As a caregiver, you play a vital role in their long-term well-being and must be supportive, flexible, honest, and proactive. The challenges you face over the long haul will be complex and varied. Here’s what you can do to help your loved one better manage the disease.
1. Expect that UC may change, and be ready.
The symptoms of UC can vary widely from person to person and can change over time in one individual. Some people have mild symptoms or long periods of remission, when their symptoms don’t restrict their day-to-day activities, according to the Crohn’s and Colitis Foundation. During these times, you may not need to provide much support as a caregiver. Other times, or in people with more severe disease, the symptoms can become distressing. Your loved one may experience:
Frequent diarrheaStomach painRectal bleedingLoss of appetiteFatigueWeight loss
These symptoms can flare up seemingly out of nowhere — and disappear just as quickly. When they occur frequently, your loved one may feel embarrassed, guilty, and even depressed. You can help by being prepared to extend more emotional support.
3. Be a good listener.
Given that UC can be not only painful but also unpredictable and disruptive, it’s not surprising that stress can be a major part of living with the disease. While stress and anxiety have not been shown to cause UC or Crohn’s disease, rates of depression are higher among people with IBD compared with people with other diseases and the general population, according to the Crohn’s and Colitis Foundation. “While stress does not usually cause active inflammation, it can make symptoms worse,” says Dr. Hanauer. He notes that when we get stressed, we have more frequent bowel movements and cramping. “It’s part of our vernacular,” says Hanauer. “Performers go onstage, and they get ‘butterflies in their stomach.’ Stress does absolutely affect our gut.” To help alleviate stress, you can simply let your loved one know that you are there to listen anytime they want to talk about their feelings. People react in varying ways to a chronic illness, but there are some issues that commonly crop up in people with UC. For instance, people who have this disease may worry about symptoms such as bowel incontinence or pain during sex or have poor body image. All of this can take a toll on a person’s sex life, according to the Crohn’s and Colitis Foundation. Some people may feel guilty or blame themselves for their condition and wonder if they did something to cause it. Remind them that it’s not their fault, they didn’t do anything wrong, and they didn’t bring it upon themselves, emphasizes Hanauer. You can support your loved one emotionally by allowing them to talk openly about these issues and encouraging them to find a good mental health professional — particularly someone who is familiar with the challenges faced by someone with IBD — who might be able to help.
4. Look for ways to ward off a flare.
Your loved one’s symptoms may be in remission now, but you can help ward off a future flare by being on the lookout for potential triggers. For example, help them avoid certain foods, such as:
Nuts and seeds, which can irritate the GI tractCarbonated drinks, which can increase gasPopcorn, since kernels can be hard on the digestive tractDairy, if they’re lactose intolerant
Encourage your loved one to keep a diary of what they eat and drink, noting the foods that are especially problematic. Don’t want to keep a physical record? There’s an app available.
5. Do a little research before leaving home.
When someone has UC, the last thing you want to do is wing it. To help ease your loved one’s concerns about going out — whether it’s a short trip to the grocery store or an outing to a park — scout out the locations of bathrooms at your destination. “Make sure they have a clear path to the bathroom,” says Hanauer. If you’re going to a restaurant, you can also scan the menu ahead of time to make sure there will be dishes that are good choices for someone with UC.
6. Learn to spot non-GI symptoms of UC.
In some people, UC symptoms can occur outside the GI tract. These are called extraintestinal symptoms and can include joint pain and swelling — which can even cause changes in your loved one’s mobility — skin lesions, and rashes. As a caregiver, you are in a unique position to support your loved one by keeping tabs on their symptoms and then bringing these symptoms to their physician’s attention.
7. Know that your loved one may be at risk for colon cancer.
People with UC are more than twice as likely to develop colon cancer compared with the general population, according to a study published in February-April 2018 in Best Practice and Research: Clinical Gastroenterology. It’s thought that inflammation in the colon can cause changes to the cells in the intestinal lining, which may lead to cancer, according to the Crohn’s and Colitis Foundation. As a caregiver, make sure your loved one follows their doctor’s instructions regarding colon cancer screening. The American Cancer Society recommends that people with IBD get a colonoscopy every one to two years following diagnosis.
8. Don’t forget to take care of yourself.
Being a UC caregiver takes patience, understanding, and knowledge of the physical and emotional challenges faced by your loved one. But an important part of being a caregiver is to take care of yourself too. Consider finding a support group for caregivers, and suggest that your loved one find a group for people with UC. The Crohn’s and Colitis Foundation can help you find groups in your area. Being a caregiver is no easy feat, but with the right knowledge and attitude, you can take pride in being a source of comfort, knowledge, and strength for someone you love.
