What Aggravates Us the Most About Crohn’s
Invisible, unpredictable, and often misunderstood. Crohn’s can be a tough path to walk. Just getting an official diagnosis can be remarkably challenging. Living with this condition, there’s so much to manage – from juggling daily routines on flare days to figuring out what foods get added to the do-not-eat-me list. Sometimes, it all feels overwhelming.
No doubt about it: there are lots of aggravating aspects of Crohn’s disease. We asked our inflammatory bowel disease community what aggravates them the most, and they had plenty to share.
– InflammatoryBowelDisease.net Community Member
How long did it take you to get a diagnosis after initial symptoms?
The elusive diagnosis
It’s easy to get a Crohn’s diagnosis, right? Uh, not always. Getting a Crohn’s diagnosis can be a baffling journey, full of wrong turns, detours, and the occasional dead-end. For many in the Crohn’s community, it can take seeing multiple healthcare professionals, going to numerous doctors’ visits, and enduring a slew of tests before receiving an official diagnosis.
With Crohn’s, almost nothing is linear. You may feel okay one day and then BAM! A flare comes out of nowhere. The ups and downs can be exhausting. One thing that may help? Keeping a journal of meals and activities to share with your doctor so you both can try to spot any connections.
"This disease is so hard to detect. Testing, suffering, testing, suffering – and still no clarity. It's an endless cycle."– InflammatoryBowelDisease.net Community Member
The difficulty of an invisible illness
“You look fine.” How many times have we heard that one? Sure, on the outside we may appear okay. But on the inside, we may be dealing with stomach pain, feelings of urgency, joint issues, and fatigue.
Work. Family. Friends. Crohn’s impacts so much of our lives. The people around us may try, but they don’t always understand what we’re going through. That can leave us feeling isolated.
With Crohn’s, there’s a lot to navigate. And this can add an extra layer of stress which, unfortunately, can worsen symptoms. How to deal with it? Learning ways to cope can be a big help.
Have family and friends become more or less understanding of your Crohn’s over time?
“Virtually no part of life is untouched by this illness.”– InflammatoryBowelDisease.net Community Member
Will symptoms go away? Get worse? Will the next flare turn into an extended hospital stay? Sometimes Crohn’s leaves us with more questions than answers.
Understandably, progression is a shared concern in the Crohn’s community. It can be especially frustrating when some symptoms inexplicably subside and new ones take their place. Having open conversations with your healthcare team about any changes you experience is important. Another thing that can help? Preparing for doctors’ appointments with a list of questions and concerns.
“My fear? That I'll have another flare-up and end up in the hospital again.”– InflammatoryBowelDisease.net Community Member
Living fully with Crohn’s
The path to receiving a diagnosis can definitely be frustrating. And living every day with Crohn’s can feel just as challenging. But you’re not alone. By connecting with communities like InflammatoryBowelDisease.net, you can find support that can help you get the care you need.
Have your symptoms changed since your diagnosis?