Having to live in fear is something we all hope to protect our loved ones from. But for older adults suffering from IBD (Irritable Bowel Disease), it can quickly become the norm: everyday situations like meeting friends can cause stress and anxiety to the point where it feels easier to just avoid social events entirely. And, because this disease isn’t well-known, sufferers can find it particularly difficult to talk about with others who may be unfamiliar with IBD. Too often, this results in sufferers enduring long-term isolation and pain, rather than receiving the support they need.
A tough illness to face at any age, IBD is especially difficult for older adults because of the physical consequences. While most people with IBD are under 30 years old, these days more aging adults are being diagnosed with it—and forced to deal with challenging symptoms like weight loss, abdominal pain, anemia, diarrhea, and fatigue. Not to be confused with the much less serious IBS (Irritable Bowel Syndrome), IBD is more or less an umbrella term for chronic bowel diseases that include Crohn’s Disease, Ulcerative Colitis, and other less common types like Microscopic Colitis. And, it’s notoriously difficult to diagnose because the symptoms overlap with so many other illnesses and more minor health problems common in older adults.
Why Diagnosing IBD Is More Complicated for Aging Adults
While IBD is hard to diagnose in younger people, it’s even more so in older adults: it takes on average 6 years to diagnose IBD in people over 65 compared to 2 years in young adults under 30. This is often because the symptoms of IBD are usually more noticeable in younger people in contrast to a healthy, energetic body. For example, when a 17-year-old complains of severe stomach cramps, not feeling hungry, being tired all the time, and experiencing diarrhea, it’s easy to see that something is wrong.
But, when older adults experience these same symptoms, they aren’t necessarily as obvious to spot. Maybe your aging loved one has been dealing with fatigue for years, or perhaps they’ve had less of an appetite for a while now, so you don’t think to question it. It’s easy to confuse the general effects of aging on a human body with symptoms of IBD—digestive issues often accompany old age, as does ongoing fatigue. Even doctors are prone to guessing that symptoms like anemia and diarrhea are from something else (usually an illness that’s more prevalent in older adults) before considering that IBD may, in fact, be the cause.
How to Help Mitigate the Physical and Emotional Effects of IBD
Suffering from IBD can not only negatively impact your loved one’s physical health, but also their emotional well-being. Because the disease can be difficult to talk about, reduce the ability to socialize, and cause ongoing pain, it can feel impossible to navigate without sufficient support. Understanding these challenges, and taking simple steps to alleviate them, can help caregivers support their aging loved one in managing symptoms, preventing isolation, and getting back to a high-quality of life as soon as possible.
Get a Proper Diagnosis
The road to a proper diagnosis of IBD can be long and arduous, almost as painful as the disease itself. Countless tests, misdiagnoses, and incorrect medication can be draining and challenging for your aging loved one to endure. Having ongoing support from family members and caregivers can help them get through this trying time.
- Pay attention to symptoms: Keep track of the symptoms your loved one is experiencing, and try to rule out other possible causes.
- Talk openly to their doctor: Encourage your loved one to be completely honest with doctors about their symptoms, and give as much information as you can. If another diagnosis is made, and your loved one’s condition continues to deteriorate, request another assessment.
- Start taking medication: Once you get an IBD diagnosis, your loved one can begin taking medication that will help their colon and digestive system to heal.
Talk to Your Loved One About the Disease
IBD is often misunderstood, and associated with sensitive issues like diarrhea, so older adults may feel embarrassed to talk about their symptoms with you.
- Encourage them to share: Ask them specific questions about how they’re feeling, both emotionally and physically. Frame difficult questions gently if they seem shy or reticent to disclose information.
- Explain the disease: Make sure your loved one understands why they might be experiencing their symptoms, how the disease affects the interior of their colon, and remind them that it will improve with treatment.
- Offer emotional support: Be an empathetic ear for your loved one to share their thoughts with, and a compassionate shoulder to lean on. Reassure them you’re there to help.
Work to Prevent Isolation and Depression
IBD may cause your loved one to avoid social situations out of fear that symptoms like diarrhea will cause embarrassment, which can lead to isolation, anxiety, and depression.
- Join a support group: Connecting with other people who suffer from IBD can offer your aging loved one validation and reassurance that they’re not alone.
- Plan for social visits: If friends and family are visiting, ensure that your loved one has fast access to the bathroom, and feels free to cut the visit short if they don’t feel well.
- Develop a shorthand: When you’re out together in public, have a shorthand or signal to communicate with your loved one when they need help, if they’ve had an accident, or simply feel uncomfortable. As soon as they signal, respond immediately by helping them to the bathroom, or checking in privately to find out what they need.
IBD Resources for Older Adults Living in the Bay Area
Fortunately, for older adults living in and around California’s Bay Area, there are many wonderful resources for dealing with IBD, including top-notch specialists, support groups, and clinics. If your loved one is in this area, explore these options for more information and support:
- UCSF Colitis and Crohn’s Disease Center: Provides care for IBD patients, assessments, new drug trials, and access to specialists.
Address: 1701 Divisadero St., Suite 120, San Francisco, CA 94115
Phone: 415-353-7921
Email: gi@ucsf.edu
- Crohn’s and Colitis Northern California Chapter: Offers compassionate support groups for those dealing with IBD, and raises awareness through events like charity walks and conferences.
Address: 5 3rd Street, Suite 815, San Francisco, California, 94103
Phone: 415-356-2232
Email: ncal@ccfa.org
- Stanford Healthcare Inflammatory Bowel Disease (IBD) Program: Provides care, symptom relief, and treatment for IBD patients by a team of specialists.
Address: 900 Blake Wilbur Drive, Digestive Health Center, Palo Alto, CA 94304
Phone: 650-736-5555
Email: Contact form
Living with IBD as an older adult is challenging to say the least, but compassionate support from loved ones—and proper treatment—can make it much easier. As a caregiver, you can help your aging loved one by accompanying them to doctor’s appointments, offering at-home care, and having empathetic conversations with them on a regular basis. Knowledge is power when it comes to diseases like this: by developing a strong understanding of the disease itself, you can help your loved one mitigate symptoms and prevent emotional issues from becoming additional serious problems.
Managing this type of condition is far more achievable when your loved one is surrounded by a supportive network of people with whom they feel safe to share their feelings. Opening up about symptoms, and having their pain validated, can allow them to get a correct diagnosis and access long-term treatment. An IBD diagnosis doesn’t mean your loved one will never live a normal life again, but it does require that caregivers and family members adapt to the new situation, and offer ongoing reassurance that their loved one is safe and cared for.
If you’re unsure how to offer the best support for your aging loved one, Institute on Aging provides a range of services, programs, and online resources. Get in touch today to learn more.
