The Importance of Reliable Information

Editor's note: Between the pain, symptoms, flares, and other daily challenges, life with inflammatory bowel disease (IBD) is hard. We want to shed light on these challenges during Crohn’s and Colitis Awareness Week (December 1-7, 2019). Crohn’s and colitis are often invisible illnesses, and therefore not always understood by others. We asked our advocates a series of questions to raise awareness about many of these invisible aspects of the condition. Here’s what they had to say!

The unpredictability of Crohn's

For me, unpredictability living with a chronic illness is the most difficult part of Crohn's disease. It really takes me by surprise, often. Most times, never in good ways.

The crippling exhaustion of a flare

Honestly, aside from the rectal pain and no one understanding how painful the disease is, my worst symptom is the crippling exhaustion of it. Think you know what exhausted is? Try prepping for surgery or colonoscopy while being ill and then being told you aren't clean enough to perform the scope. You think you get a few minutes of medically induced sleep, but you're forced to go through it all over again.

The exhaustion of moving your bowels so many times a day, the awful pain in your joints, the inability to find a restful night sleep because of pain and urgency is something that takes hours and hours of what could be decompressing and healing rest.

Myths and misconceptions

The biggest frustration for me is when people spread incorrect information, specifically MLM companies that take advantage of patients who may not be as educated as they “should” be. Patients who don’t know any better and don’t understand that essential oils will never help intestinal inflammation and will never provide mucosal healing like legitimate medications that have been available for more than 15-20 years with results like remission and mucosal healing.

It’s a crummy thing to learn that patients who were never given educational opportunities to learn about their disease are getting swindled by certain companies who claim to “cure” their disease. It’s a waste of money for those who are desperate for any kind of reprieve. It takes advantage of them and leaves them feeling awful when they realize that people take advantage of them in a weakened, desperate state.

Another misconception about IBD is the thought that we can control when/how ill we get as if we have full control of how fast our bodies heal. I can’t talk enough about this misconception. Once a virus takes hold of our immune system, we have little defense to fight things off that our spouses, family, and coworkers can. It may take them a day or two of rest and recovery, but often, we spend at least a full week trying to get rid of symptoms, a week trying to catch up on healing and a week or two to try and catch up on sleep. And it may not even be quality sleep.

A two-week illness can really throw a wrench into our plans - especially if we are already in a flare or have been in remission. Nothing can be scarier than knowing something good can be taken away with a virus that can deplete our immune system. And it’s scary! Anyone that we run into at the gym, at work or on the train may not think it’s a big deal to go to all these places when you’re sick, but it’s incredibly selfish to think that you won’t be passing along those germs to other people who are at risk of serious infections when we fall ill.

One piece of advice for someone who is newly diagnosed with Crohn’s or UC

Take your diagnosis in stride. First, you will probably over-Google, over research and suddenly feel that the whole “acceptance” thing is nowhere in sight. Find reliable, accurate resources that can answer your questions. Your doctor now has electronic messaging for a reason. He/she can provide some accurate resources that will help you on your journey. Write down questions in a notebook every time something comes to mind that you are wondering about. If you haven’t found those answers by your next follow-up with your specialist, bring that notebook with.