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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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No Colon, Still Rollin’: World IBD Day

No Colon, Still Rollin’: World IBD Day

**Sensitive Content**

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If I could crochet a colon for myself and anyone else who has lost their intestines due to Crohn’s disease or ulcerative colitis, I would. If only it was that easy. I would stitch until my fingers fell off!! Unfortunately, I would have to crochet for millions of people who sadly have had total proctocolectomy surgery due to the devastation of inflammatory bowel disease. Today, May 19th, is World IBD Day. It is a day to recognize the millions of people worldwide who suffer from these debilitating diseases.

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I crocheted this colon (large intestine) as a symbol of loss. Crohn’s disease claimed my large intestine in 2008, only one week before my 18th birthday. On the very cusp of colon cancer, my disease was extremely progressive and surgery was my only option. The fight never ends because sadly, there is no cure. Ulcerative colitis and Crohn’s disease are the most common types of inflammatory bowel disease. Ulcerative colitis affects only the colon and rectum. Crohn’s disease can affect any part of the digestive tract from mouth to anus.
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This colon represents each major surgery; each stitch stands for each procedure, x-ray, scan, or test that I have undergone. This may seem like an unusual analogy to represent an organ or diseases that most people rarely, if ever, think about. To me, this disease changed my entire life and those changes led me here, crocheting my very own colon, and using my voice and skills to advocate for others who don’t have a platform to help spread awareness. Many of whom are no longer with us. Our diseases may appear invisible, but we are not!

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Silly, strange, serious, or an obnoxiously bold statement, however you view this piece I created, hopefully it will generate conversation for inflammatory bowel diseases. Not just on May 19th, World IBD Day, but every day of every year until we find a cure.

Please *share* this blog post and you may be surprised to find how many people YOU know are silently suffering. There is NO CURE. Help raise more awareness so that I never have to type those words again.

To learn more please visit ccfa.org

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Thank you!
~Nadia

(Some of the photos used in this blog post were found on Google.com Image Search)


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Ostomy Awareness Day 2016

Annually, the first Saturday in October marks a day of recognition for ostomates. Ostomy Awareness Day is a day to shed more light on this life saving surgery. I take this opportunity to try and educate others about this surgery which saved my life.

What is an ostomy?

An ostomy is a surgically created opening in the intestine. The intestine is then brought through the abdominal wall to form a stoma through which waste passes into an appliance on the outside of the abdomen.

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No one really knows the exact number of ostomates worldwide – estimates range from 450,000-1 million people. Many, like myself are surviving and thriving because of this life saving surgery. We would not be here without this. Ostomy surgery is often the last resort after exhausting and failing every other treatment option.

Why do people get ostomy surgery?

Cancers, inflammatory bowel disease, spina bifida, perforations, trauma, accidents, gunshots, neurogenic issues, diverticulitis and several other reasons can lead to why a patient is LIVING with an ostomy. Some patients have temporary ostomies while others, like myself, live life with a permanent ileostomy.

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What are some myths about ostomies?

Unless people are educated about this, the stigma exists for misconceptions and misunderstanding to form. Common myths about ostomates are:

  • We smell
  • We always have to wear baggy clothes to hide our appliance
  • We can’t participate in sports or be physically active
  • An ostomy is a death sentence
  • Only elderly people have ostomies

Speaking for myself, as someone who had her first ostomy surgery at 17 years old, I am LIVING proof that these are myths. My Crohn’s disease was so progressive as a teenager that I would not have survived without having my colon removed and been given an ileostomy. On the cusp of colon cancer, my alternative was to live with this surgery and try to get my life back from the grip of a horrible disease. Things are not always easy and my road to acceptance has been rough at times, but rest assured that I do not smell. I love fashion and wear a wide variety of clothing. I was never athletic, but that isn’t because I have an ostomy, it’s because I am a klutz. Ostomy surgery saved me from an absolute death sentence. ANYONE, no matter what age, can have ostomy surgery.

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I hope this helps provide some information about something that I, and so many others, live with each and every day. Thank you for the opportunity to educate and advocate on this Ostomy Awareness Day 2016 and for taking the time to read this blog and help the awareness grow!!

Without this surgery I would not be here to share my love for crochet with the world.

♥ Nadia

To read my personal health blogs follow these links:
Keep your Face to the Sunshine
A Promise of Hope

 

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