Frequently asked questions and IBD myths

I'm sure some people will still not believe a few of our facts, regardless of the purpose of this page being to only state facts. If you do want to check for yourself, please ensure your sources are reliable and not a random forum post/blog, which is based on opinion that absolutely anyone could write. Here is a list of reliable resources for you to peruse at your leisure should you have any queries.

#IBDSuperHeroes is dedicated to sharing factual information. All facts are checked more than once to ensure their reliability.

For more information about Crohn’s Disease and Ulcerative Colitis, visit the #IBDSuperHeroes “About IBD” page. 

IBD is not like, or in any way related to, IBS

The conditions and treatments are completely different.

Irritable Bowel Syndrome (IBS) is a common condition that affects the digestive system without any evidence of underlying damage. Inflammatory Bowel Disease (IBD) is an immune-mediated disease that attacks healthy cells in the body, specifically throughout the digestive tract (in Crohn’s Disease) and the large intestine (in Ulcerative Colitis). This causes damage that is often irreversible and may result in surgery to remove the parts which are the worst affected.

Colitis and ulcerative colitis are NOT the same

The term colitis simply means that there is inflammation in the colon.

This is why the form of Crohn’s Disease which presents in the colon is called Crohn’s Colitis. 

Colitis (inflammation of the colon) can be caused by a number of things such as IBS or food poisoning.

Ulcerative Colitis is a form of inflammatory bowel disease.

There is NO CURE

No, really, there isn’t. The symptoms of Inflammatory Bowel Disease are treated with medications and/or surgery. Some lifestyle changes and alternative therapies may help some people. IBD might go into remission. Remission simply means that the disease is not active right now, but, the person still has IBD, which could flare again at any time due to the unpredictable nature of Crohn's Disease and Ulcerative Colitis.

Standard tests such as blood tests and stool samples do NOT definitively diagnose a flare

Many people with IBD will tell you that while their blood tests and stool sample results come back "within normal margins”, their disease is actually currently active. There are a number of other ways to determine whether someone is flaring such as a colonoscopy, MRI, capsule endoscopy, flexi-sigmoidoscopy, and biopsies.

Having an ileostomy or colostomy does not mean that you can eat whatever you want
Active disease, strictures and adhesions are some of the reasons that may prevent an ostomate from being able to eat everything and anything. Surgery can also lead to issues like bile acid malabsorption (BAM) and short bowel syndrome (SBS), which may also affect what can be tolerated. Every ostomate is different, just like everyone with IBD.

You can be flaring and NOT lose weight

Weight loss is a symptom of a flare, but not losing, or gaining weight does not mean that someone is not flaring. There's a number of reasons for weight gain during a flare. Many people with IBD can’t eat as healthily as they would like to because they can't tolerate the foods. For example, fruits and vegetables, which are full of soluble and insoluble fibre may have to be avoided to slow down the frequency and urgency of bowel movements.
Exercise can be difficult due to abdominal and joint pain, chronic fatigue, and the urgent need to use the toilet.
Side effects of some treatments also include weight gain.

You CAN be very sick without looking like you are

There is a reason that Crohn’s Disease and Ulcerative Colitis are referred to as invisible illnesses. It may be noticeable to close family and friends, who see the person regularly. But, for most people, people with IBD look just like everyone else. There are no outward signs of the disease and struggle. It’s easy to mistake someone with IBD for a healthy person just by looking at them.

Controlled inflammation in your digestive system does NOT mean you are well

Having no active inflammation in your digestive system does not mean that someone is “well”. Many people with IBD experience extra-intestinal manifestations (EIMs) such as fatigue and joint pain when their IBD is in remission (see extraintestinal manifestations for more info). Plus, things like scarring, adhesions, and strictures from previous flares can all lead to continued functional issues and pain.

You can be very ill and not be in the hospital

It's often assumed that because someone isn't in the hospital, is making it into work, or is not screaming in pain, they are “not that sick”. Chronically ill people get used to functioning with a certain level of pain or discomfort. Some of that pain can be caused by things that we just have to live with; strictures for example. 

Most of the time, a hospital can’t do anything for someone with IBD other than pain relief or surgery. We just have to wait for a treatment to be effective, which can take some time. Many people with IBD function on a daily basis with the help of a bucket load of medication, which often includes a hefty dose of painkillers.

More than 16mg of Loperamide (Imodium) in a day will not leave every human constipated

According to NICE, the maximum dose of loperamide is 16 mg per day. This guidance is based on a normal healthy adult with their whole digestive system intact and is not the same for people with IBD, especially when they have part of their intestine removed. Many of these people take a lot more, plus other medications such as codeine to slow things down on a daily basis.

Diarrhoea AND constipation are both symptoms of IBD
People often assume that IBD symptoms include diarrhoea, but not constipation. Diarrhoea and constipation are both symptoms of Crohn's disease (CD) and Ulcerative Colitis (UC).
It is most common in Proctitis, but can also be caused by other things such as strictures in the intestine and dietary restrictions. Strictures are often a result of scarring and adhesions due to active disease and/or surgery.

Ulcerative Colitis does NOT always ONLY affect the colon and present in a continuous pattern

Extent and distribution can also vary with time and treatment. Rectal sparing, discontinuity between sites, and patchy or focal changes within sites are recognised features of longstanding UC. See full blog here

You CANNOT have Crohn's Disease and Ulcerative Colitis

Crohn’s Disease and Ulcerative Colitis cannot be present in the same patient. All other facts on this page I will leave you to check by yourself. This one, I would like to provide the information for. 

IBD is NOT contagious

Crohn’s Disease and Ulcerative Colitis are not bacterial, fungal, or any other type of infection which can be passed on. We cannot infect you with our immune-mediated disease!

Ulcerative colitis and Crohn's disease are not cured by surgery

Ulcerative colitis (UC) and Crohn's disease (CD)  have a large list of symptoms. Removing the colon and rectum in UC, and sections of the affected intestine in CD will eliminate the symptoms caused by the intestinal manifestations in that area. The extraintestinal manifestations may remain. Surgery can also lead to further issues such as scarring, adhesions, short bowel syndrome, and bile acid malabsorption. In CD, the disease can flare in the remaining digestive system.

For people with IBD, standard digestion time may not be applicable

The speed at which food passes through a normal and healthy individual may be much slower than for those with IBD. Malabsorption is common because food does not stay in the digestive system long enough to be absorbed properly,. Active disease and scarring can also cause malabsorption. For those who have had parts of their intestine removed, that transition is even faster. A study by the Mayo Clinic in the 1980’s showed the average time food takes to pass just through the colon was 33 hours for men and 47 hours for women. Remove the colon from the equation and you’ve lost a very large percentage of the overall time from mouth to evacuation. Some of those with no colon, an ileostomy or a jpouch can start passing food they ate under an hour ago.

Diet and exercise will not cure Inflammatory Bowel Disease

Firstly, There is NO cure. What one person with IBD can tolerate may be completely different from another person with IBD.

Some Crohn's disease and ulcerative colitis symptoms may be eased by dietary modifications, and for others, the same modifications may increase symptoms. There is no one size fits all – see Eating and Drinking with IBD. Due to the extra-intestinal manifestations and related conditions which commonly occur in IBD, exercise can be difficult.