ICYMI: IBD Awareness Week Thoughts from GWGs

Thank you for participating in our 2018 IBD Awareness Week Campaign! We hope some of the facts we provided give you a larger overview of IBD and some of the common questions and concerns people have. We also posed some questions to our community and were excited to see what y’all had to say! Here are some of our favorite responses:

Day 1: What are three words you would use to describe IBD to others?

1. “Terrifying. Painful. Exhausting.”
2. “Unpredictable, lonely, and powerful.”
3. “Pooping, Community, Exhausting.”
4. “Embarrassing, exhausting, motivating.”
5. “Tired, angry, and strong.”

Day 2: If you could tell someone one positive thing about their new diagnosis of IBD, what would it be?

1. “Don’t isolate yourself from the world because it’s embarrassing, it gets better! Communicate with those who don’t understand the anxiety. Just breathe!”
2. “Your life goals aren’t over. You can still achieve everything you want to but it might just take a little longer. That’s ok though, because there’s no rush!”
3. “Life is what you make it. You may have Crohn’s, but Crohn’s DOES NOT have you. Be your own advocate and find a doctor who hears you.”
4. “You will learn who you really are. You will learn just how strong and resilient you are, that you can still do anything you put your mind to, and that so many people care about and value you. And you will grow. IBD taught me to say goodbye to my perfectionism and learn to accept things I have no control over.”
5. “You learn who your true friends are, and who you can count on through your struggles!”

Day 3: Having IBD and/or an ostomy has taught me ____________.

1. “Self care is imperative.”
2. “That I am so much stronger than I realized.”
3. “I can handle so much, so well.”
4. “That it’s ok to feel bad sometimes and I don’t have to explain myself all the time.”
5. “…to love myself and get hung up on other’s opinions and judgements.”

Day 4: What do you do to make it through the rough days in dealing with IBD and/or an ostomy?

1. “We’re all so similar, in our comforts! I’ll do Epsom salt baths or foot soaks. Crying helps too. One thing I’ve learned is allowing the emotions to come out is easier on my body than holding it inside.”
2. “All the heat! My heated blanket and hot water bottle are my most used resources when symptoms get rough — even when it’s hot out!”
3. “I read a lot; and snuggle with my fur babies. They seem to know when I am sick.”
4. “Rest up with a cup of tea, my cat, and either read a good book or watch a real feel-good film! And some chocolate, too.”
5. “I like to knit and put on some Harry Potter. Not much you can do but relax.”

Day 5: What is the craziest assumption someone has made about you because of your IBD or ostomy?

1. “Many people thought I was bulimic or anorexic because I was so thin. They didn’t believe I had trouble absorbing because of Crohn’s Disease.”
2. “Someone told me I couldn’t have “gut troubles” (aka UC) because I’m not skinny enough.”
3. “I invited a friend to my house. She had to use bathroom and asked if she would catch Crohn’s from using my toilet. I said yes, and she had to hold it because she couldn’t find a polite way to leave to use the bathroom ????”
4. “They can never figure out how I can still go to the bathroom…and how many times have I heard, ‘the whole colon? I didn’t know they could take out the whole colon’”.
5. “That my post-op gas was caused by my ostomy ‘sucking air back into my intestines.’ This was a medical student. I asked her if she understood the basic concept of peristalsis ????”

Day 6: Tell us one negative thing you’ve experienced because of IBD, but follow it up with a positive!

1. “I pooped my pants at Walmart, but I got new panties!”
2. “Negative is that no one in me life truly understands what I go through on a daily basis. My pain and disease is always downplayed because to them it is not visible. My parents, brother, husband, coworkers, boss and friends, none of them really get it. It is hard to if you don’t experience it yourself. The positive is that is has made me VERY strong, I advocate loudly for myself and the best thing I ever started doing was just saying NO to things I didn’t or couldn’t do, with no explanation. It has also made me very compassionate towards others.”
3. “One negative thing I experienced was not knowing anyone else who had gone through what I was going through, or at least no one that would talk about it. Something positive that came of it was my motive to help others. Which is why I now work at the Cleveland Clinic on the colorectal surgical floor.”
4. “I have taken all available medications to no avail and had multiple surgeries ending in a permanent ileostomy. Now I’m well enough to live my life again- working, eating what I want (mostly), and even exercising!”
5. “I lost family and friends, but gained even more through the IBD community.”

Day 7: Despite having IBD, I have been able to ____________.

1. “Complete a half marathon, sprint triathlon, and Olympic triathlon, and have signed up for a half Ironman this summer!”
2. “Work a full time job, be a busy mom, and scrapbook our memories!”
3. “Become a lawyer!”
4. “Lead an award-winning team to win a journalism award!”
5. “Be a loving big sister and role model to two amazing young women!”

Thanks for celebrating with us! We hope that reading all the thoughts and stories from your GWG sisters this week has helped you to feel connected and inspired!