A good working relationship between a patient and their healthcare providers is crucial in the management of ulcerative colitis (UC). There are many treatment decisions for patients and their doctors to navigate together. This is especially true because UC is a condition that goes through periods where it is less active (remission) and more active (flare-ups).
Talking about symptoms as well as how the disease affects being able to go to work or school, finances, and relationships, are all part of managing the disease with the help of healthcare providers. If you live with UC, you’ll likely have questions about the treatments available, including cost, potential side effects, and lifestyle considerations. Putting UC into remission is important to prevent complications, diminish symptoms, and improve quality of life.
With this guide, you'll discover topics that might be important for you to discuss, and how to best discuss them.
Prepare for Your Visit
Talk About Treatment
There are several different options for treating UC, including surgery. Which ones might be offered will depend on the severity of your disease and also any extra-intestinal complications. It will be important to ask questions of your doctor to find out why a particular treatment option is recommended. Being an educated, empowered patient is helpful in making decisions about your care.
Treatments can be divided into maintenance and rescue treatments. Maintenance treatments are given long-term and help prevent flare-ups. Rescue treatments are used in the short-term and may help get a flare-up under control. Depending on what is happening with inflammation, more than one treatment might be used at a time.
Novel Options
Treatments for UC are constantly evolving. There are several medications that are newly approved, or currently under investigation and going through clinical trials.
Some of these are new classes of drugs, meaning that they have a different way of treating UC than the drugs currently approved. Biosimilars and JAK inhibitors are two examples of that, as well as Zeposia (ozanimod), which acts to reduce the number of circulating lymphocytes in peripheral blood. It has previously been used to treat multiple sclerosis and clinical trials showed it to be effective in treating moderately to severely active UC.
Talk About Treatment Side Effects
The medications used to treat UC come in different forms and are given in various ways. With any drug, there's the potential for side effects. However, the risk of adverse effects is going to be different for each person. It's important to discuss your personal risk of side effects with your physician.
It's not known if any side effects are going to occur until you start taking or using a therapy. In some cases, there may be a way to deal with side effects, such as taking a drug at a different time a day, taking it with or without food, changing the dosage, or getting the drug in a different form (such as switching between topical and oral). People with UC shouldn't stop taking a drug without first talking to a healthcare provider.
Asking about the potential for any red flag side effects is also important. While it's unlikely to have serious side effects, it can be helpful to know if there's a particular sign or symptom, such as of an allergic reaction, to watch for. That way, you'll know if and when to call your doctor or to seek medical attention for a side effect.
Talk About Symptoms
The symptoms of UC can be challenging to talk about because many people find it embarrassing to bring up topics like diarrhea. However, being clear about the ways UC affects your body is important in helping choose the right treatment. Symptoms to talk about with healthcare providers include those that affect the large intestine but also other parts of the body, such as the joints, the skin, and the eyes.
One of the goals of management of UC, but not the only one, is to help lessen symptoms. Getting inflammation under control with treatments may help with symptoms and improve quality of life, as well as avoid complications.
Below are a few symptoms you might hesitate to bring up, but should.
Talk About Extra Intestinal Manifestations
UC is a condition that primarily affects the large intestine, but there are several different related conditions that can also occur. It's increasingly being understood that UC can affect the entire person.
For that reason, bringing up the problems that might not seem like they're related to the UC is important. In some cases it might be necessary to get referred to a specialist for treatment.
Sources:
1. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Ulcerative colitis. National Institutes of Health. Sept 2020. https://www.niddk.nih.gov/health-information/digestive-diseases/ulcerative-colitis/all-content.
2. Rubin DT, Ananthakrishnan AN, Siegel CA, Sauer BG, Long MD. ACG clinical guideline: Ulcerative colitis in adults. Am J Gastroenterol. 2019;114(3):384-413. doi:10.14309/ajg.0000000000000152.
3. Sandborn WJ, Ghosh S, Panes J, et al. Efficacy of upadacitinib in a randomized trial of patients with active ulcerative colitis [published correction appears in Gastroenterology]. 2020 Sep;159(3):1192]. Gastroenterology. 2020;158(8):2139-2149.e14. doi:10.1053/j.gastro.2020.02.030.
4. Vermeire S, Hébuterne X, Tilg H, et al. Induction and long-term follow-up with ABX464 for moderate-to-severe ulcerative colitis: Results of Phase IIa Trial [published online ahead of print, 2021 Mar 2]. Gastroenterology. 2021;S0016-5085(21)00459-5. doi:10.1053/j.gastro.2021.02.054.
5. William S, Brian F, Stephen H, et al. P031 Ozanimod in patients with moderate-to-severe ulcerative colitis: Long-term safety and efficacy from the Phase 2 TOUCHSTONE Study 4-year open-label extension Am J Gastroenterol. 2020;115(Suppl 1):S8. doi:10.14309/01.ajg.0000722920.48091.e7.
