Life with IBD
When someone you love has inflammatory bowel disease (IBD), you want to help. But the gap between wanting to help and knowing how is real. Most partners of people with Crohn's disease or ulcerative colitis say they feel unsure about what to do during a flare, uncertain about how involved to be in medical decisions, and worried about saying the wrong thing. A 2014 study published in Clinical and Experimental Gastroenterology found that 70% of IBD patients wanted their partner to be more involved in managing their disease, while 64% wished their partner received more medical information from their doctor. The desire for support is there on both sides. What is often missing is a practical understanding of what that support looks like day to day.
Flares Are Not Just Bad Stomach Days
If you have never experienced an IBD flare, it can be hard to grasp what your partner is going through. A flare is a period of active inflammation in the gastrointestinal tract, and it can bring severe abdominal pain, urgent and frequent bowel movements, bloody stool, extreme fatigue, nausea, and joint pain. Flares can last days or months, and their severity varies each time. Your partner may look fine from the outside while dealing with constant pain and exhaustion internally.
During a flare, your partner might cancel plans at the last minute, spend long stretches in the bathroom, or need to sleep for hours in the middle of the day. These are symptoms, not choices. One of the most meaningful things you can do is resist the urge to take canceled plans personally. According to the Crohn's & Colitis Foundation, offering flexibility with plans and being willing to adjust on short notice is one of the most effective forms of support a partner can provide.
Bathroom Anxiety Is a Constant Background Issue
Bowel urgency, the sudden and intense need to find a bathroom, affects the majority of people living with IBD. The Canadian Digestive Health Foundation reports that this urgency often triggers anticipatory anxiety that shapes how people with IBD approach everyday situations. Your partner may mentally map every bathroom in a restaurant before sitting down. They may avoid road trips, concerts, or hiking trails where bathroom access is limited. Nearly 70% of adults with moderately-to-severely active ulcerative colitis reported wearing protective pads at least once a month due to fear of accidents.
This is not something most people talk about openly, even with a partner. If your partner avoids certain activities or insists on aisle seats, driving separately, or staying close to home, now you understand why. Supporting a partner with IBD in these moments means being patient with the logistics and never making bathroom access feel like an inconvenience.
Know When to Encourage a Doctor Call, and When to Step Back
Living with someone with Crohn's or ulcerative colitis means learning to read the signals of a flare that needs medical attention versus one your partner can manage at home. Some warning signs that warrant calling their gastroenterologist include a noticeable change in symptom patterns, symptoms that persist longer than usual, or new symptoms that have not appeared before.
Certain situations call for emergency care:
A fever above 100.3 degrees Fahrenheit with chills
Severe abdominal pain that does not let up, especially with vomiting
Signs of dehydration, such as dark urine, dizziness, or inability to keep fluids down
Outside of these situations, your partner likely knows their body and their disease well. Offering unsolicited medical advice, recommending diets you read about online, or pressing them to try a supplement can feel dismissive of the work they have already done with their care team. A better approach is to ask, "Is there anything you need from me right now?" and to follow their lead.
Your Own Wellbeing Matters Too
Research published in BMC Health Services Research found that 39% of IBD caregivers experience significant burden, with 51% feeling they should be doing more for their partner. Caregivers with high burden levels reported 65% more absenteeism at work and 85% more presenteeism, where they were physically at work but unable to focus. A separate study in Inflammatory Bowel Diseases found that caregiver burden correlated directly with reduced quality of life and increased use of avoidance-based coping strategies.
Supporting a partner with IBD is a long-term commitment, not a sprint. If you are feeling drained, resentful, or emotionally flat, that is not a personal failure. It is a signal that you need support of your own. Talking to a therapist, joining a caregiver support group through the Crohn's & Colitis Foundation, or simply maintaining friendships and hobbies outside the relationship are all ways to sustain your capacity to show up for your partner over the long haul.
Small, Consistent Actions Build Trust
The most helpful things you can do as a partner are often quiet and ongoing. Learn enough about their specific diagnosis to understand their treatment plan. Offer to attend a gastroenterologist appointment, since only 42% of patients reported that their partner had accompanied them to a doctor visit despite most wanting more involvement. Keep easy-to-digest foods stocked during flares. Handle household tasks without being asked when you can see they are struggling.
Tracking symptoms together can also make a real difference. Many IBD patients and their doctors rely on detailed symptom logs to identify triggers and adjust treatment plans. Help your partner track their symptoms and identify triggers with Aidy, so you can both understand their condition better. When you can see a pattern forming, whether it is a food trigger, a stress response, or a medication timing issue, you move from feeling helpless to feeling like a teammate.
Supporting a partner with IBD is not about having all the answers. It is about showing up consistently, respecting their autonomy, and being willing to learn about a disease that will be part of your lives together.