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You’ve Just Been Diagnosed – Now What?

I will never forget the day that I was diagnosed with inflammatory bowel disease (IBD). I knew something was wrong, that’s why I decided to see a gastroenterologist. When I awoke from my colonoscopy, the doctor told me that I had ulcerative colitis, with a potential case of Crohn’s. I remember looking at him and saying, “What is that?” I never had stomach issues before 2006, so now what? After listening to his explanation, I remember thinking… “What do I do now?

The diagnosis was scary

I first went to the internet to find information about Crohn’s and ulcerative colitis. I know I know; they say to stay away from the internet as it can be dangerous. But I did it on impulse because I was so scared. I wanted to read on my own what exactly IBD was. To be honest with you, it was more relaxing sitting in my own house reading the information. It wasn’t like I was in front of my doctor who I thought I was on a time limit as he might have had patients to see after me. I was able to digest the information slowly, writing down follow up questions that I was going to address when I returned for my consult.

Once I had my questions, I returned to my doctor’s office the next week. I asked my questions and we set up a plan. I can’t stress enough that you should not leave the doctor’s office without a plan in place. I know that the quick fix was steroids, and I was really feeling better when I took them. I remember that the doctor explained that it was a temporary fix and that I would have to go on some classic IBD oral pills to help with the Crohn’s.

Opening up about my diagnosis

I made sure to tell my family and friends. I did not want to keep it a secret. I know some people who have IBD keep it to themselves, but folks don’t be afraid to tell people. They need to know so that they can help you. They need to be aware of what is going on and why you might be acting a certain way. The only person who can explain the disease is you! I made sure to tell my family and friends, and I was so happy that I did. They to this day are so accepting and understanding.

It wouldn’t hurt to get a second opinion. I know I stressed this in one my earlier articles, but it really is a good thing. Don’t feel like your upsetting your doctor. Its always good to have a fresh set of eyes take a look at your case.

I needed support from people in the community

Even though I turned to my family and friends, none of them knew much about IBD. On top of that, nobody I knew had IBD. I needed to reach out to the people who had Crohn’s or colitis. I found the CCFA, which has been more than awesome. They have a wonderful network of patients and doctors who reached out to me with open arms. They welcomed me into their community. I was able to speak my mind and ask questions to patients who have been suffering all their lives. The only way to learn about the disease is to speak to people who have it. The CCFA has been my backbone for support. I recommend reaching out to them as soon as you are diagnosed.

Accepting a diagnosis of Crohn’s or colitis

Finally, accept what you have. I am not saying this is easy. I am not saying it will happen over night. But the sooner you feel comfortable with having IBD, the sooner you will be able to live a normal life. You can reach this stage. Remember each day is a new day. Each day presents its ups and downs. Just work through it. Remember you have support all around you. Talking, researching, and believing, will help you through the life of having IBD. Believe!

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

  • thedancingcrohnie moderator
    12 months ago

    I agree in being open about your IBD with family and close friends. Of course you don’t have to scream it out to everyone, but I definitely think when you are first diagnosed that your inner circle should definitely know.

    When I was first diagnosed, I was pretty tight lipped about it. Only certain family knew and it wasn’t until years after my diagnosis that I was more open. I wish I would have been more open from the beginning, because the support I have now is something I really needed from the start.

    Always dancing,
    Elizabeth (team member)

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