Inflammatory bowel disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), causes chronic inflammation in a person’s digestive tract that can result in a range of different symptoms, such as frequent diarrhea, abdominal pain, rectal bleeding, and fatigue.1 These symptoms can often be persistent and painful. Dealing with these symptoms and others can sometimes be stressful and embarrassing for people with IBD, and can lead to them feeling isolated, overwhelmed, and even depressed. However, caregivers, friends, and loved ones of people living with IBD can provide medical, physical, and emotional support to help patients manage the disease and its symptoms.
What kinds of medical support can caregivers provide?
Many people with IBD require a great deal of medical care, various procedures, and different types of medications.1 It can sometimes be difficult or overwhelming to keep track of medications, for example, and taking medications regularly and on time is important for reducing symptoms and preventing flare ups. Caregivers can help their loved ones with IBD stay organized with their medications and medical care. They may also be able to help keep track of changes in symptoms the patient is having, which is information healthcare providers can use to adjust treatments and make sure that the patient is getting the best possible care. Caregivers may also help the person with IBD in applying injectable and topical medicines, such as rectal creams or foams, that can be difficult to do alone.
Caregivers can also help by speaking with doctors on a patient’s behalf. Some people with IBD may be too physically ill to make phone calls necessary for their care, or doing so may be too difficult emotionally. It is always comforting for a patient to know that a trusted caregiver is willing and able to speak for him or her if needed, whether it be on the phone, at an appointment, or during a hospitalization.
Dealing with medical insurance can also be overwhelming for most patients with any type of chronic condition, and people living with IBD are no exception. A caregiver can serve as an advocate for a patient in keeping insurance matters organized and ensuring that everything is dealt with on time. This can greatly impact a person's care, for example, if a medication, surgery, or procedure needs prior authorization.
What kinds of physical support can caregivers provide?
For a variety of reasons, people with IBD often feel tired or fatigued. This can make it difficult for some patients to take care of day-to-day activities on their own, such as cooking, laundry, cleaning, and shopping. Caregivers can help with these kinds of activities and lessen the amount of physical demands on a patient, especially during flare ups.1,2
Symptoms caused by IBD such as urgency and incontinence can be very challenging to deal with, especially outside of the home where bathrooms may not be quickly or easily accessible. Caregivers can help a person with IBD by helping to locate the nearest bathrooms in advance in public locations or at social events. Another suggestion is for caregivers to keep an “emergency kit” (moist wipes, a change of clothes, or other useful items) on hand during times when the person with IBD will be outside of the home. Being able to deal with emergency situations as quickly and discreetly as possible can help the person with IBD to feel more secure about going out.
What kinds of emotional support can caregivers provide?
Emotions such as stress and anxiety do not cause IBD, but dealing with the chronic symptoms of the disease on a day-to-day basis can be stressful for a person.1 Caregivers can be a supportive and encouraging outlet for people who are dealing with the disease to talk about how they are feeling openly and honestly. If a person with IBD is experiencing sadness or depression that is very intense or does not go away, caregivers can also help to recognize this and assist the patient in seeking care from a healthcare provider.
Are there ways for caregivers of people with IBD to connect with other caregivers?
Being a caregiver, especially a full-time one, for a person with a chronic illness can itself be stressful at times.2 It can be very difficult to watch a loved one in pain, and sometimes caregivers—like patients—can feel isolated and alone. Caregiver groups or communities are a good way to connect in person or online with other caregivers, to provide support and share experiences and advice. For example, the Crohn’s & Colitis Foundation of America provides an online community for parents and caregivers of people with IBD.