacitinib (Rinvoq) and ozanimod (Zeposia).
The U.S. Food and Drug Administration (FDA) recently issued a warning about tofacitinib, stating that preliminary studies show an increased risk of serious heart-related problems and cancer from taking this drug. If you're taking tofacitinib for ulcerative colitis, don't stop taking the medication without first talking with your doctor.
Biologics are a newer category of therapy in which therapy is directed toward neutralizing proteins in the body that are causing inflammation. Some are administered via intravenous (IV) infusions and others are injections you give yourself. Examples include infliximab (Remicade), adalimumab (Humira), golimumab (Simponi), certolizumab (Cimzia), vedolizumab (Entyvio), ustekinumab (Stelara), and risankizumab (Skyrizi).
Antibiotics may be used in addition to other medications or when infection is a concern — in cases of perianal Crohn's disease, for example. Frequently prescribed antibiotics include ciprofloxacin (Cipro) and metronidazole (Flagyl).
Other medications and supplements
In addition to controlling inflammation, some medications may help relieve your signs and symptoms, but always talk to your doctor before taking any over-the-counter medications. Depending on the severity of your IBD, your doctor may recommend one or more of the following:
Anti-diarrheal medications. A fiber supplement — such as psyllium powder (Metamucil) or methylcellulose (Citrucel) — can help relieve mild to moderate diarrhea by adding bulk to your stool. For more severe diarrhea, loperamide (Imodium A-D) may be effective.
These medications could be ineffective or detrimental in some people with strictures or certain infections. Please consult your doctor before taking these medications.
- Pain relievers. For mild pain, your doctor may recommend acetaminophen (Tylenol, others). However, ibuprofen (Advil, Motrin IB, others), naproxen sodium (Aleve) and diclofenac sodium likely will make your symptoms worse and can make your disease worse as well.
- Vitamins and supplements. If you're not absorbing enough nutrients, your doctor may recommend vitamins and nutritional supplements.
When weight loss is severe, your doctor may recommend a special diet given via a feeding tube (enteral nutrition) or nutrients injected into a vein (parenteral nutrition) to treat your IBD. This can improve your overall nutrition and allow the bowel to rest. Bowel rest can reduce inflammation in the short term.
If you have a stenosis or stricture in the bowel, your doctor may recommend a low-residue diet. This will help to minimize the chance that undigested food will get stuck in the narrowed part of the bowel and lead to a blockage.
If diet and lifestyle changes, drug therapy, or other treatments don't relieve your IBD signs and symptoms, your provider may recommend surgery.
Surgery for ulcerative colitis. Surgery involves removal of the entire colon and rectum and the production of an internal pouch attached to the anus that allows bowel movements without a bag.
In some cases a pouch is not possible. Instead, surgeons create a permanent opening in your abdomen (ileal stoma) through which stool is passed for collection in an attached bag.
Surgery for Crohn's disease. Up to two-thirds of people with Crohn's disease will require at least one surgery in their lifetime. However, surgery does not cure Crohn's disease.
During surgery, your surgeon removes a damaged portion of your digestive tract and then reconnects the healthy sections. Surgery may also be used to close fistulas and drain abscesses.
The benefits of surgery for Crohn's disease are usually temporary. The disease often recurs, frequently near the reconnected tissue. The best approach is to follow surgery with medication to minimize the risk of recurrence.
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Lifestyle and home remedies
Sometimes you may feel helpless when facing inflammatory bowel disease. But changes in your diet and lifestyle may help control your symptoms and lengthen the time between flare-ups.
There's no firm evidence that what you eat actually causes inflammatory bowel disease. But certain foods and beverages can aggravate your signs and symptoms, especially during a flare-up.
It can be helpful to keep a food diary to keep track of what you're eating, as well as how you feel. If you discover that some foods are causing your symptoms to flare, you can try eliminating those foods.
Here are some general dietary suggestions that may help you manage your condition:
- Limit dairy products. Many people with inflammatory bowel disease find that problems such as diarrhea, abdominal pain and gas improve by limiting or eliminating dairy products. You may be lactose intolerant — that is, your body can't digest the milk sugar (lactose) in dairy foods. Using an enzyme product such as Lactaid may help as well.
- Eat small meals. You may find that you feel better eating five or six small meals a day rather than two or three larger ones.
- Drink plenty of liquids. Try to drink plenty of liquids daily. Water is best. Alcohol and beverages that contain caffeine stimulate your intestines and can make diarrhea worse, while carbonated drinks frequently produce gas.
- Consider multivitamins. Because Crohn's disease can interfere with your ability to absorb nutrients and because your diet may be limited, multivitamin and mineral supplements are often helpful. Check with your doctor before taking any vitamins or supplements.
- Talk to a dietitian. If you begin to lose weight or your diet has become very limited, talk to a registered dietitian.
Smoking increases your risk of developing Crohn's disease, and once you have it, smoking can make it worse. People with Crohn's disease who smoke are more likely to have relapses and need medications and repeat surgeries.
Smoking may help prevent ulcerative colitis. However, its harm to overall health outweighs any benefit, and quitting smoking can improve the general health of your digestive tract, as well as provide many other health benefits.
The association of stress with Crohn's disease is controversial, but many people who have the disease report symptom flares during high-stress periods. If you have trouble managing stress, try one of these strategies:
- Exercise. Even mild exercise can help reduce stress, relieve depression and normalize bowel function. Talk to your doctor about an exercise plan that's right for you.
- Biofeedback. This stress-reduction technique may train you to reduce muscle tension and slow your heart rate with the help of a feedback machine. The goal is to help you enter a relaxed state so that you can cope more easily with stress.
- Regular relaxation and breathing exercises. One way to cope with stress is to regularly relax and use techniques such as deep, slow breathing to calm down.
Many people with digestive disorders have used some form of complementary and alternative medicine. However, there are few well-designed studies of the safety and effectiveness of complementary and alternative medicine.
Researchers suspect that adding more of the beneficial bacteria (probiotics) that are normally found in the digestive tract might help combat IBD. Although research is limited, there is some evidence that adding probiotics along with other medications may be helpful, but this has not been proved.
Coping and support
IBD doesn't just affect you physically — it takes an emotional toll as well. If signs and symptoms are severe, your life may revolve around a constant need to run to the toilet. Even if your symptoms are mild, it can be difficult to be out in public. All of these factors can alter your life and may lead to depression. Here are some things you can do:
- Be informed. One of the best ways to be more in control is to find out as much as possible about inflammatory bowel disease. Look for information from reputable sources such as the Crohn's and Colitis Foundation.
- Join a support group. Although support groups aren't for everyone, they can provide valuable information about your condition as well as emotional support. Group members frequently know about the latest medical treatments or integrative therapies. You may also find it reassuring to be among others with IBD.
- Talk to a therapist. Some people find it helpful to consult a mental health professional who's familiar with inflammatory bowel disease and the emotional difficulties it can cause.
Although living with IBD can be discouraging, research is ongoing, and the outlook is improving.
Preparing for your appointment
Symptoms of inflammatory bowel disease may first prompt a visit to your primary health care provider. However, you may then be referred to a doctor who specializes in treating digestive disorders (gastroenterologist).
Because appointments can be brief, and there's often a lot of information to discuss, it's a good idea to be well prepared. Here's some information to help you get ready and what to expect from your provider.
What you can do
- Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
- Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you made the appointment.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, including over-the-counter medications and any vitamins or supplements that you're taking.
- Take a family member or friend along. Sometimes it can be difficult to remember everything during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your provider.
Preparing a list of questions beforehand may help you make the most of your visit. List your questions from most important to least important in case time runs out. For inflammatory bowel disease, some basic questions to ask include:
- What's causing these symptoms?
- Are there other possible causes for my symptoms?
- What kinds of tests do I need? Do these tests require any special preparation?
- Is this condition temporary or long lasting?
- What treatments are available, and which do you recommend?
- Are there any medications that I should avoid?
- What types of side effects can I expect from treatment?
- What sort of follow-up care do I need? How often do I need a colonoscopy?
- Are there any alternatives to the primary approach that you're suggesting?
- I have other health conditions. How can I best manage them together?
- Do I need to follow any dietary restrictions?
- Is there a generic alternative to the medicine you're prescribing?
- Are there brochures or other printed material that I can take with me? What websites do you recommend?
- Is there a risk to me or my child if I become pregnant?
- Is there a risk of complications to my partner's pregnancy if I have IBD and father a child?
- What is the risk to my child of developing IBD if I have it?
- Are there support groups for people with IBD and their families?
What to expect from your doctor
Your provider is likely to ask you a number of questions. Being ready to answer them may reserve time to go over points you want to spend more time on. Your provider may ask:
- When did you first begin experiencing symptoms?
- Have your symptoms been continuous or intermittent?
- How severe are your symptoms?
- Do you have abdominal pain?
- Have you had diarrhea? How often?
- Do you awaken from sleep during the night because of diarrhea?
- Is anyone else in your home sick with diarrhea?
- Have you lost weight unintentionally?
- Have you ever had liver problems, hepatitis or jaundice?
- Have you had problems with your joints, eyes or skin — including rashes and sores — or had sores in your mouth?
- Do you have a family history of inflammatory bowel disease?
- Do your symptoms affect your ability to work or do other activities?
- Does anything seem to improve your symptoms?
- Is there anything that you've noticed that makes your symptoms worse?
- Do you smoke?
- Do you take nonsteroidal anti-inflammatory drugs (NSAIDs), for example, ibuprofen (Advil, Motrin IB, others), naproxen sodium (Aleve) or diclofenac sodium (Voltaren)?
- Have you taken antibiotics recently?
- Have you recently traveled? If so, where?
Sept. 03, 2022