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 the 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 to know 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 he thinks that you specifically have Crohn's disease and if there is any chance that it could be something else. Different diseases require different treatment modalities, so it is important that your doctor is thorough and runs all tests to rule everything out.
2. What parts of my intestine are affected?
Crohn's disease can affect any part of the gastrointestinal tract, including the mouth, stomach, small intestine, and colon. You can expect different symptoms and side effects from lesions in different parts of the gastrointestinal tract, so it is helpful to know where exactly your disease lies. This can also determine what course of treatment you will respond best to. For instance, if your Crohn's is in your colon and it is not responding to medication, you may need colon surgery to remove it.
3. What are the side effects of the medications I am on?
You will be put on strong medications to fight your Crohn's disease, and it is important to know what side effects to watch out for when taking them. For instance, you will likely take a steroid, such as prednisone, and one of the side effects of that 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 that you are not becoming anemic. Before you begin any new medication, make sure to talk to your doctor about possible side effects so that you know what to watch out for.
4. What happens if I stop taking my medications?
Since medications can cause side effects, some people choose to stop taking them. It is important to ask your doctor what are consequences of discontinuing your medication. Of course, you will likely have to deal with a flare-up of your Crohn's disease, but even worse, you might end up destroying part of your intestine and require surgery. 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 symptoms that are embarrassing and difficult to deal with, such as uncontrollable diarrhea and abdominal cramping, but it can also morph quickly 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 to you all the possible emergencies and what you need to do in case of them.
6. What over the counter drugs can I take?
For constant diarrhea, the temptation to take loperamide (Imodium) is often quite strong. Most of the time, it is allowable, but it is important to check with your doctor to ensure it is okay. Similarly, if you are feeling constipated, sometimes taking laxatives can be more harmful than helpful. Non-steroidal anti-inflammatory drugs, such as ibuprofen, can also cause side effects to Crohn's suffers and are generally not recommended for use.
7. What type of diet should I eat?
Although there is no specific diet for people with Crohn's disease, it is important to eat a healthy, balanced diet. Many people with Crohn's suffer tremendous weight loss due to the constant diarrhea, and need to eat a diet that allows them to keep their weight up. Ask your doctor if you can be referred to a nutritionist if you are concerned about your diet or are having trouble with your weight. 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, but 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 also 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 your 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 that you would need. Some surgery just removes the diseased portion of the intestine, and you are left with a scar. However, some surgery requires the removal of the entire colon, and you would need 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 know when to return for a follow-up appointment. Even if you are feeling fine and not having 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 you just are not feeling right, ask your doctor when you should return to the office. You and your doctor are a team, and you need to be on the same page when it comes to scheduling follow-up appointments.