Caring for Crohn's & UC

World IBD Day 2015- A Day of Thanks

May 19, 2015 at 2:35 pm Rebecca K. 3 comments

Today, May 19, marks the observance of World IBD Day, a day led by patient organizations across four continents to raise awareness and educate the public about inflammatory bowel diseases. Around the world, more than 5 million people live with Crohn’s disease and ulcerative colitis, two debilitating digestive diseases that have detrimental effects on patients physically, emotionally, financially, and more. I know that my blog has been stagnant for months, but I figured today was a great day to return to it.

On World IBD Day last year, I talked about feeling defeated by the lack of progress being made for IBD patients. I was feeling pessimistic after the passing of a young IBD patient and a segment on a major news station that confused IBD with IBS. After a lot of thinking, I decided this year I wanted to be more optimistic.

I just returned from spending four days in Washington, D.C. as part of the IBD Social Circle, the online movement dedicated to bridging communications gaps and inspiring and educating the IBD community. While there, I got to spend time with some incredible IBD activists, like Ally Bain (the girl behind Ally’s Law/Restroom Access Act), Laura of Mangia Paleo, Brian of the Intense Intestines Foundation, Stephanie of The Stolen Colon, and so many more. I also was provided the opportunity to attend Digestive Disease Week, the world’s largest gathering of physicians and researchers in gastroenterology, hepatology, endoscopy, and gastrointestinal surgery. After spending a weekend surrounded by strong, passionate advocates and bloggers talking about Crohn’s disease and ulcerative colitis, I decided that this year’s post would be dedicated to thanks.

Since Dan was diagnosed with Crohn’s disease over eight years ago, we have experienced a lot of difficult times- a microperforation that resulted in an e.Coli infection and five day hospitalization, a bowel obstruction, a bowel resection, thousands of dollars in medical bills, hours spent worrying over the what ifs, and much more. When you are dealing with a serious chronic illness, it’s hard to not dwell on the bad times- I know that I am definitely guilty of that. I never gave much thought to the good that has come of caring for someone with Crohn’s disease. However after this weekend, I realize that I have a lot to give thanks for.

So, on World IBD Day 2015, here is what I am thankful for (in no particular order):

Yale New Haven Hospital & Remicade

When Dan was first diagnosed in 2006, he saw a few doctor’s in New York and was put on Asacol and 6-MP. Unfortunately, none of those doctors appropriately explained to him that, while he was on medication it was still important for him to be monitored regularly by a doctor to ensure that his symptoms get better, not worse. So for about three years, he didn’t see a doctor, didn’t have colonoscopies, and essentially was unmonitored, thinking going to the bathroom 15-20 times a day was what he should expect living with this disease.

When we moved to Connecticut in 2009 and I assumed the role as his caregiver after we were married, we made an appointment to see Dr. Deborah Proctor at Yale New Haven Hospital. I know I have written before how much I adore our medical team, but I don’t know that I ever fully explained how their care basically saved his life.

When he first saw Dr. Proctor, Dan weighed about 115 pounds (less than I did). He was emaciated and so fatigued he could barely get out of bed, let alone function normally. Dr. Proctor scheduled a colonoscopy during which we discovered Dan had developed a stricture so bad that pushing a regular scope through caused a microperforation and subsequent infection. Dan was started on Remicade right around then and, while he did have to have a bowel resection due to the stricture, it, combined with the care of his medical team at Yale, has been a life-saver. In the almost five years since he was started on Remicade, he’s had nearly 38 infusions (that’s close to $500,000 before insurance) and gained over 30 pounds. He has completed two half-marathons, plays softball, and has a full-time job.

We are incredibly lucky because throughout this process, Dr. Proctor and the entire Yale team has been incredible. They are extremely reachable and are always happy to answer any of our questions (no matter how crazy I am being). When he has an issue, they always find a way fit him into Dr. Proctor’s busy schedule. And even if we can’t be there in person, I am floored by the responsiveness to our needs of the team by phone and email.

This past weekend, I had the pleasure of seeing Dr. Proctor (photo above) while in DC and, as I listened to stories from my peers about their doctors and how many of them are unhappy in the quality of care from their medical team, I can’t help but feel so incredibly thankful that we found the Yale team when we did. I don’t know where we would be without them.

Friends

Over the past five years, we have been BLESSED to meet a group of incredible individuals who have all been touched in one way or another by Crohn’s disease and ulcerative colitis. The people we have met through my blog, advocacy, and Team Challenge are incredibly strong and passionate individuals who, while living with these debilitating diseases, are beacons of sunshine in a world that is often muddled by grey.

Meeting fellow bloggers in person was the best experience from this past weekend. Reading their stories online is so moving but to actually meet them in person and hear from them directly is motivating to say the least. The best part is that these people become your family. I have only met a few of the individuals I was with in person before, but for the ones I was meeting for the first time, it felt like I knew them my entire life as we were bonded together by a common interest- helping those living with IBD. There was no awkwardness, no need for icebreakers or small talk. We just jumped right into friendship and spent the weekend laughing, talking, and supporting each other.

Our Team Challenge Connecticut & New York friends are some of the craziest, funniest, and compassionate people we know. We talk to them daily and they are always there when we need someone to talk to or someone to make us laugh. Our ongoing group text messages never fail to actually make me laugh out loud, whether we’re talking about weirdest things done while pooping or chronicling travel through an airport (complete with a man rocking a skirt and another one knitting).

IBD

Oddly enough, the third thing that I am thankful for this World IBD Day is inflammatory bowel disease. Let me clarify- I am not thankful that Dan or anyone I know has this disease and I wouldn’t wish Crohn’s disease or ulcerative colitis on anyone. But I am thankful that, through my experience as a caregiver of someone with this chronic illness, I have found something I am so incredibly passionate about- patient advocacy.

Ever since I was young, when something bad would happen, I coped by getting hyper-involved in whatever community was appropriate. In high school, when my friend committed suicide, I became heavily involved with the Yellow Ribbon Suicide Prevention and Education Program. When my mother was diagnosed with non-Hodgkin’s lymphoma in 2006, I started participating in Relay for Life and fundraising for the Leukemia & Lymphoma Society. Although Dan was diagnosed with Crohn’s in 2007, I didn’t get involved with CCFA until 2010 and didn’t start blogging until 2012 because, quite frankly, I didn’t fully understand the disease and didn’t feel I had anything to contribute to the conversation. But since I began volunteering, writing, and advocating online, I have found my niche with patient advocacy. Without IBD, I don’t know that I would have ended up finding my way to this place.

I am sure there is a lot more that I am not thinking of that I am thankful for, but this is what stands out the most to me on World IBD Day 2015.

What are you thankful for? Join the World IBD Day conversation online using the hashtag #UnitedWeStand2015.

*Disclosure: My travel arrangements and attendance for the IBD Social Circle was paid for by Janssen. All thoughts and opinions expressed here are my own.*

Entry filed under: Advocates, Caregiving, General Disease, Team Challenge, Treatment. Tags: 6-MP, blockage, bowel resection, caregiving, Chronic Illness, Colitis, colon, crohn's, Crohn's and Colitis Foundation of America, crohn's disease, ibd, inflammatory bowel disease, Team Challenge, uc, ulcerative colitis, World IBD Day.