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Ten Years Later…

Ten Years Later…

When I was diagnosed, it wasn’t clear right away whether I had ulcerative colitis or Crohn’s disease. My disease was so progressive, and I was so sick, that each treatment was like grabbing straws in the hopes that something worked. I prayed to avoid surgery, I prayed to survive.

On the cusp of colon cancer and failing treatment, there was no way to avoid the inevitable. Surgery was the only choice. Well, surgery or quite possibly death. But I was 17 years old and the idea of losing my colon was terrifying. I remember the team of doctors-specialists, surgeons, students, all filing into my hospital room to deliver the news.

I remember my surgeon drawing a picture with a black pen on white paper. “We will cut here, remove this, and make an opening there, create an ostomy out of that…” each scribble demonstrating what he planned to do to me. It was all so abstract and unreal. It was like I was that paper person and it was as simple as drawing a cut across my tummy and pulling my intestine through my abdomen. JUST. LIKE. THAT. But I am flesh and blood and not a series of sketches on paper.

All I knew is that my life would forever be changed. Illness changes everything, losing my colon was collateral damage that this disease was leaving in its path. It was killing me from the inside, and if my colon wasn’t removed, then there was not much hope for a future. I prayed to just survive.

Go ahead then, take it out.

Surgery was scheduled, my Living Will intentions were made, I signed the papers and cried when they wheeled me away from my parents, holding my mom’s hand until I couldn’t anymore. Until I had to let go… It’s so hard to describe that fear of the unknown. I was sick. Not just sick but deathly ill. If this was my chance at survival, would I really survive? I prayed to live through surgery. I prayed to survive.

I survived the surgery, but I was left with a body that was so unrecognizable to me. Cuts across my abdomen, part of my intestine on the outside, an abnormal anatomy that was hard to comprehend when I was just a teenager. Actually, no matter how old you are, this is something so incomprehensible. Who goes to the bathroom in a bag? Who lives this way? How do I live my life going forward? I am just a kid. Why me? The litany of unending questions each one more palpable than the last. I prayed to survive. Now how do I do that?

That was 10 years and more than a dozen surgeries ago. That was 10 years and more than 100 hospital stays ago. That was 10 years and 1,000 procedures ago. That was 10 years and a lifetime ago. I will never forget that scared young girl. Now, 10 years later, although I am still in a battle with this disease that has finally been diagnosed as Crohn’s disease, I am stronger and I am a survivor. Today, I live with a permanent ileostomy and a permanent positive attitude. I survived. 10 years. I survived.


This is the surgeon who performed my first surgery

 

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Crohn’s Disease and Ulcerative Colitis Awareness Week December 1-7

Crohn’s Disease and Ulcerative Colitis Awareness Week December 1-7

December 1-7 is one week out of the year that is designated to Crohn’s and Colitis Awareness. So, as a voice for building awareness and being an advocate for myself and patients battling this debilitating disease, I wanted to share with you a few facts about these diseases. I know this is not crochet related, but the reason I started crochet was to help cope with my illness and also help pass the time in the hospital when I would be in for months at a time.

Crohn’s disease is a form of inflammatory bowel disease (IBD). It affects the entire gastrointestinal tract and can affect anywhere from the mouth to the anus.

Ulcerative colitis affects the large intestine/colon, and rectum. Symptoms include Inflammation and ulcers, diarrhea, internal bleeding, fatigue, fevers, abdominal pain and cramping, reduced appetite leading to significant weight loss. Complications from this disease and sometimes treatments can be life threatening!

THERE IS NO CURE.

 

Oftentimes serious drugs like chemotherapies and biologics are needed and/or drastic surgeries are necessary to stave off the progression of the disease. Most people who suffer from these diseases can appear “normal” or “healthy” from their outward appearance, but are silently suffering from the inside. Many are among our friends, family, co-workers, community members – millions of people worldwide have some form of IBD!!!!

It is an invisible illness that oftentimes is not discussed in everyday company. Unless you know ME or someone who has Crohn’s disease or ulcerative colitis you may have never heard of these before.

 

Have questions? Want to learn more? Ask me anything-I am an open book when trying to educate about this topic. One thing over the years I have learned is there is no shame battling illness and the stigma surrounding it. I may not look it, but I am battling this disease Every. Single. Day. It affects nearly every aspect of my life. I am not alone. I have so many friends suffering!! I am devastated to say people were lost by complications of this disease.

If we can educate just one person through our journey, through disease, then our suffering is not in vain and there is some purpose in all we have gone through and continue to face. Please, Please take time to learn more this week (and beyond) and understand how devastating Crohn’s disease and ulcerative colitis really is.

Crohn’s disease has impacted every aspect of my life including School, Employment, Relationships (Romantic or Familial), Socially, Financially, and Emotionally.

You can find more information about these inflammatory bowel diseases at CCFA.org

World IBD Day: Spread the Word

Today, May 19th, is World IBD Day. More than 5 million people across the globe suffer – often in silence – from inflammatory bowel diseases including Crohn’s disease and ulcerative colitis. I, Nadia, am one of those 5 million people, and those that know me know I will not stay silent. As long as I have a voice or platform, I will use it to help build awareness and rally for so many who continue to suffer or are no longer with us because complications from these devastating diseases have claimed their lives. Some of my closest friends have lost their fight and yet there are still people who have never even heard of IBD! How is this even possible?!

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Hospital

Hospital

I have VERY progressive Crohn’s disease. I was wrongly diagnosed at the age of 16 which sent my life on a hellish journey against this overwhelming monster.

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Crohn’s disease is a VERY serious chronic auto-immune disease causing inflammation, bleeding, swelling, and ulcerations in the entire gastrointestinal tract. There is NO cure. I have undergone life altering surgeries to remove my entire large intestine, parts of my small intestine, my rectum, and now, I live with a permanent ileostomy as a result of the destruction this disease has wreaked on my body.

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When most people look at me the most common response I get is, “but you don’t look sick.” I shouldn’t have to bear my scars to prove that I am. I have suffered through countless hospital stays, surgeries, complications, and infections. I have been the subject of multiple studies and treatments in a quest to get this illness into remission. Presently, I am taking a potent biologic drug recently approved for the treatment of Crohn’s disease, and it has shown great promise. For the first time in 8 years, I have been out of the hospital for over 140 consecutive days and am enjoying every ounce of my life that I can.

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When one lives with chronic illness we become savvy at hiding our pain. Some suffer completely in silence behind a mask that hides how terribly ill they truly are. Today, on World IBD Day, and on every day we cry out for recognition – to stop patronizing attitudes of “but you don’t look sick.” Tell me, how is sick supposed to look? To stop having IBD labeled as a ‘bathroom disease.’ To end misconceptions like if you ‘change your diet or avoid stress, everything will be alright.’ To minimize the ridiculous ad campaigns that exist further stigmatizing this illness. Today, we continue to educate, support, and build awareness so that one day a cure will exist for Crohn’s disease and ulcerative colitis and no more lives are lost. One life gone is too many. This is just a small part of the truth behind IBD.

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To EVERYONE reading my post, I implore you to educate yourself and make Crohn’s disease and ulcerative colitis a household name. Talk about IBD so you can educate others through this example. Surprisingly, once you open the door to conversation, you will find others who are also there fighting a battle of their own. Please spread the word.

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~Nadia