This post originally appeared on the Huffington Post; however the stories included below are the full versions and not the ones that appear externally.
December 1 marks the start of Crohn’s and Colitis Awareness Week, an important week within the inflammatory bowel disease (IBD) community to bring attention to Crohn’s disease and ulcerative colitis (UC), two debilitating digestive diseases that cause crippling abdominal pain, persistent diarrhea, rectal bleeding, and weight loss.
More than 1.4 million Americans live with these diseases, yet most people are unfamiliar with them, thinking that IBD and irritable bowel syndrome are synonymous, or downplaying the symptoms.
“One of the most challenging things is that every patient’s disease is different,” says Rick Geswell, president and CEO of the Crohn’s & Colitis Foundation of America. “We know that what works for one patient, may not work for another. And it’s so unpredictable. Some patients are so sick that they can’t even leave their homes. Others may have mild disease for most of their life and then all of sudden they flare and land in the hospital. That’s why it’s so important for all patients to rally together — especially during awareness week.”
As Geswell says, it’s hard to grasp the reality of living with these diseases. So in order to explain what it’s like have an inflammatory bowel disease, I asked several patients to share their experiences.
Kelly, 30, indeterminate colitis
I was diagnosed with ulcerative colitis in 1999 when I was 15. I started to realize my bathroom habits were changing for the worse- I was going more often and my stools were becoming loose. I was put on a low fat, low fiber diet with high doses of Prednisone and Asacol. I went into remission until 2001 when I had a minor flare that was treated with a Prednisone enema for about six months.
After that, I enjoyed a nine-year period of remission. It was incredible- I could eat anything and just had to take three tablets of Asacol three times a day. I was living the life. I went on vacation for a week and forgot my medicine, but I was fine- no flare. So I decided to test my disease. That was the wrong idea as I became extremely sick. My doctors tried to treat me with Prednisone and a limited diet, but that didn’t work.
In January 2011, I was hospitalized and treated with intravenous Prednisone. I also started Remicade. After six months, the Remicade stopped working. I was in a constant battle with my body- taking Imodium, high doses of Prednisone, self-medicating, and still losing weight before my eyes.
Around Easter in 2012, I knew I had lost a fighting battle. I was hospitalized yet again, only to learn that surgery was my only option. Everyone wants to believe they can win and beat themselves, but my body had won. In May 2012, I had five feet of my large intestine removed and woke up with an ostomy bag. The doctors wanted to try and save the rest of my intestines in case a reversal of the ostomy was possible. At that time, my surgeon realized that I had Crohn’s disease and ulcerative colitis (Note: a patient cannot have both diseases at the same time. When a patient exhibits symptoms of both Crohn’s disease and ulcerative colitis that cannot be distinguished as one or the other, it is typically called indeterminate colitis).
Three months went by, then six, then nine months, then a year. I was losing hope of having my ostomy reversed. I was put on Humira to treat my disease but when it didn’t work for over a year, I made the biggest decision and had the rest of my large intestine, rectum, and anus removed in August 2013. This surgery made my ileostomy permanent. However, it didn’t end there.
For the next 15 months, I battled drainage and pain in my rectal area. I had five minor procedures to fix the issues, but all failed to solve the problem. Two weeks ago I had a muscle flag and rectal reconstruction surgery to try and fix this problem. I’m relearning how to walk with my left leg because that’s where the muscle was taken for the procedure. However, I am hopeful that this will be the fix that I desperately need in order to go back to living my life.
Having IBD has made me a stronger person. I believe that I can take on anything and I’ll get through it, no matter what.
Ally, 24, Crohn’s disease
After months of abdominal pains, urgent trips to the restroom, and fatigue, a pediatric gastroenterologist diagnosed me with Crohn’s disease—an illness that my family and I had never heard of before and so knew nothing about. Previously referred to as the healthy child in my family, at the age of 11, I had a chronic illness, which became much more severe while I was in high school.
The first time my Crohn’s disease almost killed me was at the end of my freshman year when I had emergency surgery due to a perforated colon, resulting in a gallon of waste poisoning my organs. After eight months with a colostomy to allow my intestines to heal, I had a surgery to reverse it. Complications from the second surgery caused me to have two blood infections, an intestinal infection, and an inflamed liver. That was the second time the doctor was not sure I would survive. A year later, I had a third surgery to get rid of scar tissue, and, since then, I have been in remission, meaning my disease has been inactive. Much of this is also due to having a quality medical team, strong support system, and effective medical treatment.
Despite these hardships, I have made many friends because of my disease, built a strong support system, learned to take advantage of opportunities, and learned to be more grateful. Having an inflammatory bowel disease means that I have experienced pain but have also come to better recognize the good, the successes, the opportunities, and the achievements that also arise. Helping to get the Restroom Access Act passed in Illinois and in other states is one of several examples of this.
Having IBD means seeing the bigger picture while also continuing to appreciate the small and simple gifts and pieces of good news. Having IBD means living beyond the illness and not allowing it to define who I am but, instead, be part of a story in which I have come to know what I want to do with my life: secure civil rights and protections for people with chronic medical conditions and disabilities.
Piper, 10, Crohn’s disease (as told by her mom)
Piper was diagnosed with Crohn’s disease when she was eight after developing a perianal abscess. She became septic and went by ambulance from our local hospital to Connecticut Children’s Medical Center. Within 24 hours of being admitted, she had a fistulotomy and was diagnosed with an inflammatory bowel disease, which was confirmed two weeks later to be Crohn’s disease.
Since she was diagnosed, we have tried to manage her disease through a variety of medications, but they have failed to date. She has not been able to get off of steroids yet without going into a flare. Piper is currently on Entyvio, the most recent medication approved by the FDA to treat Crohn’s, and will be starting a gluten-free FODMAP diet with hopes to wean her off steroids after her next infusion.
Having Crohn’s disease means she has to watch what she eats. Piper doesn’t like that she can’t have popcorn anymore and that she has to be careful and avoid seeds. She can tolerate something one day, and not the next. Aside from the pain she experiences, Piper says she “doesn’t look forward to eating because Crohn’s has taken the fun out of it.”
Brian, 32, Crohn’s disease
When I was 11, I started having stomach pain but wasn’t sure what it was. I noticed that none of my other friends were having problems when we ate pizza after a Little League game or orange slices after a soccer game, but I was. Soon my parents noticed that I was different and took me to see a gastroenterologist who diagnosed me with Crohn’s disease.
Between the ages of 19 and 21, I had 13 minor surgeries for infections in a 20-month time span. However, as my condition worsened, my drive to challenge myself and my body became greater, and I began climbing, hiking, biking, kayaking, skiing and doing every other outdoor activity I could.
I had two bowel resections to remove diseased portions of my intestines when I was 27 and, a year later, I had surgery for an ileostomy. This past summer, I had another surgery to remove my rectum to prevent a recurrence of disease in that area.
To me, having IBD is about adversity and learning how to make the most of a bad situation. Social situations can become anxiety-filled and activities can become overwhelming. Swallowing pills, injecting medicine, regular hospital visits and surgery have become part of my life. It can be excruciatingly hard, but we don’t have a choice other than to battle back.
Sarah, 30, ulcerative colitis
I was diagnosed with ulcerative colitis at 15 years old. I was sick for more than eight months before my diagnosis and blamed myself for being sick. I thought what was happening to me was normal (i.e. a part of puberty), which I was still in the midst of at the time.
In between becoming sick and being diagnosed, I suffered from urgency, bloody stool, and an inability to go anywhere without knowing the exact location of the nearest bathroom. My doctors tried everything under the sun to treat me, but nothing worked and my risk of developing colon cancer was approximately 35 percent.
It was at that time that surgery became my only option. My colectomy was performed in between semesters of my senior year of college. I went back to school in diapers, still figuring out what I had experienced. While surgery meant no more urgency or significant risk of cancer, there are new issues that I hadn’t anticipated, including diet restrictions. However the pain is now gone (most of the time).
The denial of being sick that started when I was 15 never truly went away, though it has become better through therapy and writing. During the last two years, I have finally been able to admit I went through trauma, and that it’s all right to feel sick.
IBD is a part of who I am. I am a person with a disease, not a diseased person and I will never let being sick stand in the way of my success.
Ryan, 41, Crohn’s disease
I was diagnosed with Crohn’s disease on March 2, 2009 and tried just about every medication to manage my symptoms I could to no avail. Two years later, at 120 pounds (I’m 6’1” and usually weight 180 pounds), I had my colon removed. However, this is NOT a cure for my disease.
Just last week, I had a colonoscopy that showed massive ulcerations and inflammation in the portion of the intestines that I have left. It also showed two very long and deep lacerations, which pose a threat of perforation.
Having IBD means to me that I live my life mostly in fear – fear of an uncontrollable flare-up (which I’m currently in) and fear of needing more surgery. However, I won’t let that fear stop me from living.
Instead, I work to raise awareness of these diseases, including raising money for research by attempting to swim 24 miles across Lake Erie. I’ve attempted this twice and while I haven’t completed the full swim, I will continue to do so until a cure is found for IBD.
Entry filed under: Advocates, CCFA Awareness Week, General Disease, Treatment. Tags: CCFA, CCFA Awareness Week, colectomy, crohn's, Crohn's and Colitis Foundation of America, crohn's disease, Crohn's Sucks, Crohns & Colitis Awareness Week, Entyvio, IBD Awareness Week, ileostomy, indeterminate colitis, ostomy, Prednisone, remicade, restroom access act, uc, ulcerative colitis.