Life with Crohn’s disease often focuses on just one question: When am I going to have my next flare-up?
The initial relief of being able to put a name to your condition is followed by worries: Why me? What can I do? Will it get better? It’s important not only to work closely with your gastroenterologist, a physician who specializes in diseases of the digestive system, but also to take an active role in your own health to help improve the management of your Crohn’s disease.
Know Your Crohn’s
According to Dr. David Hudesman, Director of the Inflammatory Bowel Disease Center of Beth Israel Medical Center, understanding your disease is the first step. “It’s important for the patient to know where the disease is…and what type of disease you have,” said Dr. Hudesman. “This determines how you’re going to treat the disease.”
While Crohn’s can present itself anywhere along the digestive tract, it most commonly affects a part of the small intestine called the ileum, the large intestine—particularly the colon, or in some cases, both.
There are several subtypes of Crohn’s, according to Dr. Hudesman:
- The most widely recognized is the inflammatory type, which results in the classic symptoms of diarrhea with or without blood, weight loss, and painful cramping.
- A second subtype causes strictures, or narrowing of the intestinal tract, resulting in constipation, bloating, and nausea with vomiting.
- Fistulas, tunnels that are formed when one part of the intestine connects with another part, or with other internal organs like the bladder, are a signature of the third subtype of Crohn’s disease. Cramping, pain, and diarrhea may result, in addition to drainage of mucus or pus.
- A fourth subtype is characterized by fissures, particularly around the anal area. These tears can cause pain and bleeding, and can lead to fistulas.
Many diagnosed with Crohn’s disease may start with the inflammatory subtype, which can progress to fistulas or strictures if left untreated. That’s why it’s particularly important to be diagnosed early and, once you’ve been diagnosed, to work closely with a gastroenterologist who specializes in inflammatory bowel diseases to manage your symptoms.
Preparing for Your Appointment
After your diagnosis, your gastroenterologist is your greatest ally for the ongoing management of your Crohn’s disease. “A specialist in inflammatory bowel diseases can assess the location and severity of your disease, go through what medications are available, then decide on treatment,” said Dr. Hudesman. Communication is essential in helping your physician identify the best treatment.
Review Your Medical History
Dr. Hudesman’s advice includes being prepared to share any medical records, such as past colonoscopies, biopsies, and bloodwork. Tell your doctor if there’s a family history of Crohn’s, as well as any personal history, including when symptoms began and what first brought you in to see the doctor. For example, if you’ve suffered with stomach ailments for years, make sure your doctor knows this information. Think about other key details and bring notes so you can recall this history during your appointment.
Bring a List of Triggers
Maintaining a trigger diary is also helpful. Several of Dr. Hudesman’s patients use free apps for smart phones that make it easy to track triggers, or you can use a small notepad. Include your diet, but don’t forget about other possible triggers too, including: smoking, NSAIDs like Advil, Motrin or aspirin, infections, antibiotics, and even stress.
Be Ready to Discuss Your Symptoms
As you maintain these notes, track your symptoms too. Include information like:
- the number of bowel movements you have in a day
- cramps, abdominal pain, or nausea
- flare-ups, particularly after eating certain foods
- any changes
- how Crohn’s affects your day to day life and if it curtails any social activities
“What’s [also] important for patients to know is that Crohn’s itself can present with symptoms outside the intestine,” said Dr. Hudesman. “They should be able to contact their doctor, and be aware that this could be related and could signify worsening of disease.” These other symptoms include arthritis or joint pain, skin rash, cold sores or ulcers, and eye pain.
List Out Your Current Medications
Your doctor will also want to know about any other medications you’re taking and other medical conditions, including if you’re pregnant or planning to become pregnant. They will also want to discuss your overall health maintenance, including scheduled vaccinations, as Crohn’s can put you at higher risk for infections like influenza or pneumonia.
Think About Your Goals
Finally, and most importantly, come prepared to discuss the goals you’d like to achieve. “Not the medical things, but what is it in their life that they’re not happy with or they’re not doing because of [Crohn’s],” said Dr. Hudesman. “I think that’s also important to bring up to the doctor.” Based on this information, your doctor may be able to tailor your treatment or provide advice to help you achieve these goals.
Questions to Ask
While Crohn’s remains a chronic condition, there are many medications and treatments available to help manage symptoms—from anti-inflammatory and immunosuppressant drugs, to immunomodulators, antibiotics, biologics, and surgery to remove the part of the infected intestine, expand narrowed parts of the intestine, or remove scar tissue.
Every patient is different—for every patient who prefers to remain on medical treatment, there’s another patient who would prefer to avoid the side effects of medication and opt for surgery. “Some of our biologics and medications work very well, but they do have significant side effects,” said Dr. Hudesman. “One option is to give your patient all these strong medications with side effects, or another option is…why don’t we take that out and they’re back to themselves. Now, you might need medication after that to prevent it from coming back…[but] the point is, surgery shouldn’t be looked at as a failure of therapy, and it should be in the discussion of what is the appropriate treatment for that patient.”
As you consider your treatment options, remember to keep the lines of communication open with your gastroenterologist. Begin to educate yourself about the disease through books or by visiting reputable websites, says Dr. Hudesman. And ask questions to make sure you understand your disease, the options available, and how it may impact your day-to-day life. The following is a list of questions that Dr. Hudesman suggests you ask your doctor:
- Why do I have Crohn’s disease?
- How severe is my disease? Where is it, and what type do I have?
- What is the long-term effect of having Crohn’s?
- What are my treatment options?
- What kind of medication is this and what are the side effects?
- How do I know if my treatment is working?
- How long will symptom relief last?
- What if I want children?
- Will my children inherit Crohn’s?
- Can I help manage Crohn’s through the right diet and exercise?
- What other lifestyle modifications can help?
- How do I know if my Crohn’s is getting worse?
- If my Crohn’s gets worse, is surgery my only option?
- How often should I see the doctor to help manage my symptoms?
- What resources or support groups are available?
Remember, the ultimate goal of treatment is to ensure that you have a high quality of life. Life with Crohn’s can be difficult, but it also can be full and rewarding. Developing open, honest communication with the right physician is your first step toward achieving this goal. “From the doctor’s perspective, adherence to the medication and compliance with medication is a very big issue, especially if [patients] are planning on getting pregnant, or they’re young and they don’t feel like taking all these pills,” said Dr. Hudesman. “Speaking with the doctor about those issues but also having goals—quality of life goals—are very important and, I think, [something] a lot of people overlook.”