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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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18 responses

  1. Nadia you are an amazing person. Amazing for not only surviving but thriving and sharing with the World along the way. I hope your disease rest for a while and let’s you live in peace and love with your new husband. Thanks so much for sharing such a personal journey.

    Liked by 1 person

  2. I understand your pain. I had to have a colostomy when I was 11 because I was shot in the abdomen and the bullet ricocheted through my intestinal tract. I was fortunate to have mine reversed though. It is devastating to go through. I’m glad your surgery put you on a better path. Your a wonderful person and a great crocheter. Your scars mark your survival and strength in life. Be proud of them. Use them to teach others that all is not lost. Hugs to that 17 year old scared little girl, and Thank You to the person you have become.

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  3. we survived and we are bullies 😉 I got a urine stoma with my 13th and they removed my bladder. After 11 corrections and a coma, I am still alive and kicking and love each day of my life ❤

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  4. Such an amazing person! Wow you definitely are a survivor. Hope you continue to live in health, love and happiness. Keep up the great work and look forward to watching for many of your fantastic crochet patterns and instructional videos.

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  5. You can be proud! I have colitis, so I know the pain, the ‘why me’, I was 18…
    I love your creative mind and your positive attitude! It cures us, I’m sure of that!
    Big hugs from France,
    Evelyne

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  6. I find it amazing the amount of people of all ages that have this disease. My husband has UC. He’s still trying to figure out what meds will help him. You have shown such strength and courage in all this.

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  7. Thanks for sharing your journey! My best friend from HS was finally diagnosed with Crohn’s after years of the unknown. Hers started at about the same age as you. She is now 60 years old & still kicking!

    I love your patterns & your positive attitude!

    Happy Halloween, Beverly

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  8. You are a very brave and loving person. Sharing your story will, no doubt, be inspirational to many people. Sharing your talent and positive outlook are also inspirational to many people. God has blessed you with a loving family, including your new husband, your crochet and artistic skills, and a positive outlook which you so lovingly share with others via your blog. I pray for you often and will continue to do so.
    Blessings,
    Carolyn

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  9. You are amazing. I love your outlook on life and the strength you project. I also love your crocheting. Thank you so ever much for sharing.

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  10. You are an inspiration. You have turned your experience into a way to spread hope and love to others. i love your blog and thank you for sharing.

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  11. I’m glad you are here! I agree it is hard for someone so young to go through and still young and still going through it. I love your outlook on life and of course your amazing crochet enthusiasm and your own enthusiasm. Keep up the good faith. I will be keeping you in my thoughts and prayers. Have a Great Day Sweetie! Your friend Amanda

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  12. You are such an inspiration as well as master fiber artist. Everything you do is beautiful. Best wishes for you and your future.

    On Tue, Oct 30, 2018 at 10:57 AM YARNutopia by Nadia Fuad wrote:

    > Nadia Fuad posted: “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 surg” >

    Like

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