Helpful Hints for the Newly Diagnosed - Part 2
Find your support system
Ask your GI about support groups in the area. Look online for support sources and groups that seem credible and legit. Visit university IBD Center websites and see what types of resources they offer. Find local chapters of the Crohn's & Colitis Foundation. Find someone to mentor you and, better yet, mentor someone else going through what you have to pay it forward. For me, I found Team Challenge through CCFA and developed lifelong connections and relationships. I've also kept in touch with very good friends who understand my disease and also my absence.
Establish a good rapport with your doctor
You will see each other a lot and you will have serious and sometimes uncomfortable conversations with him or her. Get to know them and build a relationship and a rapport.
Do your research out of the office and come prepared with no more than 5 questions. You only have a few minutes together and the more you know what to ask, the smoother the appointment will go. I've also known people like myself that put together goodie bags during the holidays for people like my infusion nurses. Appreciate the staff who may not seem to get recognition every day. That's important.
Develop your own "elevator speech"
How do you explain your diagnosis to others now that it's official? It's easier if you have something prepared, but not necessarily rehearsed. You will feel more comfortable telling others with time, but also know that there is no one that is forcing you to "come out of the bathroom." It took me nearly 5 years to actually accept that this problem that kept me in the hospital most of my later teens and into my 20's was clearly not going away. It was here to stay and I wanted others to understand why I wasn't present, why I was gone for extended periods of time, and truly, why I looked the way I did (prednisone). Everyone with IBD can come up with their own elevator speech and it doesn't need to be the same analogy that others use. Be concise, be factual and, after you've found a good resource that may help others understand, if you'd like, share that with them.
Embrace community awareness events if you're up to it
I know there are many patients who feel strongly about walks and runs benefitting those who may not be able to. But if you've got a great support system, friends, and family willing to walk with or for you, take advantage of that. Listen to others' stories as they speak of their hardships and realize that so many of us patients have been through very similar things.
Find your coping mechanism
I know that for many enjoy crocheting, running, snowshoeing, hiking, painting, writing, and traveling as part of leisure. Finding something that you can look forward to that might not take a whole lot of energy from you while you're sick will be of great help to you. There are a lot of great discussions on some discussion forums and private Facebook groups about what sorts of hobbies patients with IBD take part in. Don't be afraid to try new things!
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