Nancy

Earlier this week my 15-year “No Crohn’s Surgery Streak” came to an end (longest to date). Crohn’s sucks, we need a cure. I’ve kept this quiet (denial) but I have awesome friends and an amazing care team at the Brigham. I’m so thankful to be on the other side. Now I just need to work on recovery.

Most of you know that I was diagnosed with Crohn’s disease in my early 20’s, my senior year of college (after being told through high school that my stomach issues were in my head). 32 years ago, I was 23 but weighed 84 pounds (soaking wet), I was on my 52nd day of tube feeding and was only allowed a max of 6 ounces of clear fluids a day by mouth. I took the elevator to bed at night with help from my parents because I couldn’t manage a flight of stairs. My face was chipmunk fat from prednisone, my hair was pretty much falling out all over. I had spent all of April in the hospital and a good chunk of the first 2 weeks of May. I was being prepped for my first surgery and argued with the nurses about drinking Go-Lytely (totally unfair that such a gross drink was going to be my first taste after 7 weeks of not eating).

Mr. Powers, an old family friend who was recovering from a surgery, snuck out, stole his own car, and came to visit me. Mrs. Powers was not amused but it meant the world to me. It was a dark time, but I had hope that there would be a cure some day for Crohn’s Disease and in the last 32 years amazing new medications have been developed and we are so, so close.

Let me go back and talk about food for a minute. When you are diagnosed with IBD you realize food can be the enemy, well actually your immune system attacking your digestive system is the actual enemy, but you start to fear food. Or worse, food is taken away.

My first hospital stay ended up with me spending over 30 days on ‘bowel rest’ at the Newton-Wellesley Hospital. When I was finally released it was on tube feeding, aka more bowel rest at home for 5 more weeks the first time, and another 7 weeks a second time. I had the added bonus of inserting a tube up my nose into my stomach and having liquid nutrition fed through the tube from 4pm to 6am. I named the IV pole George. I swore a LOT at George. This is not glamorous I know, but it’s all about awareness. Luckily the treatments have improved so we celebrate food!

I’d also like to address fatigue. It’s real, and it is constant. I didn’t actually know this was a thing until a few years ago. I learned fatigue is part of Crohn’s and happened to mention this to my mother. She exclaimed quite loudly, “you have been saying ‘I’m tired’ since you were 22!” I guess I never realized I am always tired. I guess I am just used to it. Fatigue when it comes to Crohn’s patients.. it’s real.

I have had some great days, some tough ones, pain, embarrassment, surgeries, dreaded tubes, hospital stays, the list goes on. But I also have had amazing support from my friends in college who really got me through some of my darkest and scariest moments. I have had my brothers and sister who worked hard to make me laugh (and sometimes worked to make me cry, because prednisone and siblings don’t always mix).

…And then came Team Challenge and the Crohn’s and Colitis Foundation.

Back in my 20’s and even most of my 30’s I kept Crohn’s hidden away and a secret, but I found my Team Challenge family through the Crohn’s and Colitis Foundation and now have an incredible network of other IBD warriors. I have learned that through awareness comes hope for a cure.

I know because of Crohn’s I can do just about anything, I am strong and so are the other IBDers I have met. They are my superheroes.

Every year the first week of December is Crohn’s and Colitis Awareness Week but for patients or those newly diagnosed, every week is awareness week, every day is awareness day. It is everywhere, that is the thing about IBD, there are no days off. Patients, their caregivers, friends and supporters live with the disease every day. From thinking (and over thinking) food choices, or the lack of food choices for some, or the lack of any food for those on complete bowel rest. There is the bathroom anxiety, needing to know the local public bathrooms just in case. All the medications and medical equipment, infusions and blood tests (and the money all of those cost), the joint pain, the skin issues, the hair loss, the night sweats, the ridiculous number of Dr. appointments (and the co-pays that come with them), the fatigue (like I mentioned the fatigue!)… and do not forget the anxiety, the isolation. It is not just a bathroom disease, it’s so much more than that.

There is also the good that has come with IBD and that is the people, truly some of the most incredible, strong and caring people and for that, I am truly grateful.

I found Team Challenge back in 2010 when I went to an informational meeting about a half marathon training program. This was strange for many reasons. First, I had never run before, not even a mile, and I hated running. However, I was finally feeling better and I wanted to do something. I had no idea what Team Challenge would do for me. I got so much out of this program; the friendships, the support and just knowing other people with the same aches, pains, fears and frustrations were here too was life changing. I have met the most amazing people because of Crohn’s which include the patients and parents of patients. All of them are the toughest and kindest people around. Did I mention that they are also fun? I’m talking poop jokes galore with this group.

So, I hate running but I love this team and there is nothing better than seeing everyone wake up early on Saturdays, run together and cheer for each other. Together we raise money for hope for everyone touched by IBD.

My hope is for a cure, and until that day comes, I hope for understanding and compassion. You probably know someone with Crohn’s or colitis, although you may not be aware because these are diseases that people don’t talk much about, they are embarrassing, painful, sometimes debilitating and often frustrating. You may not be aware because we look fine on the surface. We are warriors, some of the toughest and most incredible people I know I met through Team Challenge. They don’t just run and walk, fundraising like crazy all the time. They offer hugs, shed tears with you, share their stories, and most importantly they all get up each day and live fiercely despite the pain and discomfort. If you have a friend with IBD, don’t be afraid to ask about it. Offer a hug, be patient when we cancel plans because of fatigue or pain, and know that we are so thankful for your support.

Marathon #73 – Recap