You’re in your doctor’s office and you hear the news: You have Crohn's disease. It all seems like a blur to you. You can barely remember your name, let alone form a decent question to ask your doctor. That's understandable for a first-time diagnosis. At first, you probably just want to know what the disease is and what it means for your lifestyle. For your follow-up appointment, you will need to ask more focused questions on how to manage your disease.
Here are 10 questions that will help you focus in on your treatment:
1. Could any other disease be causing my symptoms?
Crohn's disease is related to other diseases of the bowel, such as ulcerative colitis and irritable bowel syndrome. You need to ask your doctor why they think you specifically have Crohn's disease, and if there is any chance it could be something else. Different diseases require different treatments, so it is important your doctor is thorough and runs many tests to rule everything else out.
2. What parts of my intestine are affected?
Crohn's disease can affect any part of your gastrointestinal tract, including:
- small intestine
You can expect different symptoms and side effects from lesions in different parts of your gastrointestinal tract, so it is helpful to know where exactly your disease is located. This can also determine what course of treatment you will respond to best. For instance, if your Crohn's is in your colon and not responding to medication, you may need colon surgery.
3. What are the side effects of the medications I am on?
You will be put on strong medications to fight Crohn's disease, and it is important to watch out for side effects when taking them. For instance, you will likely take a steroid, such as prednisone, and one of the side effects of it is weight gain. Other medications have different side effects of which you need to be aware. Some medications will even require you to get blood tests regularly to ensure you aren’t becoming anemic. Before you begin any new medication, make sure to talk to your doctor about possible side effects so you know what to watch out for.
4. What happens if I stop taking my medication?
Since some medications can cause undesirable side effects, some people choose to stop taking them. It is important to ask your doctor what the consequences are for discontinuing your medication. You will likely have to deal with a flare-up of Crohn's, but even worse, you might end up destroying part of your intestine and require surgery, if you stop taking your medication altogether. Missing medication happens from time to time, so be sure to ask your doctor how to handle missed doses as well.
5. What symptoms signal an emergency?
Crohn's disease can cause embarrassing symptoms, such as uncontrollable diarrhea and abdominal cramping, but it can also quickly morph into a life-threatening disease. Strictures, or narrowing of the intestine, can occur and cause a bowel obstruction. You will have sharp abdominal pain and no bowel movements at all. This is only one type of medical emergency possible from Crohn's. Have your doctor explain all other possible emergencies, and what you need to do if they happen.
6. What over-the-counter drugs can I take?
For constant diarrhea, you may be tempted to take loperamide (Imodium), but it is important to check with your doctor first to ensure it’s okay. Similarly, if you are feeling constipated, taking laxatives can sometimes be more harmful than helpful. Nonsteroidal anti-inflammatory drugs, such as ibuprofen, are generally not recommended for those with Crohn's disease because of side effects. It’s important to ask your doctor about any over-the-counter remedies that you should avoid during treatment.
7. What type of diet should I have?
Although there is no specific diet for people with Crohn's disease, it is important to have a healthy, balanced diet. Many people with Crohn's often experience tremendous weight loss due to constant diarrhea. They they need a diet that allows them to keep their weight up. If you are concerned about your diet, or if you are having trouble with your weight, ask your doctor if you can be referred to a nutritionist. This way, you will be sure to get all the nutrients you need.
8. What other lifestyle changes should I make?
Your lifestyle may change dramatically with a diagnosis of Crohn's disease, and certain habits you have can actually make it worse. For instance, smoking makes Crohn's flare up, and drinking alcohol with certain medications is not recommended. You will want to ask your doctor if you can still participate in sporting events, work-related activities, and any other strenuous activities. Usually, no restrictions are made on sexual intercourse, but you may want to speak to your doctor about how Crohn's affects this area of your life.
9. What future treatments will I need?
Most of the time, Crohn's is treatable with medication and lifestyle adjustments, but in some cases surgery is necessary to make the disease go into remission. Ask your doctor what your likelihood of surgery is and the type of surgery you might need. Some surgery removes diseased portions of your intestine, leaving only a scar. However, some surgery requires removing your entire colon, giving you a colostomy bag for the rest of your life. It is best to know ahead of time what your surgery options are.
10. When do I need to schedule a follow-up appointment?
Once you are done questioning your doctor, you need to schedule a follow-up appointment. Even if you are feeling fine and don’t have any flare-ups, you’ll still need to know how often you need to see your doctor. You also need to know what to do in case of a flare-up and when to make a doctor’s visit if you start having problems with your treatment. If your medications stop working or if you are not feeling right, ask your doctor when you should return to the office.
Crohn’s disease can be a painful and embarrassing condition, but you can manage it and its flare-ups by working with your doctor, and seeing them on a regular basis. You and your doctor are a team. Both of you need to be on the same page when it comes to your health and your condition.