It’s hard to describe how I feel about today. On this day five years ago, Colitis Ninja was born. It’s hard to say that I feel excited… am I really supposed to celebrate being landed with an incurable disease? Am I excited that I had to start a blog to learn how to cope? That’s not really it either. What I guess I am truly excited about is that I was finally able to get past the pain of living with ulcerative colitis. And blogging helped me do that.
I Discovered the Ninja Within Myself
If I had not started blogging, I truly believe I never would have gotten out of the downward spiral in which I found myself. Because just TWO WEEKS after I started blogging I found out I had to have surgery. After I began blogging, I feel like I was able to get past the pain. I discovered the ninja within myself. Shortly after that, I realized that not only did she symbolize my own battle, but the battle of thousands of other patients with inflammatory bowel diseases as well. It made me feel really good knowing that the pain I went through, and in some ways still struggle with, helps other people. It makes it all worth it.
Hindsight is 20/20
Looking back, there are a lot of things I wish I knew when I was initially diagnosed. And because I still love helping others, I thought I’d share my top five things I wish I’d known when I was diagnosed with ulcerative colitis.
5 Things I wish I Knew at Diagnosis
5) Ignorance is NOT Bliss
I cannot tell you how important it is to know your disease inside and out. When I was first diagnosed, the only thing I knew about inflammatory bowel disease was what I saw in my mother. She has mild Crohn’s disease. I remember her having several bad days, but I’d never seen her hospitalized. I just thought she had a tummy ache every now and then. Because of that, I didn’t think I would have too much to worry about. I honestly wish I had someone warn me. I wish someone had told me that it’s not not as simple as an upset stomach. I wish I knew that ignorance is not bliss.
4) There is a False Sense of Security in Diagnosis
I really thought it would be easy to achieve remission. I didn’t know just how serious inflammatory bowel disease can be. I certainly didn’t know the possible complications. Usually, when you get an answer, you can breathe easy. I thought if I just took my medications, I’d be well on my way and living my life. I thought everything would go back to normal. I ended up feeling very afraid about a week after I got my diagnosis. There is definitely a false sense of security in diagnosis.
3) Not all Gastroenterologists are IBD Experts
I was vastly disappointed to realize that there are far too many GIs out there who do not know much about treating patients living with Crohn’s disease and ulcerative colitis. I actually had the doctor who diagnosed me that in 2 years’ time, I’d know more about my disease than she did. This did not inspire confidence. Since then I have seen over and again patients reaching out to other patients before talking to their own doctors because they aren’t confident in the doctors’ abilities. I think honest communication between doctors and patients would be extremely beneficial in getting the right treatment. Even if patients need to be referred to someone who knows more about the disease.
2) Support is More Important than You Think
I don’t care who you are, eventually you WILL need support. Whether you’re battling your first flare, a seasoned patient, or have just recently been diagnosed, you’re going to benefit GREATLY from connecting with patients who have been there. I can’t tell you how freeing it is to hear someone say, “me too!” Where do you find them? I would start on Instagram and Facebook. Feel free to connect with me (@ColitisNinja). I love talking with other patients.
1) Be Your Own Advocate
I truly wish I had been a better advocate for myself in the beginning. I wish I’d researched more. I wish I’d known more. I wish someone had been there to provide me with resources. I was lost. A book that I would recommend for ANY chronic illness patient is The Patient’s Playbook. You can read my review of it here. Take charge of your health. Get ALL of your records. Seek out the best doctors–experts in your specific disease.
Final Thoughts
Now, I want to give a huge thank you to everyone who has been there for me during the course of my disease. I think you know who you are. I also want to thank all of you, my readers, for sticking by me on this crazy journey. As we enter year six of my blog, I have so many things I’m trying to accomplish. There are multiple posts that are currently in my drafts that I’m slowly working on. The biggest project I’m working on now is my graphic novel. I’ve been working really hard on getting this done. It’s a slow work in progress, but I know I will eventually get there. To learn more about the project, please visit this page. Take Care and Keep Fighting!
Great advice! Thank you for all the info you provide to our community. We may not be able to control this disease as much as we’d like, but you help us make informed decisions.
Thank you for your kind words, Sherri! People like you help keep me going! Thank you again!
Your story inspires me…. but also makes me sad….. how did we not get diagnosed earlier, how do doctors miss it? It all started for me in my 20’s with what I thought was IBS, after the birth of my 1st child things started to accelerate, doctor put it down to child birth complications and two years later I was pregnant with my son and flaring badly, iron levels in my boots, by the time I was heading back to work, I knew my body was not working properly, I had a diagnosis at this stage, acute ulcerative colitis, but all the meds were failing me and I was so full sure they would work and my life would go back to normal, I ignored the terrible state my body was in, it was now normal to me and I had found a way to cope. My saving grace was the IBD nurse in the hospital, who convinced me I needed help, I nearly lost my colon, but managed to keep it after a months battle in hospital. My body was close to giving up altogether and family and friends, including me were in shock at what was happening to me. I came through with the help of infliximab, but it is a bumpy road. I am on max oral meds, and highest dose of infliximab every six weeks since 2016, I have a great life but still get flares on the meds, cant imagine how bad I would be if not on them. I have a beautiful family, full time job, loving family and friends, but I can’t help fearing for my future…. what lies ahead for me, I’m only turning 40 this year and I would like to be around for another 40 at least…. I have never written about my disease before or talking in depth about it, I just like to think I’m on top of it and let everyone else think the same…. I listen to u and wonder is there a right way to approach this disease…. my instincts say no, but I wonder if I went down the route of getting my colon out, could I avoid future complications of the disease getting worse….. doctors only want to deal with the here and now. Thanks for all your advice, humor and keeping the topic out there, it definitely helps me. Advice appreciated 💗👍🏻😊
My best advice would be to research and read everything you can. And find support. Because I guarantee you someone is going through a very similar situation. It has ALWAYS helped me to know that I’m not alone.
Well said