During our 2020 IBD Awareness Week Campaign, we hope you learned from some of the facts we provided, had an opportunity to connect with other GWGs over Zoom, and checked out our new project and information hub, A Gutsy Feeling. We also spent the week posing questions to our GWG community about IBD and loved hearing from you all. Here are some of our favorite responses.
Day One What are three words you would use to describe IBD to others?
- Twisted inflamed intestines
- Life taking embarrassment
- Daily poop management
- Can’t eat that
- Pain, isolation, exhaustion
Day Two If you could tell someone one positive thing about their new diagnosis of IBD, what would it be?
- Strength. I don’t think I would have the strength I have had if I had never gone through what I have. I am a firm believer that what doesn’t kill you makes you stronger. It’s not easy going through it, but if you survive, you’re better for it.
- Definitely the people I’ve met through Girls with Guts and other groups. So many really neat people. Many who will have my back in a heartbeat. It’s also inspiring to meet all these people who have IBD but are pushing through to achieve some really cool things. It helps me push for better health because I know it’s possible.
- 40 years…medical knowledge, body awareness, empathy & support of friends & family, strength, perseverance, ability to help others, empathy for others, gratitude, a love of life, and each day that others can’t grasp.
- Awareness of a whole population of people suffering and understanding things I never knew before. Eyes wide open…full speed ahead.
- There’s a community out there for everyone. Never ever feel like you’re alone; a support system is just a click away.
Day Three Having IBD and/or an ostomy has taught me ______________.
- That no matter how much I hated it, it’s made me a stronger person. It’s made my son humble and compassionate because he’s been by my side through the worst of it. It shows me that no matter how hard life gets, I’m going to get through it.
- That I just got to take it one day at a time instead of worrying about the future.
- How strong I really am!
Day Four What do you do to make it through the rough days in dealing with IBD and/or an ostomy?
- I curl up with my heating pad, relax, and accept defeat for a little while. I let my mind and my body rest so I can hopefully have a better day tomorrow.
- Just keep pushing forward; tomorrow is another day.
- I like to take baths and veg out or lean on a friend.
Day Five What is the craziest assumption someone has made about you based on your IBD or ostomy?
- “That having an ostomy made me less whole.”
- “That I had an eating disorder and wasn’t actually sick. This came from a gastroenterologist.”
- I was diagnosed at 16. I had left school and began homeschooling bc of how sick I was. I had returned the following school year but gained a lot of weight mostly due to prednisone but also gain some healthy weight after being diagnosed bc I was getting better. I was very, very skinny up until prednisone and getting better. When I returned to school many, many months later, many assumed I was either currently pregnant or had a baby. That was fun. ????
- A previous coworker said, “oh, you have that thing where you can’t eat peanuts.“ And an urgent care Dr told me, “you don’t want to end up with an ostomy; then you will be stinky.” (Guess what; I had an ostomy for a few months, I wasn’t stinky at all!) I also had a dentist tell me, “are you sure you have UC? People with UC are skinny, and you are definitely not.”
- That I had a choice with getting an ostomy.
Day Six Tell us one negative thing you’ve experienced because of IBD, but follow it up with a positive!
- Most Negative 100%= Bowel obstructions! Positive = support from medical teams, especially the nurses!!
- Because of my UC, I’ve lost a lot of friendships, but it’s helped me understand how the gut works. So when it comes to introducing foods to my kids, I know what plugs them up and what cleans them out.
- The worst part is all the surgeries and seeing my parents be so worried about me. The best part is all the great friends I’ve made through GWG
- The most negative part is having doctor after doctor telling me I’m “crazy and it’s all in my head” the best part has been finding a doctor that listens. And all the love I’ve found through the GWG forum ????
Day Seven Despite having IBD or an ostomy, I have been able to __________.
- Despite having an ostomy, I have been able to have 2 very healthy and successful pregnancies.
- Despite having IBD (and former ostomy), I have been able to fall in love with myself.
