What 'Healthy' Means with IBD
Because each person is unique, living with Crohn’s disease or ulcerative colitis is a different experience for each patient. This means that sickness and recovery look different for each patient, too. But let’s take a look at how different people also define what “being healthy” means.
For many people with IBD, “healthy” means simply "not feeling sick." Many with Crohn's disease or ulcerative colitis have symptoms that are bothersome every day. This can range from mild to severe pain, a need for frequent bathroom trips, or draining fatigue. For these patients, any day that is without pain, urgency, or fatigue is a "healthy" day.
Many patients with IBD struggle with the foods they can eat and with keeping their weight steady. With Crohn's disease or ulcerative colitis, eating a regular diet and maintaining your weight is often considered “healthy.” In many cases, IBD patients are on a limited diet due to active disease or their body simply isn’t absorbing nutrients from their food, causing rapid weight loss.
“I used to base my definition of 'healthy' on how my body was doing physically, but I’ve learned to adjust that definition because living with chronic illness doesn’t make me 'healthy' in the usual sense. 'Healthy' to me has become a mindset, not a physical state.” -- Katherine, Crohn’s Patient
Sometimes medication patterns can be a symbol of health to patients. Many people with IBD consider the dosage and frequency of their medications as indications of their health. For these patients, lowering a dose or lengthening the time between infusions can mean that their disease is better controlled. In other patients, being able to come off medication completely is their sign of “health.”
"'Healthy' to me means being able to wake up with just enough energy to make it through a work day.” -- Alicia, Crohn’s Patient living with a J-pouch
Fatigue is a common problem in people with IBD. Sometimes fatigue can be severe and even limit Crohn's and ulcerative colitis patients to very few mundane activities in the day -- such as just getting out of bed or taking a shower.
For some with IBD, “healthy” is more complicated. Crohn's disease and ulcerative colitis affect the entire digestive tract, which means IBD can cause complications from the mouth to the anus -- and primarily in the small and large intestines. For some IBD patients, any day they don’t have blood in their stool or increased urgency to use the bathroom, or that their energy is at a normal level is considered a “healthy” day.
Due to low energy levels and weakness from malabsorption, many IBD patients are unable to participate in activities they love. However, there are some people with Crohn's or ulcerative colitis who are healthy enough to run marathons, climb mountains, and play sports. Being able to compete in their favorite arenas is a symbol of “health.” All the endorphins from these activities are an added boost for keeping a positive attitude!
Feeling “healthy” is different for each and every patient with Crohn's disease or ulcerative colitis -- and it’s also okay for people with IBD to adjust what their definition of "healthy" is over time. Living with inflammatory bowel disease has a shifting effect on your capabilities, so it’s natural to shift your expectations, too!