Vocalizing IBD

So I'm in the midst of my second real Crohn's flare. And I insist on talking about it. Not because I like complaining; to the contrary, my instinct is usually to huddle in a corner or crawl under a blanket and hope no one approaches. But after the shock and emotional upheaval of my first flare at the end of 2012, I decided to be as vocal as possible about this disease. There are three reasons for this:

1. A chronic illness is not something any person should have to endure in stoic silence. Often, those with a chronic illness (especially an "invisible" one) feel a responsibility to avoid burdening the people close to them. But that's just absurd. Being able to confide in people, utilize what assistance they offer, and take comfort from their closeness is, in some cases, the only medicine that can help.

2. The inflammatory bowel diseases are uniquely troublesome because of the very taboo nature of many of the symptoms. No one wants to hear about them. No one wants to talk about them. It can cause a profound, deep-rooted type of shame to lose control over your bodily functions.

Nothing says "close" like Twister.
Of course, this was back when I wasn't in too much pain to Twist.

If others don't understand just how much and in how many ways the life of someone with IBD is impacted, they can unwittingly amplify that shame. "Why can't you go out to eat with us? Shouldn't you be taking care of yourself better by [insert simplistic holistic/nutritional remedy here]? Are you just being dramatic when you double over in pain in the middle of the street, when you're moaning and crying in that bathroom stall? How can you do your work if you always have to run out of meetings halfway through? Can't you control that gas? Do you really have to pull over on the side of the road again?" If you're someone trying to deal with IBD, the very last thing you need is to feel ashamed and guilty about the symptoms. You need understanding and compassion.

I have a robust medicine cabinet. Hoping hard that something will kick in soon.

3. I want people to pay attention to their own bodies. An astounding number of people with IBD are misdiagnosed for many years or are only given any diagnosis once they land in the hospital for emergency surgery. But if more people are a) aware of the symptoms and b) not too ashamed to talk about them and seek help, more people can have a hope of getting earlier treatment and postponing some of the worst complications of these diseases.

And yet, in this post, I've been rather vague. So I'll get graphic here in the interest of IBD awareness.

You might experience:

• Stomach cramping, especially during or just after meals and during bowel movements, ranging from barely perceptible to agonizing
• Localized chronic pain at the rectum, anus, or specific parts of the abdomen
• Increased bowel movement frequency and changes in stool consistency and color
• Prolonged bouts of diarrhea
• Mucus in stool
• Bloody bowel movements, ranging from dots on toilet paper and streaks in the stool to crimson toilet water
• Nausea
• Gas and bloating
• Weight loss
• Loss of appetite
• Fatigue
• Joint pain
• Eye problems
• Changes in mood and personality

And a host of complications I won't go into. So please, be caring and kind. And please pay attention to your own digestive health.