Tuesday, October 7, 2008

Silent Sufferers

I recently started reading a book: Coping With Crohn's by Sonia Glover. Her story is a tough one, and her years of suffering without a diagnosis made me think of the people around me. A shocking percent of my female friends and family members are suffering with some kind of undiagnosed 'stomach problems'. Of my four close girl friends, one besides me also has Crohn's, and two others have stomach issues, one of which has MAJOR problems. One of my male friends has a sister with issues, and my own sister in law is suffering with IBS-like symptoms of her own. It's heart breaking to see the people I care about most suffering in silence.

Most of them have been to a doctor multiple times. In some cases the test showed up clean, in other cases they refused to go for the more unpleasant tests. Reminds me of myself a few years ago. While I'm feeling fairly good, and getting the treatments I need, my friends are suffering on and off without answers. So, I've put together a list of tips and things to tell your doctor about to help get a diagnosis.

• Go for all the tests your doctor needs. They aren't so bad- even the dreaded colonoscopy is a big nothing- I was knocked out the whole time. This is so important- these tests are the only way to get a firm diagnosis.

• Keep a symptom journal. Record everything you eat, your fatigue level, stress level, pain level, bowel movements and a description of them. In all the gross detail you can manage.

• Tell your doctor about how long you've been experiencing these symptoms -to rule out short term causes like the flu or food poisoning.

• Describe any other problems you may be having even if you think they are unrelated. Examples are: skin rashes, joint pain, muscle pain, headaches, dizziness, fatigue, trouble concentrating, etc.

• Describe your pain on a level of 1 to 10. One being barely noticeable, and 10 being the worst pain you've ever experienced in your life.

• Tell the doctor about all medications and vitamins or natural remedies you are taking.

• Insist that your doctor be proactive in sending you for tests and trying treatments. Don't let the doctor send you home feeling like you are just doing this to yourself with stress, or that it's a natural part of life, or that there is no answer. Get a second or third opinion if necessary.

Suffering in silence is no way to live. Our medical system, especially in Canada is open to everyone and despite occasional wait times, the quality of care is excellent. Even if you are diagnosed with a disease like Crohn's that has no cure, there are still a large number of therapies and treatments that can greatly improve your quality of life. Don't be afraid to stand up and demand the help you deserve.


  1. I love this post - thanks for sharing! It's important that you get tested and not give up if you get an inconclusive result. My Crohn's wasn't diagnosed until I had surgery - 3 years AFTER my initial symptoms. My bad bowel was covered by my misplaced colon so it didn't show up on tests of any kind. It's important to not give up. You know your body better than anyone (including doctors) and you know if something is wrong.

  2. I just happened to see your blog and I gotta say, I love the attitude. You remind me of me when I was first diagnosed 2 yrs ago. There was no way this nasty disease was going to rule me. I also agree with a previous post about how healthier people post less and the sick more. Very true of myself. The less time I spend in the loo with my wireless laptop, the less I post. And that's a good thing.
    Good comments on taking your health into your own hands. I would also suggest taking it further where your question all the doctors tell you as well. Keep in mind doctors are paid to perform surgeries and hand out drugs. That is their job. If you have not tried it yet, I would suggest reading Breaking the Vicious Cycle the Specific Carbohydrate Diet. My family doctor pointed me to this diet after my specialist refused to discuss a food connection. I have followed this diet strictly for 1 yr now. I am med free, healthy and almost symptom free. Not every day can be a good day. But I am no longer dashing through rush hour traffic trying to reach a Starbucks before... well you know.
    I wish you luck and hope you kick some serious Crohn's butt!