One for the recently diagnosed…

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If you have been recently diagnosed with any form of Inflammatory Bowel Disease (IBD), one of the many things you will tend to focus on is the need for more information about your condition.  After all, I think it’s fair to say that most of us were blissfully unaware of IBD before we were personally diagnosed, or someone we know was.  From my own experience, the first time I ever even heard of the term “Crohn’s Disease” was about three days after surgery (and still wired to the moon thanks to my lovely morphine drip) when I was politely informed by my Gastro-Doc that I had a fair chunk of my internal plumbing removed.  Admittedly, at the time it didn’t mean a whole lot to me, because a). I was wiped-out thanks to the surgery, and b). my sole focus was recovering/getting the f#@k out of hospital.  However, during the initial recovery process, my traitorous brain kept thinking up lots of questions like:

  • How did I get Crohn’s Disease in the first place?
  • Can I be cured of this disease?
  • How is having Crohn’s Disease going to affect my life?
  • What are the drugs you are giving me to manage this?
  • What are the side-effects of these drugs?
  • What are the follow-up protocols?

Now I will be the first to admit that when you are newly diagnosed, there is a tendency for the medical profession to go slightly nuts.  Let’s face it, a “definitive” diagnosis of Crohn’s Disease (Ulcerative Colitis, Crohn’s Colitis etc) can be a lengthy and arduous process – so I can’t blame the medical fraternity for doing a little happy dance and celebrating.  However, it is usually at this stage in proceedings that you get bludgeoned with a ton of paperwork relating to what Crohn’s Disease actually is, the symptoms you may experience, drug regimes that are available and various other information.  So, there you are, newly diagnosed and armed with a pile of booklets that could choke an elephant.  Overwhelmed?  Absolutely.  Confused?  Undoubtedly.  Scared?  Understandably.  Angry?  Most likely.  Generally speaking, having too much information can be bad enough at the best of times.  Having too much medical information (TMMI) – especially as it applies to your own health – can be downright terrifying.

However, the purpose of this particular blog post is to not only make you aware that TMMI can happen, but how slam the mental brakes on and not get sucked into the vicious circle of overwhelm, immobilisation and isolation.  So without further ado, here are just three basic suggestions based on what I have learned over the years and as they apply to the newly diagnosed:

  1. If the Doctor provides you with any literature during a consultation, think about waiting until the next day before reading it.  In my experience there can be enough to process from these initial consultations without overloading myself with yet more information, which will doubtless lead to even more questions.  Get a good nights sleep and come back to the literature the following day, with a clear head and a fresh perspective.
  2. Take notes.  Take lots of notes.  Whether you want to keep an IBD journal about your symptoms, thoughts, feelings, reactions to certain foods, medications or activity – or whether you just want to document specific aspects of your disease – these notes will become a source of information upon which you can base future treatment decisions.  It can also help you get to know your disease and pro-actively take ownership of it.  This information is relevant to you and you can generate as much or as little of it as you see fit.
  3. Join a community.  With the advent of social media/networking, you are no longer alone with your disease.  There are other people out there in the same (or similar) boat that may be able to help you.  In turn, a friendly/understanding word from you may just help them.  A lot of these communities have meetings, days out, fund raising events, presentations, social events and even local support groups.  If you can’t get out and about for any reason, support and first hand information are only a mouse-click away.  For example, check out the Crohns and Colitis Community on Google+.

So there you have it.  Just a few tips to get you started if you (or someone you know) has been recently diagnosed with Inflammatory Bowel Disease.  I could keep going but then I would be guilty of information overload (or TMMI) too :-)

Editor’s Note: Stephen Dempster is a monthly contributor to our blog. You can find Stephen on Google+ and on his blog Behind the Times. Stephen also is the creator of the Flipboard Magazine: A Little Behind The Times

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