Posts filed under ‘General’
I am writing with some exciting and bittersweet news for you.
I recently accepted a position with the Crohn’s & Colitis Foundation of America to work on its social media and public relations efforts. I have been heavily involved with CCFA for many years, first through its Take Steps community walks and then through its Team Challenge endurance training program. I greatly enjoyed my experiences with these programs and am incredibly excited about this new opportunity to work with the national organization that is working tirelessly to find a cure for Crohn’s disease and ulcerative colitis and improve the lives of the 1.6 million Americans living with these debilitating diseases.
While this new move is extremely exciting for me both personally and professionally, it is also bittersweet. I will be taking a hiatus from Caring for Crohn’s and turning the reigns over to Rosanne in the interim. I will miss engaging with all of you on here but I am confident that I am leaving you in the best of hands.
Once I am more settled in this position, I will update you on the future of Caring for Crohn’s.
When I was diagnosed with ulcerative colitis nearly a decade ago, I was told my case was “mild” and I should go on living my life. I had no idea what I was in for at that point. In fact, I was relieved to find out it was ulcerative colitis (which seems laughable at this point) after being told for more than five years that it was “all in my head” and I just needed to relax. I was told to take Asacol and resume my normal activities.
As it turns out (I’m sure you’ll be shocked by this) I couldn’t resume my normal activities. Inflammatory Bowel Disease (IBD) turned my life upside down. A few months prior to my college graduation from St. John’s University, I found myself unable to travel to take my finals and instead of jumping into the work force that I had prepared so hard for, I was just trying to get by.
Determined not to be slowed down by my disease, I applied to graduate school and got into my dream program at New York University. If I couldn’t work, I’d advance my career by getting my master’s degree. It was a great goal, but each day I was getting sicker, and I was deteriorating rapidly. I wasn’t eating, with fears of an accident during classes.
Four weeks into my program at NYU, I was waiting for the subway I noticed I could not turn my neck to check if the train was coming. I thought it was strange and mentioned it to my parents when I got home. A few hours later, when I got into bed, I couldn’t breathe. My family rushed me to the emergency room, where we quickly found out I had developed pneumonia from being so run down due to my flare up.
My return home after a week in the hospital was short lived. After a day or two, I couldn’t walk up the stairs without getting winded. A quick chest x-ray showed pneumonia in both of my lungs, which we later found out was caused by a hospital-acquired staph infection. I was rushed back to the hospital, this time to ICU, and was pumped with the strongest antibiotics available.
If you know anything about IBD, you know that antibiotics and digestive diseases make for a messy combination. In short time, I was diagnosed with C. Diff and I was back to the hospital for a third time. I had to withdraw from my semester at school and it took months to recover. I still have PTSD from this experience.
However, that was my only IBD-related hospital stay in a decade with the disease. I never had to have surgery for my IBD. None of my flare ups required an emergency room visit. That’s not to say I’ve had it easy. For a couple of years, I would flare up every three to four months. I would commute with the worst cramping you could imagine and my fatigue was impossible to overcome. I felt at times like a prisoner in my own home. Inflammation has popped up in my ears and eyes at various points. At the ripe old age of 27, I got shingles on my face.
Right before my wedding in 2011, I seriously considered having my colon removed, but it thankfully never came to that. My doctors found the right combination of Ascaol, Remicade and 6MP to manage my symptoms and I’m living a relatively normal life.
So why do I feel like I’m stuck in the middle? Like many patients, I look to the internet for support and a shoulder to cry on. On the internet I find amazing advocates who are doing so much to spread awareness and fight for patients. There is no price that can be put on the value of what they do. Yet their diseases are often significantly much more progressed than mine. They are in the ER at a blink of an eye. Their chronic pain requires frequent surgeries and hospital stays. Some of the advocates I’ve followed through the years have even died from complications due to IBD.
Every time I go online to vent or complain about my symptoms, I find someone who has symptoms 100x worse than I do. I feel guilty…oh so guilty…for even thinking of complaining. I feel like I should be grateful that my disease hasn’t progressed beyond a certain point, but instead I am depressed that I don’t feel well enough to feel like myself.
I’m here to tell you today that you aren’t alone. Yes, you. You, who is well enough to work but feels exhausted all the time. You, whose IBD is progressed enough to be a pain in the ass (literally) but not enough of a pain to allow you to go on disability. You, who is flaring up and is in the bathroom 15 times a day but is still going to school. You, who is afraid to get in a car for fear of an accident.
You aren’t alone. You’re allowed to be in pain and you’re allowed to be pissed about it. Every day is a struggle for you. You learn to expect the unexpected with IBD. You may not live with a j-pouch or an ostomy, but you’re sick too, and it’s OK to grieve about your disease. CCFA’s “Escape the Stall” campaign wasn’t egregious to you because that’s the life you live every day.
I hope that I could be your voice. Thank you, Rebecca Kaplan, for inviting me to blog about IBD here. I hope that I do this group (that’s stuck in the middle just like me) justice. I invite you to let me know what you think in the comments section below or connect with me on Twitter @RoeMoPR.
Keeping a blog current takes a lot of work and content. As many of you know, I’ve had a lot of trouble writing as often as I should in order to keep the blog up to date. After a lot of thought, I decided that I could use help writing on the blog and interacting with Caring for Crohn’s readers.
So I am incredibly excited to announce that my friend Rosanne will be joining Caring for Crohn’s as a new contributor!
I first met Rosanne in 2013 through the Crohn’s & Colitis Foundation of America’s Greater New York City Chapter’s Communication’s Committee (man that’s a mouthful). Rosanne was diagnosed with ulcerative colitis in 2006. She is very active in the IBD community, not only on the communications committee with me but also as a volunteer with Staten Island support groups and a Take Steps participant. She is a public relations professional, a Disney enthusiast, and a new mom to an adorable five month old baby boy.
Rosanne will be blogging here about her experience with ulcerative colitis and as a new mom with an inflammatory bowel disease as well as general information about IBD. You can follow her on Twitter at @RoeMoPR.
Please join me in welcoming Rosanne to the Caring for Crohn’s family!
Jeffrey, 41, Crohn’s disease
I was diagnosed with Crohn’s disease in the 1980’s and went through years of being sick but just wanting to feel better and live my life. I didn’t know much about the disease, and, due to a lack of resources and motivation, I didn’t see any point in learning more about my disease. I spent years ignorant of what I had.
In 2011, my life with Crohn’s disease changed, and so did my goals. My father-in-law, who lived with ulcerative colitis and had an ostomy, passed away due to complications from his disease. I looked up to him in my battle with IBD and he was an inspiration in how he lived his life. I also went into my worst Crohn’s disease flare that same year. I started going through depression and felt like my life was going downhill real fast.
Three years later, my life has completely changed. Having IBD has built up my character and confidence. Thirty years ago, I didn’t fully understand Crohn’s disease and wouldn’t talk to anyone about it. Now I am well educated about my disease, research and the new treatments that are being developed. I run a support group that helps other find their voice to speak up. I feel like I have been quiet with my disease for way to long and now that it has helped define who I am, I will never keep quiet about it again.
As many of you know, I am a big supporter of the Crohn’s and Colitis Foundation of America (CCFA). I am an alumnus of its Take Steps and Team Challenge programs, sat on the board of its Connecticut Chapter, and I am currently helping its New York City and Fairfield/Westchester Chapters develop communications strategies. I believe that they are the organization that has the most amount of clout in the inflammatory bowel disease (IBD) field and has the ability to create the most change and bring us closer to finding a cure for Crohn’s disease and ulcerative colitis.
I recognize that there is some discontent in the IBD community over how CCFA engages with them. There have definitely been times when I have been unhappy with how they have responded to a certain article, their use of levity about a serious topic (clown shoes in the Escape the Stall campaign), and how slow they are, at times, to jump on the bandwagon with social media campaigns. That being said, with a $70 million budget, they remain the biggest player in the IBD world. Therefore, I believe that, regardless of your personal experiences with CCFA, it is an organization that we all should rely on for the well-being of those with Crohn’s disease and ulcerative colitis.
I was recently given the opportunity to sit down with Rick Geswell, president and chief executive officer of CCFA, to learn more about him, about CCFA and its initiatives, the future of the organization, and the future of IBD treatment. I will be relaying my interview with him over several blog posts in the near future and to start, here is the first in the series- Meet Rick Geswell.
Disclaimer: The details I am reporting below are directly from Rick Geswell of CCFA and do not represent my personal beliefs (although many are aligned). If you want to know if I agree with something, please feel free to ask me in the comments or email me at firstname.lastname@example.org.
I know that I have been radio silent on the blog for several months now, and I am sorry for that. Life has gotten very busy and the blog has taken a backseat to everything else. But I am still looking at the comments and am involved with the online IBD community- just to a lesser extent.
Two quick things before I get into this post-
- New Huffington Post piece is up- World IBD Day: It’s Not All Sunshine and Flowers
Now onto tonight’s post.
I have an incredible group of friends who all have IBD that I met through Team Challenge last year- Kelly (Crohn’s disease), Laura (Crohn’s disease), and Katie (ulcerative colitis). They all live in Connecticut and I was so sad to leave them last year when Dan and I moved for my job. It’s nights like tonight when I am reminded how much I truly love having them in my life.
Tonight I have been part of a group text message about things that these ladies have done while pooping (at one point, I had 43 unread messages). Summarizing it won’t do it justice, so I am just going to write it out verbatim for your enjoyment.