Living with Crohn's disease

Receiving the diagnosis of Crohn's disease should concern you, but only to a degree that empowers you and motivates you to seek knowledge and treatment.

Crohn's disease is a serious illness, no doubt, but many people have found ways to control and treat their disease. Likewise, newer medicines for Crohn's disease are helping to reduce the need for surgery and increase the time between flares.

Crohn's disease is one of the two main forms of inflammatory bowel disease and is considered an autoimmune disease.

Crohn's is also a chronic disease without a cure.

While there are a number of medicines to treat the disease, 66 to 75 % of patients with Crohn's disease will need surgery at some point.

Because Crohn's disease is a chronic disease that will be a factor for a person throughout their life, it is critically important to learn about the disease and to find effective and healthy ways to manage this illness.

This article will provide a brief overview of Crohn's disease, its treatment, and practical methods for living with Crohn's disease.

Understanding Crohn's disease - the immune response.

Despite the many ways known to treat the disease, the exact cause of Crohn's disease is still unknown.

Crohn's disease is an autoimmune disease, to be sure, but how it develops is unclear.

The leading theory states that it is a combination of a person's own genetic predisposition to the illness (patients with Crohn's disease are more likely to have a family member with Crohn's disease than the general population), an aberration of a normal immune system, and the presentation of an antigen that mimics something in the bowel. This last feature may sound a bit strange, but it is a feature that is postulated to occur in most, if not all, autoimmune diseases.

This is the theory: normally our immune system works by detecting bits of material and discerning whether it is “self” or “foreign.” These bits (especially when they are foreign) are known as antigens.

These foreign antigens stimulate the immune system to mount a coordinated attack against the invader.

This immune response is great when the antigen is associated with a bacterium or virus, but can be harmful if the antigen is actually self.

This self-versus-foreign confusion is thought to lead to Crohn's disease.

At some point, some agent (perhaps mycobacterium avium paratuberculosis?) presents an antigen to the immune system that it considers it as foreign. However this same antigen resembles a small bit of the intestine itself. The immune system erroneously attacks that foreign and the self i.e. the intestine.

Just as a vaccination lasts for years or life, the immune system will continue to recognize self as foreign and attack the intestine.

This, then, is the nature of Crohn's disease.

What to expect: The symptoms of Crohn's disease

Patients with Crohn's disease must struggle with frequent bowel movements that are often loose and watery. These bowel movements may contain blood or pus as well.

Fever is common as is a crampy abdominal pain. In fact, these symptoms are usually what lead physicians to consider the diagnosis of Crohn's disease.

Since the immune system is working overtime, patients report feeling fatigue, especially during flares, and may experience a joint disease like rheumatoid arthritis.

People with Crohn's disease may have symptoms that involve the eyes, skin, and other organs like the kidney and liver.

Pediatric patients (children) that are diagnosed with Crohn's disease may have delayed sexual maturation and body growth/small adult stature (however some of this may be due to the steroid treatment).

Two of the more troubling complications of Crohn's disease are fistulas and bowel obstructions.

A bowel fistula is the bowel's attempt to find a new route for the passage of feces through the GI tract. Quite astonishingly, a fistula is a sort of tunnel that begins as a finger-like projection from the bowel itself. The projection fuses with another loop of bowel, the vagina, bladder, or outside of the body to redirect the flow of feces. Fistulas are usually caused by a small bowel obstruction in the setting of inflammatory bowel disease and generally need to be treated surgically.

Bowel obstruction, the most common and quite challenging complication of Crohn's disease, occurs when repeated inflammation and scarring of the inside of the intestine causes it to constrict. A constricted loop of bowel slows/stops the flow of fecal material through it. This can lead to a great deal of pain and bloating and may need to be treated surgically if blockage occurs.

Crohn's disease can affect any place in the gastrointestinal tract but occurs more commonly in some places than others.

The position of the lesion along the tract is the main determinant of the symptoms that occur.

The most common location for a Crohn's disease lesion is in the last part of the small intestine (called the ileum) and the first part of the large intestine, near the appendix.

When Crohn's disease affects this part of the GI tract, it is termed ileocolitis (a combination of ileum and colon and the suffix –itis, which signifies inflammation).

Ileocolitis often causes diarrhea and cramping and is associated with pain in the lower right quadrant of the abdomen.

Lesions in the middle (jejunum) and last (ileum) part of the small intestine are especially prone to fistula formation.

When Crohn's disease affects the stomach and first (duodenum) part of the small intenstine, the symptoms are usually those of weight loss, loss of appetite or early satiety (feeling full after little food), and significant upper abdominal pain after meals.

Unfortunately, the weight loss of gastroduodenitis is not a healthy weight loss. Since the duodenum is the site of major calorie absorption, when Crohn's disease affects this area people tend to waste rather than retain lean muscle.

Your experience with Crohn's disease may include some or all of these types and symptoms.

Also, be aware that lesions may migrate over time. This is particularly troubling for people that have a diseased portion of bowel removed during surgery, only to experience a lesion in another area.

Since there is no cure for Crohn's disease, the goal of therapy is to manage symptoms as they occur and to prevent flares of the disease for as long as possible.

Points to a Crohns Disease Diet:

Crohn's disease and a high fiber diet

In someone with established Crohn's disease, bowel motility is of supreme importance—the GI tract should not move too quickly or too slowly.

How does one keep the GI tract moving with regularity?

One of the best approaches is through the judicious use of dietary fiber.

Fiber is not digested or absorbed by the body, but rather stays inside the GI tract from the time it passes the lips until it leaves the anus.

Along its way it can act to draw water into the intestine, especially in those with mild constipation.

Alternatively, it can absorb excess water from inside the GI tract if the intestine is tending toward loose stools.

At least this is how fiber functions in a patient with a normal bowel. In Crohn's disease the use of fiber should be done carefully.

Remember that large amounts of fiber, such as through fiber supplementation, should not be taken at the extremes of bowel motility. In other words, when Crohn's disease is causing a watery diarrhea, dietary fiber will be of little functional help. Likewise, in severe constipation/obstipation, such as what occurs in a small bowel constriction or obstruction, dietary fiber may precipitate a small bowel obstruction and should be avoided.

Crohn's disease and lactose intolerance

For reasons that are unclear, patients that suffer from Crohn's disease are often also lactose intolerant which means they cannot digest the sugar lactose.

Undigested lactose in the gut can lead to bloating, cramping, and diarrhea and can greatly complicate Crohn's disease.

Under the supervision of a physician it may be wise to begin a lactose-free diet and track your symptoms.

Remember though, that since dairy will be eliminated in a lactose-free diet, that calcium and vitamin D supplementation may be required to make up the deficit—another reason to discuss this with your doctor.

Special dietary needs following partial bowel removal

Patients that require bowel resection (removal) may have a number of dietary and vitamin deficits afterwards. This should be discussed at length with a doctor as well.

Crohn's disease drugs / treatments

The involvement of the immune system in Crohn's disease has lead to the development of a number of drugs that inhibit the immune system and keep it from attacking the intestine.

There are two main types of immune system medications that are used in Crohn's disease, namely anti-inflammatories, and immunosuppressants or immune system modulators. Some drugs, such as corticosteroids, act as immunosuppressant and anti-inflammatory.

Anti-inflamatory Crohn's disease Drugs

As the name implies, an anti-inflammatory medicine is one that reduces the inflammation that occurs in Crohn's disease.

Examples include aminosalicylates like Asacol,® Pentasa,® 5-aminosalicylic acid, etc.

These anti-inflammatory medications work in the gut to reduce the inflammatory response (the recruitment and infiltration of immune cells).

Crohn's disease Drugs: The Immune system modulators or immunosuppressants

Immune system modulators or immunosuppressants such as methotrexate and Imuran® (azathioprine) suppress the immune system.

These agents are not specific to Crohn's disease but have been used to suppress the immune system in various situations, most notably following organ transplantation.

These are the “big guns” of Crohn's disease treatment because they are effective, but can inhibit the immune system such that it cannot stave off real infections—when the immune system needs to be at its best.

Antibiotics for Crohn's Disease

Occasionally antibiotics may need to be given with Crohn's disease drugs to prevent simultaneous bacterial infection.

Corticosteroids Crohn's disease Drugs

Finally, corticosteroids like prednisone and methylprednisolone are the mainstay therapies of Crohn's disease.

While effective, these drugs can cause a number of side effects if used at high doses over a long period of time.

The biologic therapies or biologics for Crohn's disease: The newer treatments / medicines

Within the last ten years, medications have become available that offer great hope to patients suffering from Crohn's disease.

The agents, collectively known as biologic therapies or biologics, affect the immune system in relatively precise ways.

The goal, of course, is to inhibit the immune system without disrupting its ability to fight infections.

The biologic therapies attempt to do this by targeting specific elements of the immune response.

Remicade,® the first biologic approved to treat Crohn's disease, binds to a chemical messenger called tumor necrosis factor alpha though its true action may be to destroy T lymphocytes involved in the immune response.

Humira,® Tysabri,® Cimzia,® (as well as a number of biologic therapies in various stages of development) aim to treat Crohn's disease while reducing the need for, dose, and duration of steroid use.

Special mention on bowel obstruction and Crohn's disease treatment / surgery

A comment should be made about bowel obstruction.

There are two different ways that Crohn's disease can cause an obstructed bowel.

Early in the course of the disease, or when Crohn's disease affects an area of the intestine that it has never before affected, the bowel becomes swollen and inflamed. This swelling temporarily constricts the lumen (inside) of the gut. With anti-inflammatory and/or steroid treatment, this swelling and obstruction usually resolves.

The other type of small bowel obstruction occurs when Crohn's disease affects the same site multiple times. In this location, the bowel scars and, just like a scar on the skin, this scar tissue contracts as it forms. If the Crohn's disease affected the entire circumference of a portion of bowel, the scar tissue acts as a noose to squeeze the whole lumen. Bowel obstruction due to scarring can be permanent and often that section of intestine needs to be surgically removed.

Practical considerations for living with Crohn's Disease

Since this article is about living with Crohn's disease, the balance of the document will cover some of the practical considerations for people living with Crohn's disease and some things they can implement today.

Diagnosis of Crohn's disease

If you do not yet carry the diagnosis of Crohn's disease but suspect that you have the disease based on your symptoms, please see your doctor.

It may require a visit to a GI doctor (gastroenterologist) in order to make the diagnosis of Crohn's disease.

Sadly there is no one test that can confirm the diagnosis of Crohn's disease, but a careful history and physical examination can allow a skilled doctor to reach the correct conclusion.

It may be helpful to journal your symptoms and (unfortunately) your bowel habits for your doctor.

After the Diagnosis of Crohn's disease

For people that have received a Crohn's disease diagnosis, make sure that you feel comfortable with your gastroenterologist.

This person will be a part of your life for the rest of it, and you need to trust that person as you navigate through this chronic illness.

If you do not feel comfortable with the first GI doc, it makes sense to get a second opinion with someone that you can trust.

It is usually easier to prevent relapses of Crohn's disease than it is to treat a flare once it begins.

The fewer the number of relapses and the less severe they are when they do occur can help minimize the risk of serious complications and provide a higher quality of life.

Both the treatment and management of Crohn's disease can be difficult.

Remember that this disease requires a lifestyle change—if you put in the effort through maintenance, you will reap the reward of fewer flares.

If you ignore Crohn's disease, it will grab your fullest attention.

Diet will become a major part of your life with Crohn's disease.

Often your gastroenterologist will recommend the services of a registered dietician to help you navigate the dietary choices left to you after the diagnosis.

Make full use of this resource and follow their recommendations.

It is quite difficult to manage your own diet with Crohn's disease, especially at the very beginning. Over time it will become easier, but in the beginning at least, you should take the advice of a professional.

Smoking cessation is both the easiest and hardest intervention in Crohn's disease.

When you quit smoking it can have a direct beneficial impact on your Crohn's disease, yet smoking cessation may feel impossible to you if you have a long-standing habit.

Talk to your primary care physician about smoking cessation programs. Just because you've tried a “million” ways to quit, Crohn's disease may give you the final incentive you needed.

Ask your doctor which medicines you can and cannot take when you have Crohn's disease, especially active disease.

A number of common or over-the-counter medicines (like aspirin!) may not be available to you once you carry the diagnosis of Crohn's disease.

By the same token, never stop a medicine that has been prescribed by a physician unless instructed to do so.

Living with Crohn's disease changes after bowel resection surgery—diet can change considerably.

If you did not see a dietician for Crohn's disease before a bowel resection, it is an absolute requirement afterwards.

Patients often have various vitamin calorie deficiencies once portions of the bowel are removed.

These deficiencies can cause a number of bizarre symptoms—symptoms that the average doctor may not immediately recognize since our overabundant Western diets rarely allow for malnutrition.

Sadly many people incorrectly associate these vitamin deficiency symptoms with the Crohn's disease itself. This may lead to dangerous changes in Crohn's disease medications.

The final practical advice is to keep an eye on your emotional and psychological health.

Many people struggle with Crohn's disease and neglect the psychological impact that this can have on patients and families.

Be vigilant for symptoms of anxiety and depression and share these symptoms with your doctor.

Fatigue may be common in Crohn's disease, but the fatigue of depression may be something different.

Do not be too quick to blame everything that is happening in your body on Crohn's disease.

Living with Crohn's disease can be a physically and mentally draining and the body and mind are only as healthy as the least healthy part.

Written by Michael T. Sapko, M.D., Ph.D., edited by Donald Urquhart, Psychologist.