Is there a cure?

No, IBD cannot be cured. There will be periods of remission when the disease is not active. Medicines can reduce inflammation and increase the number and length of periods of remission, but there is no cure.

How long will IBD last?

IBD is a lifelong (chronic) condition. A few patients find their disease becomes milder (“burned out”) after age 60, but many do not.

Do I have to take medicine forever?

Probably. IBD is a chronic disease, and most patients need a maintenance medicine to ease symptoms and reduce the number and severity of flares. Most maintenance medicines act fairly slowly, so if you have an active flare, you may need to take additional medicine temporarily.

Are there some medicines that can get me out of a flare quickly?

Yes. These are not necessarily used long term because of side effects. Patients will often change over from rescue medicines to long-term maintenance medicines. Rescue medicines include steroids such as prednisone and cyclosporine.

Why do I need to keep taking medicines when I feel well?

It’s important to keep taking maintenance medicines because they reduce the recurrence of flares. For biologic medicines (like infliximab, adalimumab, and certolizumab) it is important to keep taking them to prevent the formation of antibodies against the medicine. The formation of antibodies can lead to allergic reactions and loss of benefit from the medicine. Taking biologic medicines regularly can maintain their good effect.

Why might I need a colonoscopy?

A colonoscopy is used to make the initial diagnosis of Crohn’s disease or ulcerative colitis. A colonoscopy can also assess the symptoms of IBD flares and the response to treatment. A third important use of a colonoscopy is to screen for early colon cancer or to look for abnormal cells that may turn into cancer cells.

Will surgery cure my IBD?

No, but surgery can be very helpful. For patients with ulcerative colitis, removal of 97% of the colon dramatically reduces symptoms. Surgery is no picnic, but it can often dramatically improve the quality of life of someone with severe colitis. There are several ways to reconnect the intestine after the colon is removed, each of which has pros and cons.

The effect of surgery for Crohn’s disease can often be like pushing a giant reset button, as surgery can remove scarred tissue and strictures, fistulas and abscesses that cause a lot of symptoms for which medicines are not very effective. After surgery for Crohn’s disease, maintenance medicines are often more effective and help prevent further complications that lead to requiring further surgery in the future.

Is it dangerous to suppress (weaken) the immune system for the rest of my life?

There are some risks in suppressing or weakening your immune system. Viruses that stay in your body, like the chicken pox virus, are more likely to be activated (cause shingles) in people taking immunosuppressives such as azathioprine and methotrexate. Bacterial infections of the skin and soft tissues are more likely in people taking anti-TNF medicines. However, for many, all these risks are outweighed by the risks of complications of IBD, which accumulate over time.

You can reduce some of these risks. You can discuss early vaccination with your doctor. Also, after some years in remission some patients take a “drug holiday” and stop the immunosuppressive medicine with close monitoring by their doctor for any recurrence of inflammation. If you are on anti-TNF therapy and you are in the final trimester of pregnancy or going to have an operation, your doctor may adjust your dosing schedule to minimize complications.

Could any condition other than IBD be causing my symptoms?

Yes. Patients with IBD can get IBD-like symptoms for other reasons. Infections can cause diarrhea. Previous inflammation can cause increased sensitivity of the nerves in the intestine and make you very sensitive to intestinal cramping. Overgrowth of bacteria in the small intestine can cause cramping and gas. This is why you should visit a health care provider if there is a change in your symptoms because it might not be a flare of IBD.

Why shouldn’t my pain be treated with narcotics?

Narcotics treat the symptoms, not the cause (inflammation) of IBD. Narcotics can make the inflammation worse. Research has shown that patients with IBD who use narcotics are more likely to have severe abdominal infections (abscesses), strictures and intestinal obstruction. We try to avoid prescribing narcotics for IBD because they seem to be harmful.

Why not just take prednisone whenever I have a flare?

Prednisone has many side effects, including bone loss, diabetes, cataracts, emotional distress and severe acne, which make us want to minimize the use of prednisone as much as possible. In addition, the longer prednisone or other steroids are used, the less likely they are to work. That’s why we like to save prednisone for when (and if) you really need it to rescue you from a flare. Maintenance medicines are designed to reduce your flares in both number and severity. Therefore, you shouldn’t need to take prednisone as often. There is also evidence that taking maintenance medicine and reducing inflammation in the colon reduces colon cancer. 

What are some complications of IBD?

Scar tissue may result as the inflamed tissue heals. This scarring can narrow or even block the intestine. The narrowed area is called a stricture. If food can’t move through your intestine, you may have nausea and vomiting. Long-term obstruction raises the pressure in the part of the intestine before the narrowed or blocked area. This pressure can cause the inflamed intestinal wall to burst (perforation). An untreated perforation lets intestinal contents out into the abdomen. This is quite painful and requires immediate surgery. More commonly, the perforation forms a small hole and a tunnel to another organ as a way to release the pressure that builds up from the blockage. This tunnel is called a fistula. A fistula most commonly connects to another part of the intestine, to the skin, to the bladder, or to the vagina. If a fistula does not connect to an exit site, it can form a cavity filled with infected intestinal contents and pus. This is called an abscess.

Long-term inflammation of the colon can lead to colon dysplasia (abnormal or pre-cancerous cells) and colon cancer. Long-term inflammation of the small intestine rarely leads to cancer. However, inflammation of the small intestine can decrease the body’s ability to absorb iron and vitamin B12. This is called malabsorption. A lack of iron or B12 can cause anemia. Blood loss in the stool over time can also cause anemia. People with IBD also often have decreased vitamin D, which can lead to bone loss (osteopenia; osteoarthritis) Steroid use can make bone loss worse. In addition to the intestinal inflammation, you may have inflamed joints, arthritis, skin problems (sore red bumps or ulcers on the skin) and inflammation of the eyes or mouth. If your eyes suddenly become very red and sensitive to light, you need to have eye exam right away.

Crohn’s disease in the small intestine increases the risk for kidney stones and gallstones. The risk is higher if part of the small intestine has been removed. A decreased ability to absorb fat may lead to a specific type of kidney stones called oxalate. People with an ileostomy have no colon and do not develop oxalate kidney stones. A low oxalate diet may be helpful for someone who keeps getting oxalate kidney stones. To see the oxalate content of different foods go to this website. Crohn’s disease also lowers the ability to absorb bile salts, which can lead to gallstones. Poor absorption of bile salts leads to an increase in cholesterol in the bile, which may cause gallstones.