Laura’s Take Steps Walk for the Crohn’s & Colitis Foundation
Today, we start a conversation about an important cause close to us and one of our very own team member’s hearts. Crohn’s disease is a type of inflammatory bowel disease (IBD), causing inflammation of the digestive tract and comes with ongoing and long-term chronic conditions. Living with a chronic illness can be highly stressful and overwhelming and changes the lives of many individuals and their families. For this year’s Take Steps Walk, with the Crohn’s and Colitis Foundation, our very own Integrated Producer Laura is being featured as the Los Angeles Honored Hero. We’re so proud of her, and we wanted to hear about her personal and ongoing journey with Crohn’s disease –read below to see a glimpse into Laura’s world.
For those unfamiliar, ulcerative colitis and Crohn’s disease are inflammatory bowel diseases (IBD, not IBS!). I like to explain it as my immune system attacking my digestive system (anywhere on that path is fair game), causing inflammation and ulcers. This can result in a myriad of symptoms that include abdominal pain, diarrhea, rectal bleeding, weight loss, fatigue, anemia, and many more. There is no cure, and the exact cause is unknown, so treatment plans are designed to treat your symptoms, help you to remission and avoid relapse. Treatment plans also vary from case to case, and similar to how hard it is to diagnose Crohn’s or colitis correctly, it is equally difficult to treat.
Like many Crohn’s or colitis patients, I started experiencing symptoms during my teen years. The real problems began my senior year of high school, but I understand now that I was having issues for years. My symptoms started as minor, with constant stomach aches and urgency after every meal, but eventually progressed to symptoms that could no longer be pushed aside and ignored.
I remember the fear and shame I felt when I went to my mother and told her what I had been experiencing and needed help. I had been a very healthy kid, very active in sports, and just overall never wanted to be a troublemaker. And I equated my health problems with trouble. My mother jumped in immediately and booked doctor appointment after doctor appointment, test after test, which all led up to my first colonoscopy at the age of 18. At the time, they diagnosed me with ulcerative colitis, prescribed me some medicines, and sent me on my merry way. I was told I had a simple case, and it was implied that treatment would be fast and I would be able to move on with my life as if nothing had happened.
That prognosis led my parents and me to believe that it was fine for me to move across the country away from my doctor and support system because this would be no big deal. There was no one there to correct our thinking and explain to me what this disease meant, how hard it is to control, or recommend I defer college for a bit until I had my disease in a more manageable position. So off I went ulcers and all.
I remember getting my freshman year housing assignment and realizing I was moving into a suite with seven other girls. I felt such extreme horror and anxiety when I thought about how I would have to tell them that I needed to take over the bathroom for at least 30 minutes every night because I had to self-administer an enema and suppository every evening. I went to the bathroom up to 16 times a day and generally felt like I was losing control of my life. I was self-conscious and uncomfortable talking about my disease, especially to a bunch of strangers.
I also didn’t have a doctor on this side of the country, so I was running around LA, meeting with a dozen different gastroenterologists, being put on different medicines every month, undergoing additional tests since no medications were working, and getting increasingly sick. I couldn’t eat solid food for weeks. I lost so much weight and was so anemic my roommates were literally carrying me around campus to get to class because I didn’t have the strength to walk or bike anywhere myself.
I remember the fear and shame I felt when I went to my mother and told her what I had been experiencing and needed help.
After two years and another colonoscopy, I was finally re-diagnosed with Crohn’s disease, and unfortunately, that did not mean my troubles were over. I was on medicine for almost a decade that made life manageable, but I never gained remission for more than a couple of months. Every time we tried to wean off the medicine, I would flare up and, eventually, my body started rejecting the treatment altogether. If my dosage were too low, it wouldn’t do anything, but it would be toxic to my liver if we pushed it any higher.
My doctor at the time gave me a choice of living on steroids for the rest of my life, which is not a practical solution for many reasons or switching to a medicine I was adamant about never going on. Similar to the medication I was coming off of, it has an increased chance of cancer (as does Crohn’s and colitis, by the way), and it dramatically weakens your immune system. I was not comfortable with either of those realities as my path forward.
I abandoned my doctor, who had treated me for a decade, and found a new doctor. She sat with me for an hour, went over every piece of my medical history, and truly listened to what I wanted, what I was looking for, and my issues. She even diagnosed me on the spot (and then tested to confirm) that I was suffering from Crohn’s disease and had Small Intestinal Bacterial overgrowth (SIBO). She also recommended a new treatment option that sounded perfect for my situation had no increased chances of cancer, and would get me off taking regimented pills every day. SIGN. ME. UP. I’ve been on that medicine ever since and have been in remission for almost three years.
So here we are, fourteen years into my IBD journey and about an equivalent amount of colonoscopies later (honestly, I have lost track, I’ve done so many), and while I am in remission now, I know there is always the potential for things to change. I’d like to think I am a little bit older, a little bit wiser, and a little bit more well equipped to deal with those changes and roll with the punches at this point, but the fear is still there, and I’ve learned that that’s ok too.
As anyone will tell you, IBD is a journey, and I have so many people to thank for making my journey more manageable, better, and brighter. To my parents for taking me to a million doctors, becoming involved with the Crohn’s and Colitis Foundation, and being the best support system I could ask for. To my family and friends for always listening and understanding. To Melissa, for being a fellow IBD warrior who I can always turn to. To my doctors for managing my disease and dealing with more emotional breakdowns than I care to admit. And to the Crohns and Colitis Foundation and the Take Steps Walk for providing me with tools, resources, and an amazing community of fellow IBD patients and caretakers to lean on.
The Foundation has provided Laura with the tools and the community to advocate for herself and the entire IBD community — both patients and caretakers alike. The Foundation relentlessly works towards finding a cure for ulcerative colitis and Crohn’s disease and empowers the community with the knowledge and support necessary to fight for themselves, their treatment plans, and anything else they may need. Helping raise awareness of Crohn’s disease is something small we can all work on. Start by sharing and starting the conversation with your people. This year, go one step further by supporting Laura and her family at this year’s Los Angeles Take Steps Walk, taking place June 12th, 2022, in Santa Monica.