To the Newly Diagnosed: Don’t Believe Everything You Read

Don't Believe Everything You Read
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Finding out that you’ve got Crohn’s Disease or Ulcerative Colitis can be scary, especially if you’re new to the world of IBD, so it’s natural to scour the internet looking for solutions and treatments that fall outside of allopathic medicine. I was in that place once, but there are some things I wish I had known way sooner!

Not Every “Cure” Is a Cure

Yes, sadly you’ll find many “cures” online for Crohn’s or Ulcerative Colitis, but remember that anecdotes don’t equal fact and everyone’s definition of “cure” is different.  Is someone really cured of IBD if they have off-and-on flares twice a year? Does removing internal organs really cure anything? Are you really cured if you RELY on a certain supplement, therapy or drug for the rest of your life?

When evaluating possible “cures” (can we stop calling them that?), consider whether there have been any published, peer-reviewed studies to support any claims being made.  You may find that apart from a few anecdotes, these cures haven’t been tested and validated through controlled trials. I would also ask whether the person selling you this “cure” has treated anyone with it before – just because it’s helped someone with headaches doesn’t mean it’ll help with IBD.

Forums can sometimes be riddled with claims, often made by a new member who posts and amazing story about their illness and the “cure” they’ve used (often sold through them) and then they disappear with nothing other than a link to buy whatever it was that “cured” them. It’s OK to ignore those people, and just like those urgent emails you get from a random Nigerian Prince who’s looking to give you a small fortune if you can help facilitate a large bank transfer, view those posts as entertainment or SPAM.

Not Every Diet Is Going to Be Helpful

Raw food diets, 80/10/10, detox diet, Alkaline diet, water fasting, paleo diet, SCD, gluten-free, low-FODMAP, Atkins and ketogenic diets all claim to have magical powers in one form or another.  Of course, not all of these diets can back up their claims with scientific evidence, so before you jump on a fad diet, please speak with a registered dietitian first.

This can be especially important to remember when you’re either excluding a major food source like grains, legumes or fruit, but equally important when you’re including certain foods too. Does adding red meat and eggs to your diet sound like a good idea in spite of all the evidence against it?   Does going gluten-free really help when you don’t have celiac disease? While some people can present arguments that SOUND good, the real truth comes from the evidence.

My diet of mostly whole, plant-based food has strong evidence to support its role in a healthy lifestyle, but I choose to eat this way out of moral concern for animals and the environment, not (primarily) for health reasons. So in my case, I had to work around my own preferences to find foods that agreed with my flares. Fortunately, without any active Crohn’s present, I’m able to eat how I want, and my focus has been to eat in a way that supports long-term health and not simply to manage specific symptoms.

Beware of Unicorn Urine

Same as with dietary claims pay close attention to supplements, herbs, and potions that claim to be able to cure IBD.  I fell hard for this one and invested (more like wasted) thousands of dollars on supplements, tinctures, herbs, and remedies that did nothing more than cure me of a savings account.  Again, make sure that before you spend any money you’ve been given clinical evidence supporting the product you’re interested in. If you can’t find the evidence, move on.  And this really shouldn’t be a problem for any manufacturer that believes in their product; if they are unable (or unwilling) to share clinical research about their product, then they don’t deserve your money.

Also, keep and eye out for Unicorn Urine (a.k.a. snake oil) disguised as something else.  It really pisses me off when a company makes distorts facts by claiming that their product has been “clinically proven”, yet they offer studies that vaguely describe the product they’re selling. One example of this are probiotics:  While probiotics seem to be all the rage, there’s very little evidence of specific brands being of benefit, with the exception of VSL#3.  Any company that claims their probiotic will help you, yet they give you studies featuring VSL#3 is being misleading.

Another example of this can be found in supplements with isolated nutrients.  The logic goes like this: Food “XYZ” is healthy because it contains nutrient “ABC”, so if we synthesize nutrient “ABC” and turn it into a supplement, the supplement will be as healthy as food “XYZ”.  Do you follow?  Unfortunately, certain things that are healthy in food, aren’t so healthy as a supplement. This video by Dr. Michael Greger of NutritionFacts discusses the dangers of a few popular antioxidant supplements:

http://youtu.be/F2q01B3h42E

It’s Never One-Size-Fits All

Unfortunately, there is no single approach to treating IBD, and you may have to try different medications, food combinations, and therapies before you find something that works for you. I’m a firm believer that treating the whole person is the best way to manage disease; that is, treat the whole body and mind, not simply focus on specific symptoms.  You can’t become healthy by taking a drug and ignoring diet or exercise, and you can’t be truly healthy if you work out but eat junk food all day.  Sleep, stress, exercise, diet, attitude and finding a purpose in life are just as important than remembering to take your prescribed medication every morning.

If you don’t know where to begin, start with your weakest link.

People who aren’t getting enough sleep may decide to improve their quality of sleep through behavior modification (i.e not watching TV before bedtime), and for others, it might be to quit a coffee or smoking habit. Whatever your weakest link is, know that by working on it, you’ll strengthen other aspects of your life.

Final Thoughts

If you are newly diagnosed, I can understand your fears and motivation to get better, but you must be sensible in your approach to treatment or you may find your health going in the opposite direction that you want it to.

Ask questions, but don’t take EVERY answer as fact. Your doctor should be your primary source of information, and if you feel that they can’t answer specific questions (i.e. diet related), have them refer you to a specialist who can help (i.e. a Registered Dietitian).

QUESTION: How did you approach treatment when you were first diagnosed? Was there anything you wish you had known sooner?

Unicorn Image by vectorolie at FreeDigitalPhotos.net

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2 thoughts on “To the Newly Diagnosed: Don’t Believe Everything You Read

  1. Hi Eric, The surgeon who performed my ileostomy suggested probiotics. My reading suggested that probiotics do their best in the colon. Do you have any information on this?

    • Hey Laura,

      I had asked a doctor who was giving a lecture for Crohn’s and Colitis Canada whether there were any differences in our microflora when we don’t have colons. My thoughts were that if we don’t have a colon (where a majority of our bacteria thrive), then are we at a disadvantage.

      He wasn’t able to comment on whether we have an immune disadvantage (no studies), but he did say that researchers find the same gut bacteria that would normally populate the colon in the latter parts of our small intestine, which is interesting.

      I know that people without a colon who have a j-pouch will sometimes find great benefits using probiotics, especially to prevent/treat pouchitis.

      Unfortunately, not all probiotcs are created equally and the types of bacteria used, their count and if they are live will all factor into the quality of probiotics. If your doctor had a specific reason to suggest it, then I would trust them.

      I found that probiotics either did nothing for me, or gave me bad gas (before my ileostomy. I haven’t taken probiotics since my surgery, but by focusing on plant-based foods, I’m allowing the perfect substrate for good bacteria to thrive on. :)

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