Coming to terms with a Crohn’s disease diagnosis can be tough. The lingering questions, anxiety, and feelings of isolation can be especially challenging. But remember: You have support and are not alone. The Crohn’s & Colitis Foundation estimates that as many as 780,000 people in the United States live with Crohn’s, with upward of 33,000 new cases diagnosed each year.
To help provide some clarity and support, we asked members of our Living with Crohn’s Disease community group what advice they would give to someone just diagnosed with Crohn’s. Now, it should be noted that what works for one person may not be the best option for another. But sometimes, a little bit of support from strangers can make a world of difference.
“From my experience, the beginning part of my Crohn’s journey was the worst, because that’s when I was the sickest and doctors didn’t know what was wrong. But the worst is over and it’s only uphill from there. Keep that in mind while you battle the rough part now; your quality of life can improve!” — Terrence J.
“I always carry a few things in my bag: Imodium, wet wipes, anti-anxiety meds, and a fresh pair of underwear. I rarely have to use any of them, but I like to know that I have that support just in case.” — Bradley S.
“I have my bad days, but stress is my worst trigger, so find ways to calm yourself when you’re stressed.” — Amanda Camacho
“Find silver linings. For instance, when somebody offers me something to eat or drink I don't like, instead of saying, ‘I don't like it,’ and getting the barrage of, ‘Just try it!’ comments, I can say it isn't Crohn's-friendly and they leave it be. It's the little things.” — Kim B.
“I’m going to be very candid with you: Living with an invisible, chronic illness like Crohn’s can be very challenging. You don’t quite know what’s going to happen to your body from one day to the next. However, if you frequently check in with a doctor you enjoy, follow a balanced diet and exercise regimen, and keep an open dialogue with your support system about how you’re feeling, your life with Crohn’s can be much more manageable … and enjoyable!” — Michael Kasian
“It’s not what holds us back that defines us. It’s whatever gives us hope to keep pushing through. I thrive by feeling thankful for the nine years of pain, embarrassment, depression, confusion, sick days, colonoscopies, doctor visits, medications, and the constant presence of the bathroom need. I am thankful for what this Crohnie life has made of me and what it has taught me, and what it has yet to teach me.” — Jean C.
“If you’ve just been diagnosed with Crohn’s and smoke cigarettes, put out that cigarette and find a way to never smoke another one. I’ve had Crohn’s for decades, but once I stopped smoking I’ve felt a hundred times better.” — Don M.
“I've had Crohn’s since I was 12. It's been a way of life. There are great days, hard days, and there are awful days. But it's my life. I smile through the good and smile through the bad. It's not always easy, but it's doable. And there is almost always something in the middle of your worst day that will bring you joy.” — Katherine G.
“It does get better after some time — mainly because you gain a good understanding of what you can and can't eat over time and really learn to listen to your body. Years ago I thought I wouldn't feel well enough to work full time. Well, now I work full time and also had a baby!” — Tiffany Swail
“Stay calm, find a doctor that really takes their time and discusses everything. Drink lots of water, get rest, and don't overcommit yourself. But remember to still do what makes you happy.” — Anonymous
“You CAN live with it. It’s a lifestyle adjustment. Find the right medicine, figure out what triggers your immune system, and find your stress reduction techniques. I have lived with it for 30 years and I’m living a good life. There are even football players and celebrities living with it!” — Cheryl L. Hunt
“This disease does not define you. It took me a long time to come to terms with my illness. I wondered why it was happening to me and when it would get better. You have to stay strong and know there is light at the end of the tunnel no matter how dark things may seem right now. I have also found being added to an ostomy and j-pouch group has helped a lot with my confidence. It’s good to have those who know what you’re going through to talk to!” — Sarah Davis
Michael Kasian is a features editor at Healthline who is focused on sharing the stories of others living with invisible illnesses, as he himself lives with Crohn’s.