The Birth of an IBD Warrior: Our Q&A with "Colitis Ninja"
Recently you’ve probably seen Twitter and Facebook posts with the hashtag #GetYourBellyOut or news stories about women and men showing off their ostomy bags while wearing bathing suits. You might have never heard of an ostomy before this point, or the diseases that attack the intestines and bowel that can lead to an ostomy.
We've tried to spread accurate information about who our ostomy patients are by creating resources like "The Ultimate Ostomy Explainer" and "Five Ostomy Items You Should Not Live Without," but even we don’t understand it all. That’s why we decided to do some interviews with true “experts” in the field. Over time, on this blog, you will see interviews of people we know you will find fascinating and informative.
The first person we visited with was an anonymous ostomate blogger and advocate known online as "Colitis Ninja." We hope you visit Colitis Ninja's blog to learn more about Inflammatory Bowel Disease, Ulcerative Colitis, Crohn’s Disease and more in her funny and helpful style.
“I would tell someone newly diagnosed to go online and find support.”
FMS: What would you say to someone newly diagnosed with Crohn's or Ulcerative Colitis, or someone looking at ostomy surgery for such?
CN: When I was newly diagnosed (after all the grueling tests), I had a lot of confidence in my situation. I thought to myself: "Great! I'll just take a few pills a day, and that will be it." I was very surprised when it wasn't as simple as that. That being said, I would tell someone newly diagnosed to go online and find support. There are a lot of great people out there who are willing to help you and answer your questions. Read blogs of people who've been there! To someone considering surgery, I would say let surgery be your last resort. Try everything you feel comfortable with trying. Although I have found much relief in my own surgeries, it has not been an easy thing to endure. You will also find a lot of online support from people who've been there! It was so helpful for me.
“There's something to be said about gaining confidence in anonymity.”
FMS: In light of the #GetYourBellyOut campaign and the ostomy selfies, what would you say to someone who wants to be an advocate, who wants to speak out and spread awareness, but doesn't have the confidence to or doesn't know how?
CN: Do it. If you truly feel passionate about being active in spreading the word about IBD or ostomies, then do it. There are so many people out there trying to raise awareness in different ways. There is no one set way of doing it. What speaks to one person may not speak to another, so the more people out there raising awareness, the better. Who knows? You might be able to reach one person in a way that no one else could. That makes it all worthwhile. I didn't know where to start in the beginning, but seeing people like Sara Ringer (who also didn't know where to start in the beginning) and seeing so many people out there suffering, made me realize that more people need to speak up. For me, it was being able to "hide" behind Colitis Ninja. I was able to metaphorically put on the mask of Colitis Ninja and just start blogging. There's something to be said about gaining confidence in anonymity.
“Instead of it being your weakness, let it become your strength.”
FMS: What would you say to someone who isn't yet comfortable in their new skin, so to speak?
CN: Chronic diseases and/or ostomies are not easy to deal with. It can be hurtful and very trying. Instead of it being your weakness, let it become your strength. It may take some time for you to get used to your new way of life. You will have your "woe-is-me" moments, but you can and will get through this. You will overcome these obstacles. Again, I would encourage anyone to go online and find support. There are so many people out there who struggled in the beginning with being comfortable with their new life, but they got through it. If I can get to the point where I'm comfortable, I'm confident that ANYONE can. Positive perspectives are very powerful and are plentiful online. I have found some of my best friends online ... I even met my husband online.
We are so thankful for the opportunity to “meet” and reach out to such advocates out in the world. Their stories help you with your story. We are only helping to spread the message. If you or anyone you know could use a lift in their spirits in dealing with IBD, share this interview and tell them to go have a laugh and a hug at the Colitis Ninja.
Finnegan Medical Supply is always looking for inspiring people to talk to, so if you have a story you’d like for us to share, please email me or leave a comment below.
If you found this interview helpful, check out more information on colostomies:
The Ultimate Ostomy Explainer [infographic]
Five Ostomy Items You Shouldn’t Live Without
SuLauren Wilson is the founder of Finnegan Medical Supply, an online medical supply store based in Little Rock, Ark. She blogs regularly on issues affecting the company’s patients. Although, she has many years of experience in the healthcare industry, she is not a licensed medical professional, and the content of her posts should not be considered medical advice.