Normal activities cause daily challenges for people with IBD

IBD, a category that includes both ulcerative colitis and Crohn's disease, is typically diagnosed between the ages of 15 and 30, when people are in the prime of their lives, busy with school, going to parties and concerts, or starting their careers.

Catharine Smart was a normal teenager, busy with friends, parties, and the impending start of Grade 12, in August 2006. She only had one problem — for eight months, she'd been troubled by intense fatigue and bloody diarrhea that made it difficult to keep up with her regular activities.

The prevalence and incidence of IBD in Canada are among the highest in the world, according to the Crohn's and Colitis Foundation of Canada.

  • More than 200,000 Canadians have IBD. 
  • Each year, more than 9,200 Canadians are diagnosed with the illness.

"I was really, really tired all the time, and I also had a lot of bleeding as well," the Calgary resident said.

"I was really involved in school, and it was really difficult to keep my grades up in class and be able to do stuff with my friends because I just had to go to the washroom all the time. It was at least once or twice in every class, and missing a lot of time, probably 20 minutes in every class just being in the washroom."

Normal, healthy bowels. When inflammatory bowel disease strikes, the lining of the intestine becomes inflamed and forms small open sores that bleed and produce pus and mucus. This can lead to stomach cramps, bleeding, fatigue, vomiting and diarrhea.
Finally, two weeks before her 17th birthday, Catherine's doctor told her what she had — ulcerative colitis, a condition that falls under the term inflammatory bowel disease, or IBD.

In people with IBD, the lining of the intestine becomes inflamed and forms small open sores that bleed and produce pus and mucus. This usually causes stomach cramps, bleeding, fatigue, vomiting, diarrhea, and itchiness or irritation of the anus.

IBD — a category that includes both ulcerative colitis and Crohn's disease — is typically diagnosed between the ages of 15 and 30, when people are in the prime of their lives, busy with school, going to parties and concerts, or starting their careers.

What causes IBD?

The immune system is the body's system of defence against harmful agents, like viruses or bacteria. In the person with inflammatory bowel disease, researchers believe something turns the immune system on and it becomes unable to shut itself off. Crohn's disease and ulcerative colitis seem to be mostly inherited diseases, so the first-degree relatives (brothers, sisters, children and parents) of individuals with IBD seem to be at greater risk.

And that's one of the biggest challenges that people living with IBD face. The disease often causes them to avoid many activities and situations because of the fear that they might not have easy and quick access to a washroom, explained Dr. George Tolomiczenko, executive director of research at the Crohn's and Colitis Foundation of Canada.

Everyday challenges

That's why the foundation decided to launch the Crohn's and Colitis Declaration, to help lead the discussion about the difficulties people with IBD face every day and to help improve their quality of life. One of the reasons for the lack of widespread knowledge about IBD, Tolomiczenko said, is that people with the disease are embarrassed to talk about it.

"Just the fact that it can be difficult to find a bathroom to get quick access to, the fact that not too many people talk about these diseases openly," he said.

"Once people are educated about what it's like living with the disease, I think we can begin to reduce the stigma attached to the disease for either of these diseases."

Poor nutrition can result in:

  • Anemia (shortage of red blood cells).
  • Bleeding, bruising.
  • Bloating, diarrhea, gas.
  • Bone fracture and pain.
  • Delayed growth. 
  • Interruption of menstrual periods.
  • Lip and mouth sores.
  • Muscle spasms.
  • Muscle wasting.

Another challenge to IBD is that people with the ailment have to avoid certain foods that worsen their diarrhea, gas and stomach cramps. Some need to cut down on their fibre or dairy intake, others find they have fewer symptoms when they cut back on fats or sugar.

"Nuts and seeds are kind of my big thing, just getting caught or irritating my intestine, and it's not worth the risk of something happening," Smart explained. "I also find the skin of a lot of fruits and vegetables are hard to digest. So I peel my apples and I eat the foods that don't have skins."

As if having to avoid certain foods was not enough, people with IBD sometimes also have a poor appetite. A few even develop malnutrition because of their limited diet and because their digestive tract is not able to absorb all the nutrients from food. These people usually need to take vitamin and mineral supplements, and sometimes nutritional formulas. 

Medical treatment can be daunting

Some people with IBD also need to have blood transfusions when they lose too much blood from the ulcers in their bowels. In Smart's case, she had to have five transfusions because she had lost so much blood before she was diagnosed.

The most common complication of Crohn's disease is blockage or narrowing of the intestine. This happens when the bowel wall swells or thickens with scar tissue. The passage becomes smaller and smaller, until it is completely closed.

Fistulas are also common, and happen when ulcers in the intestine break through the wall of the bowel and tunnel into tissues of surrounding organs, such as the bladder, vagina, anus, rectum or skin. This can cause infections and abscesses to form. Antibiotics can help, but often people with fistulas need to have surgery to treat them.

Medications for IBD

Doctors use a "stepwise" approach to treat IBD. With this approach, the least harmful drugs or those taken for short periods are used first. If they fail to provide relief, they move on to the next level.

5-ASA compounds help the body control inflammation and need direct contact with the inflamed bowel. Corticosteroids also work by decreasing inflammation but don't need to be injected directly into the inflamed bowel.

Immunomodulators weaken the activity of the immune system, which in turn decreases the inflammation. These drugs are used when anti-inflammatories don't work.

Antibiotics are used sometimes if there is a bacterial infection in the bowel.

Biologic therapies, the newest drugs, target a specific molecule called tumour necrosis factor alpha, which is known to play an important role in the inflammatory process.

Patients usually need to take medications to control the inflammation in the intestine. The most common are prednisone, which is a synthetic form of cortisone, and anti-inflammatory drugs called 5-ASA compounds. These drugs work by directly decreasing the inflammation in the bowels, much like arthritis medications work to decrease inflammation in joints.

Often, people also need to take other medications, such as antibiotics for bowel infections, drugs to suppress their immune system, and pain killers to help with the stomach cramps.

But several of these medications are expensive and can be difficult to get if a person doesn't have private drug insurance, said Dr. Kenneth Croitoru, a gastrointestinal specialist and researcher at Toronto's Mount Sinai Hospital. Although provincial government programs cover the costs of some of these drugs for individuals without private insurance, the programs don't cover some of the drugs that work best in people with IBD.

"The government has a real challenge there, because not just Crohn's disease and ulcerative colitis, but many other diseases are looking at these types of drugs, and they're a huge expense," Croitoru explained.

Side effects and surgery

Although the drugs used to treat symptoms can make a real difference to the quality of life of people with IBD, certain people have to stop taking them because of their side effects. Prednisone can cause mood swings, increased hair growth, night sweats, acne, headaches and weight gain, and people who take it sometimes develop a rounded face shape and increased appetite. People taking prednisone for long periods sometimes lose density in their bones.

Two surgical options for people with ulcerative colitis are:

Ileostomy. The surgeon makes a small opening in the abdomen and attaches the end of the small intestine to it. Waste travels through this opening and is collected in a pouch, which has to be emptied regularly.

Ileoanal anastomosis, also called a pull-through operation. The surgeon removes the colon and the inside of the rectum, but leaves the outer muscles of the rectum. The small intestine is attached to the rectum and the anus, so that waste can pass through the anus in the usual manner.

Now 20 years old and enrolled in the business program at Mount Royal College in Calgary, Catharine Smart has gone through several different drug regimens and surgery to remove her entire colon. This is the only permanent cure for ulcerative colitis, but it is used only for those patients who have severe disease and don't improve with drug treatments. The surgery is not an option for patients with Crohn's because their inflammation and ulcers are usually located in various places along the whole intestine, not just in the lower bowel.

The surgeons created a pouch out of Smart's small intestine and attached it to her rectum, so she doesn't need to wear an external bag to collect her body's waste.

"The surgery definitely improved my life. I don't regret that decision at all," she said. "I'm not in the bathroom constantly, and right now I'm probably the healthiest I've been in 2½, three years."

"There are still a lot of foods that I can't digest, that I stay away from," she added. "I still go to the bathroom fairly often, but it's kind of a regular amount of times. Just because I don't have my [large] intestine, I have a pouch made out of my small intestine and it just can't hold the same amount."

For Smart, the ordeal of having to rush to the hospital for transfusions was traumatic and still brings back negative associations.

"I'm still working through it all and processing it," she said. "I had a panic attack a couple of days ago just from being on a road that I'd been on in an ambulance. I was driving to work and I had a panic attack."

For people newly diagnosed with IBD, Smart recommends taking the time to accept the changes they'll go through as a result of their illness.

"I would probably tell them that it's not the end of the world. It's definitely going to take an adjustment, and you have to process it in your own way. But if you keep on top of your symptoms and keep really good records of what's going on, keep in contact with your doctors, you can live about as normal as you can," she said.

"I still go to school. I work. I go out with my friends. It's an adjustment on your life and it tweaks everything in a new direction, but it's not something that you can't handle.

"And there's a lot of people in Canada that are living with the disease, and I know a lot of people don't like to talk about it, but I've found that the more I talk about it, the more people I meet, and the more people I meet with the disease, the easier it is to cope because you realize you're not alone. There are so many people out there with the disease."