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This is What It’s Like To Live With Inflammatory Bowel Disease

shutterstock_147789395-ibd-alila-medical-media-openerInflammatory bowel disease (IBD), which includes Crohn’s disease and colitis, is not just like a really, really bad bellyache. It’s not a disease that strikes only the old and sickly. And it will not magically disappear if you would just eat a little better.

IBD is a chronic, lifelong condition that affects up to 1.6 million Americans, most of whom are diagnosed before their 35th birthday, according to the Crohn’s & Colitis Foundation of America. Yes, there’s diarrhea, bloody stool, fatigue, and weight loss, but there’s also joint pain, rashes, kidney stones, and more. While the exact cause of IBD is still a head-scratcher, we do know that it occurs when the immune system—which usually attacks and kills harmful invaders, like bad bacteria—goes haywire and assaults the intestinal tract. (Pick up some healthier habits by signing up for our FREE newsletters delivered straight to your inbox!)

Here, 10 people living with IBD share their stories.

Getting diagnosed can be a long road.
“I thought all my symptoms—the bloody and runny stool, the fatigue, the urgency to go to the bathroom—were because of stress or my diet. I was 19 and in college and I really thought I was causing my problems. When I finally sought help, I was diagnosed with irritable bowel syndrome; then it was lupus. Next I was told I had a gluten and dairy allergy. It was an endless cycle of wrong diagnoses and disappointment. At one point, I actually thought I had AIDS. In the end, it took 5 stressful years before I was properly diagnosed with ulcerative colitis.” –Brooke Abbott, 32, Sherman Oaks, CA

You can still be active. 

yoga
ALAN BAILEY/SHUTTERSTOCK

“I’ve always been an athletic person. I love skiing, volleyball, soccer. But as a teen, I had so much abdominal pain and fatigue that I was scared to participate. So when I was finally diagnosed with Crohn’s disease, I actually felt like I had been given an opportunity to do those things again. I felt so awful for so long that just knowing what was wrong helped me feel like I could get my life back. Today, I’m really into yoga and meditation. The movement calms me in a way nothing else ever had. And building core strength is important when you’ve got gut issues.” –Andrea Meyer, 33, Tinley Park, IL

It’s complicated. 
“Having a chronic illness is extremely challenging and discouraging. I have lost so much weight during my Crohn’s disease flare-ups and then gained so much while on steroids for treatment. I can feel 100% in the morning and be in the hospital that same night. Each day is a challenge and it’s not easy, but with time, I learned that my disease does not define me. I like to think of it as something that makes me stronger. Crohn’s has forced me to be brave. It has given me incredible perspective on what it means to enjoy my feel-good days. While there’s no cure, I know that it can be managed—and I choose to stay positive.” –Natalie Sparacio, 32, St. Louis, MO

It’s not just about pooping.
“That’s the biggest misconception: that Crohn’s disease is just a pooping disease. Yes, most of us with IBD are always worried about where the nearest bathroom is. But it’s so much more than that! We’re struggling with an autoimmune disease. Our bodies are quite literally attacking themselves, and we have to combat issues such as extreme fatigue, anemia, low vitamin levels because of malabsorption, joint pain, and more.” –Mallory Carter, 28, Fort Wayne, IN

 

stress
JAMIE GRILL/GETTY IMAGES

Remission happens. 
“For the first few years after I was diagnosed with ulcerative colitis, I had nearly constant symptoms and was grappling with the fact that I was going to have to deal with them forever. But when I switched to a new doctor and he told me I deserved to have my life back, I cried. It was turning point. We worked together and found a drug combo that worked. In fact, I actually weaned off one of the meds and am now in remission. Adherence to my medicine is such a big part of my remission, but so is keeping my stress in check. When I feel work, or any one thing, getting too overwhelming, I remind myself that it’s not worth it to put myself through the ringer.”  –Megan Starshak, 31, Milwaukee, WI

It’s hidden in plain sight.
“Most people don’t realize how sick I am, which can be pretty isolating. I do a really good job of hiding it. Even if it takes all of my energy, I put myself together before I go to work. In some respects, I don’t want people to treat me differently or feel sorry for me. So I only tell people I trust when I’m experiencing a flare-up of my ulcerative colitis. And if folks notice the weight loss, they usually assume it’s intentional because they know I play sports, and I don’t correct them.” –Hilary Rudy, 39, Denver, CO

Eating healthy looks different.
“In order to not make my symptoms worse, at times I have to avoid everything that’s generally thought of as healthy. I’ve eaten only white bread, white pasta, and white potatoes. I’ve had to live on what’s called a ‘low residue diet,’ which basically means eating foods that move slower in your system. At times I couldn’t have salads or raw fruit and vegetables. So many people want to give advice on how an IBD patient should eat without actually knowing what helps. I know fiber is important, but for an IBD patient, it can cause so many problems. I do sometimes take my chances and add some whole grains and salads back in my diet when I’m feeling good and symptoms are low.” –Karah Marie Tucker, 50, Goodlettsville, TN

Surgery may be necessary. 

ulcerative colitis surgery
DARIO LO PRESTI/SHUTTERSTOCK

“My ulcerative colitis just didn’t respond to any meds. In fact, one of the drugs I was on caused me to need heart surgery. So within a year of diagnosis, I had my colon removed. Then I had my J-pouch connected. [A J-pouch is a surgically created reservoir to store and pass stool.] Emotionally, it was rough. It was a very hard adjustment. But without a large diseased organ in my body, I was able to start to heal, to gain strength, and work on my mental recovery. IBD and surgery changed my body permanently; once I learned to accept myself and these changes, I was able to start to see a new version of myself.” –Jackie Zimmerman, 31, Livonia, MI

Talking about it can really help.

“Growing up, I never talked about my Crohn’s disease and colitis. I was ashamed. I kept everything a secret from my friends and even kept the severity of it all from my family. It wasn’t until I relapsed 6 months ago that I really started opening up. I constantly had to cancel plans with friends; I had to watch what I ate and drank again, and it came to a point where I just didn’t want to hide it anymore. I accepted that IBD is a part of me, so I decided to start being proud of myself and the obstacles I overcame—and suddenly I felt so liberated. Since I began sharing, I actually manage my disease better. I’m less stressed. The best part is that my self-confidence has really grown since I was able to be honest about who I truly am.” –Sathya Ramachandran, 31, Chicago, IL 

Connecting is key.
“While I’m still friendly with the people I knew before I was diagnosed with ulcerative colitis, it’s been difficult to keep up with old friendships. When I’m constantly sick or in pain, I can’t really go out and have the kind of normal life that people have in their 20s. Plus, I felt I had nothing in common with anyone anymore. Today, though, I have a strong support system. I have met so many great people through the IBD community. My friend, who also has IBD, encouraged me to attend a retreat with other women with IBD. I was excited to go, but nervous to travel so far while ill. And I was afraid that I wasn’t going to fit in. But it ended up being an amazing experience: I met a ton of other women with IBD; I got a lot of good advice and was able to see other women who are living great lives.” –Sarah Crotti, 27, Peckville, PA

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