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Tania is currently the Founder and Editor-in-Chief of The Hudsucker and an Associate Editor at Womanista. With past writing credits as a freelance writer and journalist with Quietly, the International Women's Media Foundation (IWMF), and NBC News' Newsvine, she is currently a member of Indianapolis based, Society of Professional Journalists—one of the oldest organizations in the US that promotes and represents journalists. As a writer by vocation and entrepreneur by nature, Tania is a life long learner who enjoys traveling and meeting new people. She is an avid Indianapolis Colts, Elvis Presley, and baseball fan as well as a lover of pancakes and fine cheeses, film, and music. Tania is a Hoosier at heart with a passionate wanderlust for always traveling and road-tripping across the great United States. She is currently attending Ball State University in Muncie, Indiana and studying journalism. Follow Tania on Twitter: @westlifebunny.

My Sister’s Gutsy Journey: Raising Awareness for World IBD Day

{Image Credit: Crohn’s & Colitis Foundation of America}

More than 40 countries around the world will come together tomorrow to help raise awareness for Crohn’s disease and ulcerative colitis in honor of World IBD Day. Celebrated annually on May 19, this year’s efforts focus on a global video movement that encourages those affected by IBD to share their journey in short videos with the theme, “United We Stand.”

The campaign calls for anyone impacted by IBD, whether patients, caregivers, family, gastroenterologists, nurses, and friends, to share their story with the world. While many have been contributing their own accounts of life with Crohn’s or ulcerative colitis, the videos will go public on World IBD Day and viewed at the foundation’s official website.

Today there are more than 1.6 million Americans currently diagnosed with IBD, with as many as 70,000 new cases springing up each year—most of whom reach an official diagnosis before the age of 35. While these chronic, life-long conditions cannot be cured, they can be treated.

For those not aware, IBD stands for inflammatory bowel disease. Comprised of two very serious, chronic digestive diseases, IBD affects five million people worldwide. Directly affecting the digestive system, Crohn’s disease and ulcerative colitis causes intestinal tissue to become inflamed, form sores, and bleed easily. While the disease has a tremendous impact on the physical being, it also takes a toll on the emotional and social well-being of an individual.

This is something that my 34 year-old sister, Nadia knows too well.

“It took a chunk of my life away,” she tells me. “I never imagined I’d be here today. I honestly thought I wouldn’t have a chance to live a normal life like everyone else I knew.”

When Nadia turned 16, things started changing in her life at a drastic rate. I was not able to play outside with her because she would complain of a constant, excruciating pain in her stomach. She would stay in bed for hours upon hours, with doctors diagnosing her with “growth spurts” or “womanhood on the horizon.”

She became misunderstood by social circles, feeding excuses to friends that she could not attend their “Sweet 16” parties or go to the movies because of stomachaches and not to mention, the constant running to the bathroom, and boy, did those excuses boil their teenage blood. Obviously, with it being the late 1990’s heading into the early 2000’s, no one knew that a stomachache could be more than just a stomachache.

Friends started fading, growing tired of her excuses and Nadia began spending more time alone with her stomach pain. It was a difficult time for our entire family because not a single doctor could diagnose her correctly and frustration began to kick in.

She suffered for a year until she was officially diagnosed with Crohn’s disease. Crohn’s disease most commonly affects the end of the small intestine (the ileum) where it joins the beginning of the colon. Often appearing in “patches,” the disease can affect some areas of the GI tract but leave other sections completely untouched. The inflammation could also extend through the entire thickness of bowel walls. For those afflicted, symptoms include abdominal pain, cramping, gas, bloating, fatigue, anemia, diarrhea, and loss of appetite.

While Crohn’s disease generally runs in families with 20 – 25% of patients having a close relative who also has the disease, recent reports have shown that younger immigrants are at a greater risk for developing IBD. In the study by Canadian researchers at the Institute for Clinical Evaluative Sciences (ICES) and the Children’s Hospital of Eastern Ontario (CHEO), the findings highlight that the younger the age of children when they arrive to Canada, the greater their risk of developing IBD. Such research hits home as my sister, born in the Middle East, immigrated to Canada in April of 1983 from Luxembourg.

{Image Credit: Getty Images}

While Crohn’s disease is more common among Caucasians, children of immigrants from the Middle East, North Africa, and South Asia had the same incidence rates of IBD as children of non-immigrants, according to the ICES’ findings. However, those same children of immigrants from East Asia, Eastern Europe, Central Asia, Latin America and the Caribbean, had “lower incidence rates of IBD compared to children of non-immigrants.” The study notes that environment plays a huge factor into the development of IBD.

Prescribed with Pentasa, a medication that treated and prevented flare-ups of ulcerative colitis, things went well for a while and Nadia got her sunshine smile back. But shortly after high school graduation, new pains began to develop. Upon seeing several doctors and hearing out various opinions, it was discovered that the Crohn’s disease had formed fistulas—a common complication that causes abnormal passages that extend from muscles in hollow organs. She had her first operation in 2000 and that was a battle in itself.

Going under the knife has the ability to change someone, and I do not mean that in celebrity re-doing their nose kind of way. She went through a very dark period and it hurt our family to see her go through that and know that there really isn’t anything we could do to help.

We moved out to the countryside in 2003, and it was the best thing for us. Nadia loved horses and our new home would overlook a stable where she could sit for hours and watch horses gallop by. In such a sense, she would regain aspects of her childhood that she lost from the disease just by sitting and admiring these beautiful creatures, drawing in her notebook, and painting scenic landscapes.

However, that realm of calm would soon vanish as she would start getting flare-ups. What are flare-ups? They’re terrible. They intrusive, come up when you’re least expecting, and have the power to really rob you of a good week. Flare-ups happen when symptoms of Crohn’s decide to return after a period of remission or in Nadia’s case, low disease activity.

In the next few months, she would lose massive amounts of weight; throw up meals that did not agree with her and was advised by doctors to write a food journal. Eventually, every food noted in that journal would defy the doctor’s theory, confusing several of them and prompting our family to find second (third, fourth, fifth, etc.) opinions. Unfortunately, her flare-ups lasted five years with not a single doctor knowing what triggered the occasional occurrences. Every blood test, ultrasound, and CT Scan showed up “normal.”

Nadia relaxing on the hospital’s rooftop days before her surgery in July, 2009. {Image Credit: Tania Hussain}

It was only in 2009 that Nadia could finally find relief when her new specialist Dr. Stotland diagnosed her and found out the Pentasa had stopped working for years. It was decided that she needed to be admitted to a hospital after testing a new-found lump and discovering an abnormality.

While it was only supposed to take a weekend, her hospital visit lasted a month and a half because the abscess would not stop draining. When it was time for the last option—surgery—things were not looking good. Nadia had grown so gaunt and weak that surgeons would enter the room and walk straight out refusing to do the surgery because of her drastic weight loss, simply saying, “Good luck” or “Hope she gets better.” They all made it seem that she was going to die and that her case was hopeless. And at one point, my family and I started believing it.

With the help of Dr. Stotland, Dr. Soutter, a surgeon, finally came in that same week and said it “had to be done.” He decided two days later to operate. She went in for surgery on July 4, 2009 and it was a day our family will never forget. Sitting in that waiting room for four hours and twenty-one minutes was torment because for a split second, I thought if this surgeon comes out and says something I don’t want to hear, I wouldn’t have a sister anymore. And it would be just like that. A lifetime lived, and a forever friend gone in a second. I would be alone and lose every ounce of myself.

The surgeon came out—like a lightning bolt—with a somber look on his face, and I could feel the Earth pull me deep down into my feet in those few seconds of not knowing the reasoning behind his expression.

“She’s okay,” Dr. Soutter said.

His voice boomed in my ears, as I watched a wave of relief cast over my parents’ expressions. The surgeon went on to say that, what they discovered inside her was worse than they imagined—fistulas lining her small intestine, along with abscesses. Because of what he saw, he decided to perform an ileocecal bowel resection—basically, a surgical procedure in which the diseased part of her small intestine was removed, then resected. It was discovered that out of the five types of Crohn’s disease, Nadia had ileitus. This type of Crohn’s affects only the ileum, with symptoms similar to ileocolitis, but with complications that include fistulas or inflammatory abscesses in the right lower quadrant of the abdomen.

It was a nightmare that robbed our family of happiness, trampled on our hope, but never tarnished our faith. We knew Nadia was always a fighter and though small in size, that should never be confused with stature. She has tremendous strength and is the toughest person I know. Battling something so terrible like Crohn’s has made her the bravest person I know.

Six years later and thankfully, as of this year, is officially in “remission.” Ta-da!

“This disease had taken over my body for over a decade,” Nadia says. “I lost my youth, it shattered my confidence, I lost my friends because they didn’t understand what I went through, but now I have a second chance in my life. I have a second chance to live again and be normal for once. This disease didn’t own me, nor did it define me. It just tested me. And now with this second chance, I don’t have to worry the night before about what tomorrow is going to be like. I can try my hardest to regain the time I lost despite the years gone by. I’m ready for what else I’m to face in my life.”

Nadia and I dining at Steak ‘n Shake from earlier this Spring. {Image Credit: Tania Hussain}

We’re going to be tested through our whole life and that’s just a fact. It may not be understandable at first, but the trials we face in life can be a sign that the Universe intends good for us, because through the challenges we face, we have the opportunity to perform good deeds. Today, Nadia is active in the Crohn’s disease community through social media, helping and talking to other patients about the disease and letting them know that they are not alone in their struggle.

As someone who watched her suffer, I learned that these dark periods in our life not only make us stronger, but they ground us, humble us—they make us see the light in things. And I got to see the light through her.

Nadia regained her own independence on July 4 2009, with an unshakable confidence that restored our family’s faith and hope. She has fought Crohn’s disease with a solid fist and has been able to take back her life from a disease that robbed her of those adolescent years. She may have lost the time in between, but it’s what she does from here on out that counts the most. I’m really proud of who she is today, and what she can and will become. It’s a slow start and baby steps, but she’s definitely on her way.

Between the symptoms and the surgeries, the types of medication used, IBD is not easy to talk about. There are so many more people in this world suffering from Crohn’s disease and ulcerative colitis than we really know about, and those numbers increase each day. With such little public understanding about the pain and chronic suffering IBD patients so courageously cope with every day, now is the time to raise awareness for something that deprive so many of a normal life.

Please do your part and help out today!

To learn more about Crohn’s disease and ulcerative colitis, visit the Crohn’s & Colitis Foundation of America or Crohn’s and Colitis Canada. For more information on World IBD Day, visit their official website and follow the hashtag, #WorldIBDDay on Twitter.

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5 Comments on “My Sister’s Gutsy Journey: Raising Awareness for World IBD Day”

  1. EtoileStewart May 18, 2015 at 12:21 pm #

    Reblogged this on sleep2dreem.

  2. Lisa May 19, 2015 at 10:16 pm #

    Hi, Tania, this is Lisa Pineau from MJO. My nephew has Crohn’s and is in and out of ER’s all the time. It’s been a rough road. Your article is great!

    • Tania Hussain May 20, 2015 at 1:00 am #

      Hi Lisa! Thanks for reaching out. I’m sorry to hear that your nephew has Crohn’s and is in and out of the ER all the time. It’s never easy seeing that. Very sad to hear about it. I can just imagine what you and your family have been going through, but please know that I will be thinking of you all and hoping things get better.

  3. Mirza Kaiser Basravi June 16, 2015 at 4:02 pm #

    The title ‘Gutsy’ justifies itself. If I or anyone say ‘I understand’ what it is like for the person who suffers from the difficulties and for a loving and supportive sibling, we really mean to say that we can’t imagine what it is like. This article does nothing but offers an inspiration to others that any challenge can be overcome with courage and support for each other. May God give the family extraordinary courage and strength to overcome all difficulties.

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  1. My Sister’s Gutsy Journey: Raising Awareness for World IBD Day | westlifebunny - May 25, 2015

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