To choose the right treatment for yourself, you need to have the right information. Trying to do your own research is admirable but also very challenging. There is just too much information out there. My goal is not to tell you what treatment path to choose but rather to give you the tools to discuss treatment options with your doctor. It is through an informed discussion that you will be able to make the right choices.
Points of discussion and Questions to pose
Treating a complex disease such as inflammatory bowel disease is challenging in that both the doctor and the patient have to act in unison. The doctor-patient relationship is very important and treatment options may change also as the doctor and the patient better understand each other's goals. Below is a list of questions to pose.
Do I have Crohn's disease or Ulcerative colitis?
It always surprises me when I see a patient for a second opinion and they are not sure what type of IBD they have. Crohn's disease and ulcerative colitis can differ in terms of complications, risks and treatment options. There are cases where we cannot differentiate between the two but this in uncommon. Crohn's disease has a higher risk of complications such as fistulas, abscesses, and strictures. Make sure you do not leave the office without knowing what you have.
What parts of my body are affected with my IBD?
Knowing where there is inflammation in your digestive tract will help tremendously in determining treatment options, in explaining symptoms and in predicting future risks.
Ulcerative colitis involving just the rectum and sigmoid colon (proctosigmoiditis) is handled differently than involvement of the whole colon (pancolitis). Proctosigmoiditis may only cause symptoms of rectal bleeding and urgency, while pancolitis will usually also cause pain, cramps and diarrhea. Proctosigmoiditis can be treated with local therapy such as suppositories or enemas while pancolitis needs oral medications as well. Pancolitis has a higher risk of colon cancer and would require earlier screening than proctosigmoiditis.
Crohn's disease primarily involves the distal small intestine and the large intestine but can also affect the proximal small intestine, the stomach and the esophagus. The type of symptoms a patient can experience will be affected by where there is disease involvement. Involvement of the large intestine can mimic ulcerative colitis in giving bloody diarrhea and cramps but involvement only of the small intestine may present with just pain or malabsorption of nutrients. Inflammation of the small intestine especially, if a large segment is involved, is more serious as the small intestine is the site of nutrient absorption and leads frequently to more aggressive treatment.
Is my disease mild, moderate or severe?
It is not hard to appreciate that mild disease is treated differently than severe disease but how we define severity of disease is challenging. This discussion is important as it helps to define present and future treatment.
Several factors need to be considered when discussing severity: severity of patient symptoms, severity of inflammation, previous or present complications, history of surgery for IBD, area of involvement and age.
Patient symptoms are based on level and frequency of pain, number of bowel movement, presence of blood and most importantly their quality of life. Inflammation severity is based on amount of intestine involved and the level of inflammation. A patient who has had intestinal fistulas, strictures, perianal disease, abdominal abscesses is felt to have more severe disease. Any patient who has had a resection because of IBD is at higher risk of further surgery and is considered to have more severe disease. Younger patients, especially children and teenagers are felt to be at higher risk for more complicated disease.
For example: a 16 year old female with Crohn's ileitis who only has intermittent mild abdominal pain but suffers from repeated abdominal abscesses is considered a severe case with high risks of complications needing more aggressive treatment.
I have other symptoms. Are they related to my IBD?
It is important to mention any other symptom you have as it can influence treatment decisions. There are a variety of extraintestinal manifestations of IBD, meaning diseases that are related to the IBD outside of the intestinal tract.
Joint: arthritis and ankylosing spondylitis.
Skin: erythema nodosum, pyoderma gangrenosum
Eye: uveitis, episcleritis
Mouth: aphthous ulcers
Liver: primary sclerosing cholangitis
What are the risks of treatment?
Knowing the important risks of a treatment strategy is crucial This means that you need to understand fully the risks of taking and NOT taking the treatment. An informed decision means that you understand both sides. When someone is sick, treatment decisions are often simpler because the patient wants to get well but some treatments work faster than others but at different side effect risks. You need to ask yourself and your doctor what option seems best for you. For example, If your symptoms are tolerable and there is no significant risk of waiting a few weeks for treatment to work, you may opt for a slower but less risky treatment.
When someone is in remission, the treatment decisions can be more complex and an honest discussion about the risks of treating or not treating becomes very important. In the earlier example of the 16 year old with recurrent abscesses, the patient feels well in between relapses but she needs to understand that she is at high risk for a severe infection and surgery if she is not on a maintenance treatment. The risk of the treatment is minor in comparison to the risks of not treating.
How long will I be on treatment?
The answer depends on the severity of the disease. A low risk patient with mild disease with infrequent mild relapses may only need intermittent treatment while a high risk patient would be better off with maintenance therapy. Patients who are on maintenance therapy need to appreciate that IBD is a chronic condition with risks of relapses of about 50% within 2 years of stopping maintenance therapy. Never stop your medication without having a discussion with your doctor.