Living with inflammatory bowel disease can be unpredictable, but you shouldn’t let that stop you from enjoying the good moments while they’re here.
One of the toughest aspects of living with inflammatory bowel disease (IBD) is the impact it can have on our mental health.
Research shows that 40 percent of people with IBD have higher than average anxiety levels, and one element of this is a very real fear of an imminent flare-up.
For some folks, remission is easily achieved. For others, it can take a complicated mix of medication and lifestyle changes.
Either way, between 25 and 50 percent of people with IBD experience a flare-up every year, meaning that remission isn’t necessarily a permanent concept.
If you’re always waiting for the other shoe to drop, it can be pretty hard to live in the moment. Unfortunately, that can mean not being able to fully enjoy those times when you feel happiest and healthiest.
If you’re in remission, savor it. Not sure how? Here are five tips for living in the moment and not being controlled by the fear of a flare-up.
I have Crohn’s disease, and it took many years to realize that much of my condition can’t be controlled.
I know I’m not alone. Many of us with IBD walk on proverbial eggshells when in remission and are often terrified of doing something wrong.
But IBD is a complicated condition that can often flare up for no real reason at all. Accept that the nature of your autoimmune disease is not determined by the choices you make during remission — and you are certainly not to blame.
Adopting and repeating a simple mantra each morning can help with this.
“Today my body is happy and healthy.”
“I can’t control my condition.”
“My body is trying its best, and I will do my best to listen to my body.”
Write these down in a journal or keep them visible on a sticky note for when you need a reminder.
If I could give any fellow person living with IBD a single piece of advice it would be to take things one day at a time.
Things can change so quickly. A bad day can turn into an awful week, but equally, it can also turn into a much better one once your medication kicks in.
Take remission one day at a time, too, rather than expecting it to be permanent or constantly fretting about the future.
If you’re reading this and feeling well today, then enjoy it for what it is. Eat that cake, take that walk, or book that trip!
Life in remission can feel very different than when flaring, so now might be the time to try something new. For example, just because you can’t eat certain foods when flaring doesn’t mean you can’t try them now that you’re doing well.
Similarly, you might add more activities to your daily routine now that you’re no longer struggling with fatigue.
Use a similar approach when planning, too. It can feel daunting to plan too far ahead because of those “what if” scenarios — but fear of a flare-up shouldn’t stop you living your life.
While planning a trip for next year might seem scary in case you’re no longer in remission, taking practical steps — like paying extra for cancellation insurance or opting for refundable tickets — can help you feel a little more confident.
It’s the chicken or egg situation: Does a flare-up cause us to stress out, or could stress actually contribute to a flare in the first place?
Either way, constant worry about remission ending isn’t productive or good for your well-being, whether it contributes to your IBD or not.
While we don’t know the precise causes of IBD, a 2019 study did show that stress can be a potential trigger relating to flare-ups, so it’s important to focus on stress-busting activities where possible.
If you feel that your fear of remission is affecting your mental health, you may benefit from therapy, such as cognitive behavioral therapy, to help manage the anxiety or stress around your condition.
One of the hardest things is knowing whether we’re actually experiencing a flare-up. It’s important to remember that a stomach pang, diarrhea, or feeling under the weather doesn’t automatically spell IBD.
Some people with IBD still struggle with symptoms when in remission, and a significant number of people with IBD also have the less serious irritable bowel syndrome (IBS). The symptoms of IBD and IBS can overlap.
Remember, even those with cast-iron stomachs can still suffer from overindulgence, food poisoning, or a nasty sickness bug that is doing the rounds.
Don’t assume a flare-up is imminent from one bad day, but keep talking with your doctor if things don’t quickly ease.
Living in the moment shouldn’t mean ignoring the reality of your lifelong condition.
Medication might feel less important when you’re feeling well, but skipping doses is a common risk factor for flare-ups, research shows.
In one 2014 study, a quarter of people admitted to missing doses at least two to four times per month, and those who didn’t take their medication as prescribed were three times more likely to experience a flare-up.
Keep talking with your doctors regularly, and take your medication as instructed to give yourself the best possible chance of staying well.
If you’re reading this and are in remission, then the most important advice is to try to enjoy it.
Living with IBD is often unpredictable, so when you are blessed with those calm, pain-free months — and hopefully years — do your very best to live for right now, rather than trying to predict what’s around the corner.
Article originally appeared on August 14, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on April 14, 2021.
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