IBD, Resources

Common FAQs About IBD

by Trellus Health

What is IBD?  

Inflammatory bowel disease (IBD) is a term for two conditions that are characterized by chronic inflammation of the gastrointestinal (GI) tract. 

This inflammation can cause ulcerations in the intestines in the intestines, other complications such as fistulas or abscesses, and inflammation in other parts of the body such as your joints. They are typically diagnosed with blood tests, intestinal imaging, and/or a procedure that investigates the GI tract with a camera. 

Treating IBD involves medications that reduce inflammation such as short-term corticosteroids, aminosalicylates, biologics, or immunosuppressive drugs. 

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What is the difference between Crohn’s and Ulcerative colitis? 

There are some important distinctions between the two that will affect the type of treatments you may receive. Confused about the differences? Check out this helpful infographic!  

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What does IBD indeterminate mean? 

Indeterminate colitis, or IBD indeterminate, is used as a diagnosis when the disease does not present as typical ulcerative colitis or Crohn’s disease, could have elements of each. Between 10–15% of IBD cases may be classified as indeterminate. In many situations, a diagnosis of either ulcerative colitis or Crohn’s disease may eventually be given. 

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Why do I have IBD?  

The causes of Crohn’s disease and ulcerative colitis are complex. These conditions result from a not fully understood combination of genetic, environmental, and lifestyle factors. Recent studies have identified variations in dozens of genes that may be linked to IBD; however, the role of these variations is not completely understood. 

Ulcerative colitis is more likely to develop in people:  

  • Between the ages of 15 and 30, although the disease may develop in people of any age  
  • Who have a first-degree relative — a parent, sibling, or child — with IBD  
  • Of Jewish descent 

Crohn’s disease can develop in people of any age and is more likely to develop in people: 

  • Between the ages of 20–29  
  • Who have a family member, most often a sibling or parent, with IBD  
  • Who smoke cigarettes  
  • Of Jewish descent 

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What is an autoimmune disease? 

Your immune system protects you from disease and infection by attacking germs that get into your body, such as viruses and bacteria. Your immune system can tell that the germs aren’t part of you, so it destroys them. If you have an autoimmune disease, your immune system attacks the healthy cells of your organs and tissues by mistake. 

There are more than 80 types of autoimmune diseases, and they can affect almost any part of your body. 

No one is sure why autoimmune diseases happen. But you cannot catch them from other people. Autoimmune diseases do tend to run in families, which means that certain genes may make some people more likely to develop a problem. Viruses, certain chemicals, and other things in the environment may trigger an autoimmune disease if you already have the genes for it.  

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Can IBD be cured? 

IBD can be treated, but at present, there is no known proven cure. However, there are treatments that can help reduce symptoms and promote remission. 

Ulcerative colitis is commonly treated with medicines and surgery. Each person experiences ulcerative colitis differently, and doctors recommend treatments based on how severe ulcerative colitis is and how much of the large intestine is affected. Doctors most often treat severe and fulminant ulcerative colitis in a hospital. 

Crohn’s disease is commonly managed with medicines, bowel rest, and surgery. No single treatment works for everyone with Crohn’s disease. The goals of treatment are to decrease the inflammation in your intestines, prevent flare-ups of your symptoms, and keep you in remission. At present, there is no known cure for Crohn’s. 

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Did I do something to cause myself to get IBD? 

No, you did not. While we don’t fully understand what exactly causes IBD, we know enough to confidently say that there are many factors that play a role in the development of IBD that are well outside of anyone’s control. 

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How often will I need a scope? 

The frequency for getting scopes done depends heavily on disease severity, current symptoms, and whether you are in remission.  

Your healthcare provider may want to do additional scopes after starting new medications to ensure that they are effective and that your disease is moving into deep remission.  

If you are currently in remission, your healthcare provider may also want to do a scope to re-evaluate your condition before making changes to treatment. If you are planning on becoming pregnant, your healthcare provider may also want to do a scope to ensure that you are in remission.  

Scopes are also done to screen for colon cancer if those with ulcerative colitis or who have predominantly colonic involvement for Crohn’s disease. These start 8–10 years after diagnosis and then are performed every 1–3 years.  

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Will I be able to go away for college? 

Yes, you absolutely can. But it will take some deliberate planning ahead to make sure that the transition is as smooth as possible. 

In addition to considering your course of study, you also need to consider what managing your IBD will look like in college. Having IBD can create unique challenges in planning for and adjusting to college, and this has been shown in multiple scientific studies (like this one or this one).   

There are some common challenges that people with IBD work through or experience in getting ready for and transitioning to college. But we have created a guide that is meant to help you start thinking through some of them! 

We cover 6 key areas in this guide to help you get ready. 

  • Academics  
  • Transitioning medical care  
  • Residential life  
  • Social support  
  • Dietary considerations  
  • Lifestyle approaches 

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Will I be able to study abroad? 

Yes, but much like transitioning to college, you will need to have a few things lined up before you go. 

Doctor 

Talk with your healthcare team about your plans to study abroad. They may be able to give you some helpful pre-travel advice or advise you on how to find a doctor that can help you while out of the country.  

Medications 

Make sure you have an adequate supply of meds if you take oral medications or injectables. If feasible, you may be able to have a family member or friend visit to help restock on medications if your insurance limits how much can be dispensed at a time. Ask your pharmacist about a vacation override to get a greater supply dispensed before you travel. 

Health insurance 

Look over your health insurance policy to see what it will cover while you are out of the country. Temporary travelers’ insurance may be an option as well if your current plan does not sufficiently cover your needs while overseas. 

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Will I be able to have children? 

Planning for pregnancy can be an exciting time, but it can bring up a lot of concerns — even more so when you have IBD. Having IBD doesn’t limit you from becoming pregnant and, in fact, with preparation and assembling a care team, you can have a healthy pregnancy and baby. 

If you are actively planning to become pregnant or simply curious about the future, we cover the basics of pregnancy and IBD in this post. 

We will cover three main areas

Common concerns  

  • Fertility 
  • Genetics 
  • Medication safety

Preparing for pregnancy  

  • Assemble your team 
  • Getting pregnant 
  • Nutrition 
  • Emotional and mental health 

During pregnancy 

  • Managing inflammation 
  • Nutrition support 

Delivery & postnatal care for mom and baby

  • Mental health
  • Communication

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How do you treat IBD?  

With a chronic condition like IBD, it’s important to treat the disease from many angles.  

  • Medical – this will include testing, medications, and/or surgery 
  • Psychological – this can include treatment such as cognitive behavioral therapy, hypnosis, and relaxation techniques 
  • Dietary – this can include changes to your typical diet with a focus on improving GI symptoms, maintaining a stable weight, preventing, and correcting nutritional deficiencies 

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How will I know if I’m having a flare?  

An IBD flare is a return or increase of your disease symptoms. These symptoms can include:  

  • Diarrhea  
  • Increased frequency or urgency of bowel movements  
  • Blood in stool  
  • Nausea  
  • Vomiting  
  • Abdominal pain  
  • Weight loss  

Sometimes your doctor will confirm that these symptoms are a flare-up of your IBD with blood work or other testing to make sure that they are not associated with anything else such as irritable bowel syndrome (IBS) or infection.  

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How can I avoid having a flare? 

Causes of IBD flares can sometimes be mysterious, but some items are associated with increasing your risk. Flare triggers can vary from person to person, so these don’t necessarily mean they will cause a flare for you.  

  • Missing doses of your medication  
  • Taking non-steroidal anti-inflammatory drugs (NSAIDs)  
  • Taking antibiotics 
  • Smoking  
  • Unmanaged stress 
  • Foods that irritate the GI tract or increase inflammation 

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Can I treat IBD with diet? 

There is a lot of research going on to figure out what the best diet is for IBD, but nothing is set in stone yet. There are some general guidelines for balanced eating patterns that help support or maintain well-being, along with some foods and food additives that are best limited to reduce gut inflammation. 

Eating a well-balanced diet is also important for overall gut health and can help to prevent a flare-up of symptoms. A 2020 review from the International Organization for the Study of Inflammatory Bowel Diseases (IOIBD) has the most updated information for foods to eat or avoid for both ulcerative colitis and Crohn’s disease. 

Their recommendations are summarized in the graphic below. 

Eating well can help manage your IBD, but it is not a cure. Additionally, the foods you eat during remission or when symptoms are reduced will differ from those you can consume during a flare (more on that here). 

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Should I change my diet or lifestyle? 

Meeting with a dietitian can be very helpful for managing symptoms or keeping you in remission. They can recommend diet or lifestyle changes that best suit your needs and are evidence-based.  

When you are in an IBD flare, you may want to adjust your diet to avoid any additional GI irritants. 

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Will I need surgery? 

Even with medicines and lifestyle changes, you may need surgery to treat your IBD. 

For Crohn’s disease, doctors most often recommend surgery to treat:  

  • Fistulas  
  • Bleeding that is life-threatening  
  • Intestinal obstructions  
  • Symptoms when medicines do not improve your condition 

For ulcerative colitis, your doctor may recommend surgery if you have:  

  • Colorectal cancer   
  • Dysplasia, or precancerous cells that increase the risk for developing colorectal cancer  
  • Complications that are life-threatening, such as severe rectal bleeding, toxic megacolon, or perforation of the large intestine  
  • Symptoms that don’t improve or stop after treatment with medicines  
  • Symptoms that only improve with continuous treatment with corticosteroids, which may cause serious side effects when used for a long time 

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Why do I need a scope instead of imaging?  

While imaging is used in the management of IBD, endoscopy is considered the gold standard for evaluating mucosal healing in ulcerative colitis and Crohn’s disease that has predominantly colonic involvement. While doing a scope, your healthcare provider can take biopsies of tissues, which is not something that can be done during imaging.  

With Crohn’s disease that involves the upper GI system or small bowel, it may be difficult to visualize with standard endoscopy and a capsule endoscopy can be done instead. Your healthcare provider may use imaging tests such as abdominal ultrasound, CT scan, X-ray, or MRI to see where the scope can’t reach. 

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What are you looking for when you review my labs? 

When reviewing labs, we are looking for biomarkers that gives us an idea of your level of overall intestinal inflammation, if there is anemia or nutritional deficiencies, levels of medications in the blood, and if you are experiencing any medications’ side effects.  

Important biomarkers include: 

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How do I prepare for an EGD or colonoscopy? 

To prepare for a colonoscopy, you will need to: 

  • You should talk with your doctor about any health problems you have and all prescribed and over-the-counter medicines, vitamins, and supplements you take 
  • A health care professional will give you written bowel prep instructions to follow at home before the procedure so that little or no stool remains in your intestine. A complete bowel prep lets you pass stool that is clear and liquid. Stool inside your intestine can prevent your doctor from clearly seeing the lining. 
  • For safety reasons, you can’t drive for 24 hours after the procedure, as the sedatives or anesthesia need time to wear off. You will need to make plans for getting a ride home after the procedure. 

To prepare for an upper GI endoscopy, you will also need to  

  • You should talk with your doctor about any health problems you have and all prescribed and over-the-counter medicines, vitamins, and supplements you take 
  • Arrange for a ride home 
  • Do not eat or drink up to 8 hours before the procedure 

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How does IBD affect other areas of my body? 

IBD can have multiple extraintestinal manifestations (EIMs). EIMs will occur in some 25–45% of patients with IBD, creating inflammation in areas of the body such as: 

  • Joints 
  • Skin 
  • Eyes 
  • Bones 
  • Liver 

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