Understanding Crohn’s: The Remission and Relapse Cycle
Crohn’s disease is a disorder that causes irritation and swelling in the lining of the digestive tract. It’s a chronic illness, so most people will experience symptoms on and off throughout their life.
Keep reading to learn more about the disease, including the remission and relapse cycle.
Remission and relapse
Inflammation from Crohn’s disease can happen anywhere along the digestive tract. It most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine or colon.
Even with treatment, people with Crohn’s disease will likely experience flare-ups, or periods of time when disease symptoms are very active.
Symptom flare-ups can last weeks to months. During that period, symptoms can vary from mild cramping and diarrhea to more serious symptoms such as severe abdominal pain or bowel blockages.
During periods of remission, no symptoms of the disease are noticeable. The lining of the digestive tract heals and may show no signs of inflammation.
Periods of remission can last anywhere from a few days to years. The main goal of Crohn’s disease treatment is to achieve and maintain remission.
Crohn’s disease treatment
There are two main types of treatment for Crohn’s disease: medications and surgery.
Most Crohn’s disease medications are meant to help reduce inflammation in the gastrointestinal tract. Some medicines are used to treat flares, while others help keep Crohn’s in remission once symptoms have gone away.
Surgery is an option, but it’s usually saved for hard-to-treat disease. Surgery can be used to open a part of the intestine that has become blocked. It can also be used to remove a damaged portion of the intestine.
Surgery doesn’t cure Crohn’s, but it can help to achieve remission.
It’s not always possible to know what causes a flare. Flares happen even while you’re taking your medications as prescribed.
You may experience the same types of digestive problems you had when you were first diagnosed with the disease or you may experience new symptoms.
There are a few known triggers for flare-ups. They include:
- Stress: Stressful situations or strong emotions can lead to flare-ups. It’s impossible to eliminate all stressful-producing events in life, but you can change the way your body reacts to stressful situations.
- Missed medications: Many people with Crohn’s disease take medications on a daily basis, even during periods of remission. It’s not uncommon to miss some medication doses, but long periods of not taking prescribed medications can lead to flare-ups.
- Use of nonsteroidal anti-inflammatory drugs (NSAIDs): Some commonly used medications, including aspirin, naproxen (Aleve), and ibuprofen (Motrin, Advil), are possible triggers for flares.
- Use of antibiotics: Using antibiotics can lead to changes in the bacteria that normally live in the intestine. This can lead to inflammation and symptom flares in some people with Crohn’s.
- Smoking: People who smoke tend to have more flares than nonsmokers.
- Certain foods: Some people have diet-related flare triggers. No one type of food aggravates symptoms in all people with Crohn’s. Keeping a food diary to identify any potential triggers can help you to better understand how your diet relates to your symptoms.
Crohn’s is an unpredictable disease and is not the same for everyone. Your relapse and remission cycle will vary depending on your symptoms and environmental triggers.
Crohn’s Disease: Management and Treatment
How is Crohn’s disease treated and managed?
Treatment for Crohn’s disease depends on how severe the disease is, and where it is located. Because the disease can sometimes go into remission on its own, it is not always possible to determine whether a specific treatment has been effective. When Crohn’s disease is active, treatment is aimed at controlling inflammation, correcting shortages in the patient’s diet, and relieving symptoms such as pain, diarrhea, and fever.
Medications are generally the first step in treating Crohn’s disease. Some of these medications include anti-inflammatories, antibiotics, corticosteroids, antidiarrheals, and medications that suppress the immune system. For those patients who have nutritional shortages, supplements are often prescribed.
Even though it cannot cure Crohn’s disease, surgery is sometimes needed for patients whose symptoms do not respond to medications. Surgery can correct perforations (holes), blockages, or bleeding in the intestine. Unfortunately, Crohn’s disease often returns to the area next to where the inflamed part was removed. You should discuss with your doctor all possible options before deciding upon surgery.
In managing Crohn’s disease, it is very important to maintain a healthy lifestyle, even when the disease goes into remission for long periods of time. You can do this by exercising regularly and eating a healthy diet. If you smoke, quitting can also help prevent symptoms from coming back. Studies have shown that smokers are at a higher risk of developing Crohn’s disease than non-smokers, and that smokers with Crohn’s disease tend to have a more severe course than non-smokers with Crohn’s disease.
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“It was hard to hear that the drug that had given our son his life back for two years needed to be stopped right away,” says Amy. “It was like they were telling me to leave my son in the middle of the Atlantic Ocean with no life jacket. But thankfully, his kidney function went back to normal in time, and his disease stayed under control with the change in medication.”
Growing normally again
Now 12, Will has been on the same immunomodulator ever since. In addition to his medication, he has some restrictions on his diet. While he is not in remission, his symptoms are all under control and manageable. Will continues to hit all normal developmental milestones, and he’s in the middle of the curve for his age for both his growth and weight.
Crohn’s doesn’t stop Will from enjoying his passion — basketball. Will and his twin brother, Andrew, both love the sport and are talented players. Will makes three-pointers look easy in games and is unbeatable at the foul line. He was the New Jersey state champion in the free-throw competition at 11, and repeated the feat when he was 12.
Will does well in school, and is on the honor roll. He particularly loves science. Inspired by Dr. Mamula and the team at CHOP, he is very interested in medicine and would like to be a doctor one day. Dr. Mamula has encouraged Will’s interest, and even gave him a tour of an operating room.
“Although Will’s case is complicated, he’s a healthy Crohn’s patient,” says Amy. “We realize things could be a lot worse, and we are lucky he does so well. I can’t say enough good things about CHOP. Dr. Mamula and his team worked quickly to make a diagnosis and begin treatment. They didn’t give up when one treatment failed and a different approach was needed. And Will feels very comfortable at CHOP. Every time I see Will out on the court I know that we wouldn’t be here without the great care from Dr. Mamula and his staff.”
“It has been a long journey,” says Walt. “We are in a really good place right now. We’ve learned that with his disease there will be periods of remission, periods where the disease is active.”
“But we feel safe at CHOP because we know that they will take good care of Will because they are the leading center for IBD care in the country.”
Will understands how important it is to participate in research studies to find better medications and ultimately a cure to his disease. Will’s twin brother Andrew recently said, “Maybe by the time Will goes away to college he will be cured so he doesn’t have to take his pills anymore.” Amy and Walt share that hope. They support ongoing research on improved treatments and, ultimately, a cure for IBD.
Miriam Kaltz was 22 when she visited her GP with abdominal pain that was making her reluctant to eat. The suggested diagnosis? That she had an eating disorder. “My doctor thought I was using this pain as an excuse not to eat,” she says. “I hadn’t even noticed I’d lost weight; I was more concerned about the symptoms and finding out what was causing them.”
Kaltz, now 24 and a qualified vet, saw another GP and was referred to a consultant gastroenterologist. Following an MRI scan and a biopsy, she was finally diagnosed with Crohn’s disease, a condition affecting the intestine that can result in severe diarrhoea, cramps, weight loss and extreme tiredness.
An estimated 250,000 people in the UK suffer from Crohn’s and new figures suggest the disease is on the increase. According to the Health and Social Care Information Centre, the number of 16- to 29-year-olds receiving hospital treatment for the condition has risen 300% in the past 10 years, to almost 20,000. Why, then, is it still so hard for doctors to recognise the symptoms?
Janindra Warusavitarne, consultant colorectal surgeon at The London Clinic, says the early indications of Crohn’s can be vague. “GPs see a lot of abdominal pain. They can’t assume it’s all Crohn’s, especially as it could be something more acute,” he says.
Kaltz is particularly frustrated by recent media reports that the rise in young people with Crohn’s could be caused by junk food. “I didn’t eat a single takeaway when I was growing up – my mum has Crohn’s so it just wasn’t something we did as a family.”
The reports have also pointed at an increase in the use of antibiotics. “It’s not as simple as saying this isn’t true,” says Warusavitarne. “Crohn’s is an autoimmune condition, and there’s obviously some trigger that causes the immune system to go into overdrive; we just don’t know what that is. Junk food, antibiotics – it could be both, or neither. There’s definitely a genetic link, but to say Crohn’s is caused by x, y, or z – it’s a much more complex disease than that.”
Emma Kay-Flowers was diagnosed with Crohn’s at the age of 17, after five months of symptoms. “I was so ill, I was just relieved to find out what was wrong with me and that there was medication that could ease my abdominal pains. I started on it right away, then saw a dietician.”
Kay-Flowers, now 21, was advised to cut out all high-fibre foods and eat refined carbohydrates. “I tried this approach – I wanted to feel better. But it just seemed to make me feel bloated, and I had regular flare-ups. So I decided to swap all the white carbs for brown, and cut down on sugar. Gradually, my symptoms eased until, after two years, the flare-ups subsided completely.”
In August 2013, Kay-Flowers went for a regular checkup. “My stomach felt completely different – like it had before my diagnosis. My consultant sent me for an MRI scan, which showed no signs of inflammation, just scar tissue where the Crohn’s had been before. He took me off the medication and I was discharged. I’ve been well ever since.”
This kind of recovery isn’t common, but it does happen, says Warusavitarne. “The immune system fights and fights against itself and then it can just burn out and give up. But for most patients, a multidisciplinary approach to treatment is what works best.”
This often means gastroenterologists and colorectal surgeons sitting down together with the patient. “We don’t want to medicate, using immune suppressant drugs, and then, only when there are no further options, operate,’ says Warusavitarne. “Surgery is not a failure of treatment – it’s not to be taken lightly, but it can improve quality of life. And techniques in the past 25 years have improved enormously. With keyhole surgery, there is a quicker recovery time and less scarring.”
Surgery for Crohn’s works best when the inflammation of the intestinal tract is localised – enabling the diseased section to be removed. Other surgical approaches involve widening narrowed sections of intestine or, less commonly, creating an (often temporary) colostomy or ileostomy.
For Kaltz, having surgery is one of the best decisions she has ever made. Medication helped her symptoms but each time her dose was lowered, they would get worse again. “I was in my fourth year at university, and I was either missing classes because I was in the bathroom, or turning up and having to lie on the floor of the lecture theatre because I was in so much pain. Something had to give.”
A portion of her small bowel was removed by keyhole surgery. “I was nervous, naturally, but I’d spoken to a friend of mine who has Crohn’s and she’d had a similar procedure. She told me that afterwards I’d wonder what on earth I’d done, and she was right: I did feel pretty awful at first.”
Kaltz made steady progress, though, and was out of hospital in eight days. She is careful about what she eats now, completely avoiding certain trigger foods (in her case, dairy produce, garlic, onions and wine). “I feel surgery has given me the chance to be healthy again,” she says. “Everyone’s Crohn’s is different, but this is what worked for me. And I’m getting to do the job I’ve studied for years for.”
If a person does not respond to sulfasalazine, the doctor may prescribe other types of drugs that contain 5-ASA. These other products include:
- olsalazine (Dipentum)
- balsalazide (Colazal, Giazol)
- mesalamine (Asacol, Lialda, Pentasa, and others)
Corticosteroids such as prednisone are another class of drugs that reduce inflammation. A doctor is likely to prescribe an initial large dose of prednisone when the disease is very active. The dose is then tapered off. A problem with corticosteroids is the large number of possible side effects — some of them serious — such as a higher susceptibility to infection and stomach ulcers.
Crohn’s disease may also be treated with drugs that stop the immune system from causing inflammation. Immunomodulators change the way the immune system behaves. Immunosuppressants decrease the activity of the immune system. Immunostimulators increase the activity. Immunosuppressants prescribed for Crohn’s disease include:
Side effects of immunosuppressants may include:
- higher susceptibility to infection
Biologic drugs such as infliximab (Remicade) or infliximab-dyyb (Inflectra), a biosimilar to Remicade, are often prescribed when a person with Crohn’s disease does not respond to the standard treatments of 5 ASA-containing drugs, corticosteroids, and immunosuppressants. Infliximab is an antibody that attaches itself to the inflammation-promoting protein, tumor-necrosis factor-alpha (TNF-alpha). Other anti-TNF medications are adalimumab (Humira) and adalimumab-atto (Amjevita), a biosimilar to Humira. These drugs are also used to treat other immune system disorders such as rheumatoid arthritis. Certolizumab (Cimzia) is another anti-TNF blocker approved for Crohn’s disease.
There are other biologic alternatives to the anti-TNF blockers. Two drugs block alpha-4 integrin — natalizumab (Tysabri) and vedolizumab (Entyvio). Ustekinumab (Stelara) works in another way by targeting other proteins, IL-12 and IL-23.
Other substances that may be prescribed to treat Crohn’s include:
- Antibiotics to treat bacterial infections and overgrowth of bacteria in the small intestine; types of antibiotics commonly prescribed include:
- ampicillin (Omnipen)
- fluoroquinolones (Ciprofloxacin)
- metronidazole (Flagyl)
- Antidiarrheal agents to stop diarrhea
- Fluid replacements to counteract dehydration
- Nutritional supplements to provide the nutrients that may not be absorbing properly