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Advice for Someone Who’s Newly Diagnosed

Between the pain, symptoms, flares, and other daily challenges, life with inflammatory bowel disease (IBD) is hard. We want to shed light on these challenges during Crohn’s and Colitis Awareness Week (December 1-7, 2019). Crohn’s and colitis are often invisible illnesses, and therefore not always understood by others. We asked our advocates a series of questions to raise awareness about many of these invisible aspects of the condition. Here’s what they had to say!

When asked: “What’s one piece of advice for someone who is newly diagnosed with Crohn’s or UC?”, they shared that they encourage others to accept and come to terms with their diagnosis, find good resources, and that life is not over with a Crohn’s or UC diagnosis.

Accepting the diagnosis

Brooke talked about the way she reacted to the diagnosis of ulcerative colitis. She said, “If I had it to do all over again, I would change how I reacted to the diagnosis. I lived in denial for the first few months of the disease. And once I found treatment and started feeling better, I didn’t look any further into the condition. I allowed my fear to take over. Then when I was looking for more information, I went down rabbit holes that only increased my anxiety and aversion to accepting my disease.” Read what else Brooke had to share.

Find accurate sources of information

Kelly also talked about accepting the diagnosis, but she also shared the importance of accurate information. Here’s what she said: “Take your diagnosis in stride. First, you will probably over-Google, over research and suddenly feel that the whole “acceptance” thing is nowhere in sight. Find reliable, accurate resources that can answer your questions. Your doctor now has electronic messaging for a reason. He/she can provide some accurate resources that will help you on your journey. Write down questions in a notebook every time something comes to mind that you are wondering about. If you haven’t found those answers by your next follow-up with your specialist, bring that notebook with.” Read more from Kelly.

You can still live a fulfilling life with the condition

Although Crohn’s and UC can impact a person’s life significantly, it doesn’t always have to be in a negative way. Colin shared why he is grateful: “The one thing I can tell you about Crohn’s and UC is that they are not a death sentence. Yes, there are times where you don’t be sure you have the energy to keep going. Yes, it’s easy to think about the worst outcomes. But if you are working with your doctor and listen to your body, you can have the life you want. Or at least these diseases won’t be the reason you don’t.

I know this because I’m proof: I didn’t find my dream job, move across the country and meet the love of my life until I was diagnosed. UC made me into the person I am today, and in a weird way, I’m grateful for the disease.” Read more from Colin.

You are not alone

Natalie stressed that the first year is the hardest, but there are others out there to support. She said, “If I had to give one piece of advice to someone newly diagnosed with Crohn’s I would tell them that the first year will be the hardest in their patient journey. You can still accomplish your goals and dreams, you may just need to take some detours along the way. Be patient with yourself. Reach out to fellow patients on social media and through blogs and open yourself up to support. You are not alone in how you are feeling and brighter days are ahead.” Read what else she had to say.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Paul1701A
    7 days ago

    I was diagnosed with Crohn’s disease at age 19 immediately after emergency surgery during my second year of college. I’m 66 years old now and in the intervening years, after 7 bowel resections, an ileostomy nearly 30 years ago, numerous orthopaedic surgeries, and other surgeries too numerous to go into detail, I would say that anyone just being diagnosed needs a good support system, good information, a doctor who knows UC & Crohn’s and cares, a good sense of humour, and a strong faith in God, and a goal for living.
    When I started my journey with Crohn’s, there was no Internet, limited accessible information that was closely tied to medical professionals, and virtually no resources like this organization with which to educate oneself. My mother also had Crohn’s and that had an impact on my life as I watched her negotiate and experience the many ups and downs that come with this disease.
    Now, after reading about my experience with this disease, keep in mind that there are many treatments that are now available, both pharmacologically and surgically to aid any one who is diagnosed with Crohn’s that bring hope of better outcomes and a cure. Get educated, get a good support system around yourself, have strong faith, and a goal for living.

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