Thursday, November 27, 2008

Crohn's Tips - Part 3: The Intellectual Side of Crohn's

Crohn's Tips Part 1: Introduction
Part 2: Physical
»Part 3: Intellectual
Part 4: Emotional
Part 5: Spiritual
Appendix: Crohn's Tips: Food

Taking a smart approach to your chronic illness can have real benefits for you, both mentally and physically. The bad news is that you can't cure yourself, but the good news is that you can turn having Crohn's from a scary confusing situation, to a manageable bump in the road. You can go from being a victim, to living a full, happy life. This section contains tips for things you can do from an intellectual perspective, including learning, organizing and acceptance.
  • Learn the facts: the very first thing you should do is eliminate any confusion or general questions you might have, and take away some of the ominous mystery of your diagnosis by learning everything you can from reputable sources. Go to your local library or bookstore and pick up some factual books about Crohn's Disease such as Crohn's and Colitis: Understanding the Facts About IBD by Hillary Steinhart. Knowing what it is, the treatment options, and what is ahead of you can help you face and accept your situation. It's probably not as scary as you thought, and will keep your imagination from inflating your worries.
  • Avoid sketchy information: There are a lot of websites out there that claim to know how to cure you. Special diets, miracle vitamins and other unproven 'solutions'; but there is currently no real cure. Make sure you know the difference between reliable websites and books, and those which are pushing an agenda or product. Always get your information from multiple sources to be sure about it, and then check with your doctor before taking any action, trying any diet, or taking any vitamins or medication. Also be aware that spending too much time on forums and blogs can leave you with the impression that there is no light at the end of the tunnel. Remember: people who feel awful may want to post on forums, but people who feel great might be too busy to post their success stories; so online, Crohn's Disease may seem worse than it is.
  • Keep a personal medical binder: In this binder keep all the information sheets from the pharmacy about your medications, a list of your doctors and their contact information. Your current medications and vitamins. Information sheets about hospital stays and surgeries. Write down a list of questions for your next doctor visit. When you get home from a doctor visit, record everything you remember that he or she told you (or bring your binder to the appointment and jot down notes while you're there). Keep a symptom journal and record what you eat, how you feel, your pain level, temperature, washroom trips and irregular medications you had to take. This may seem silly, but having it all together in one binder or folder will be a lifesaver when you're trying to remember whether some feeling is a symptom of one of your medications and whether it's serious or not. It also helps to recall the advice of your doctors long after you would have forgotten, or to watch for a pattern of symptoms or worsening pain. Once I was brought to the hospital in an ambulance and had the sense to bring the binder with me. It helped to speed up my admission to the ER because the admitting nurse could fill out my paperwork quickly from my binder notes, rather than ask me questions through the morphine haze.
  • Keep your medical information in your wallet: Keep a folded sheet of paper in a visible spot in your wallet that says Medical Alert on the outside. Inside record your emergency contacts, doctors, medications and allergies. Also record your diagnosis of Crohn's Disease and any recent surgeries. Consider purchasing a Medical Alert bracelet or necklace. Also give this information to a loved one in case it's needed.
  • Keep your medical receipts: You may be able to claim medical expenses on your income taxes.
  • Watch your state of mind: Keep an eye on your thoughts. Are you making problems seem bigger than they are, or are you ignoring serious issues? Are you following the advice of your doctor? Are you sadder than usual or possibly depressed? Are you avoiding the situation or refusing to ask for help?
  • Remember to be thankful: Every single person (that includes you!) has something to be thankful for. In the thick of a Crohn's flare up it can be hard to remember that there is more to life than pain, washrooms and food you can't eat. Stop for a moment to make a list of all the good things and people in your life. Compliment yourself. Try not to let your Crohn's Disease taint the rest of your life too.
  • Accept yourself: You have Crohn's Disease. That is a part of you, but it's not all there is to you. Accept what you can't change and gather the determination to make the best of the precious life you have. Mental attitude can mean the difference between misery and happiness. Look in the mirror and vow to live life as fully as you are able, and to find joy where you can. When Crohn's gets in your way, take things one day at a time and you'll get through it.
  • Help find a cure: Check out the CCFA ( or CCFC ( websites to learn how you can get involved with helping to fund research, raise awareness, or support others in your community. Every little bit helps.
  • Have fun: Make sure you aren't thinking about your disease all the time. It can gnaw at the back of your mind constantly. Don't let yourself get caught up in this pattern. Take a break and relax. Talk to friends. Do something you enjoy. Watch a movie. If your mind is constantly churning, try techniques like meditation or talk therapy to clear your thoughts and refocus yourself.
Having a chronic disease can be scary. But being smart, organized and accepting can clear the confusion and reduce or eliminate your fear.

If you have intellectual side tips to add, feel free to post your comments or feedback here. Stay tuned for the next part in this series.

Creative Commons License.
You may only copy, share and distribute this work under these terms.

1 comment:

  1. All great advice! I have a medical binder, too, and it has saved me a lot of time and energy in the long run. Like you said, it is so nice to hand it to someone who needs all your info.

    Before I go to the doctor or the hospital I always print up several loose sheets that have my name and a list of meds that I can give to nurses or whomever needs them. Someone asked me once if I was a med student. No, just a full-time patient!

    There is not a whole lot we can control about Crohn's, but having an organized med binder is one of them.