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Silver Linings

November 25, 2013

A routine trip to the doctor turned into a drawn out ordeal this past week when a regular 45 minute office visit lasted nearly an entire day. I was sent into a long series of tests and CT scan of my abdomen over the suspicion of another abscess. It would not have been so bad, nor would I have been so impatient, but today I had plans; plans that were interrupted by this unexpected detour in my schedule. Shouldn’t I be used to this by now?

At this point, I should remember to chalk this up to “normal for Nadia,” and shake it off. However, this disturbance in my day not only affected me: I was supposed to be meeting someone for the first time, and I had made a commitment to meet them around noon.

Well, noon was long gone by the time I shuffled my way around the clinic, to the lab, to the hospital, to the waiting room, to drink the contrast needed for the CT scan, another hour wait, and then finally off to radiology. The entire time I was thinking that this was not the first impression I wanted to make today to this individual. A frazzled and frantic rush out of the hospital to my car and finally I was on the highway toward my destination–not bad. I am only about a half a day late.

Better late than never

I guess it won’t matter if I am on time or hours late–I was now on my way to meet a young woman around my age that I was introduced to only through the pages of Facebook. She has Crohn’s disease and is facing possible permanent ostomy surgery, and we had agreed that today we would finally meet face-to-face.

There is always that feeling of apprehension that comes with first meetings and first impressions. Will this be awkward? What will she be like? Will we understand each other? Will we be fast friends?

I didn’t have to worry at all. Instantly, we clicked. We bonded over the mutual understanding of this disease and from all things women our age think and feel about wanting a life outside of the entrapment of all that is tied into our illness. I decided I can’t keep this introduction and meeting to myself. She is someone that I want to introduce to everyone here on the UCVlog.

Why? Because meeting her was like looking at myself. The feelings she is having right now are those that I, and many of us, understand all too well. We are not only in the powerful grip of a disease we cannot control, but when this disease has taken a turn for the worse, the only way to overcome the progression is to take that dreadful step into life changing surgery. Those are the feelings we have when we run out of options. So, with that being said, I want to introduce Jordan.

A brief look at Jordan’s journey

Jordan was misdiagnosed with ulcerative colitis when she was an infant. She was eight months old when she began her journey. It was hard for me to imagine that she has lived nearly her entire life without knowing anything different than this. Jordan had a total proctocolectomy at 11 years old, lived with a temporary ostomy, had takedown surgery to use her j-pouch, and now, 10 years later, is facing possible j-pouch failure due to misdiagnosis and living her life as a permanent ostomate.

This was all too familiar territory for me. I know exactly what the emotional upheaval of being where she is at in her journey feels like. It kept hitting me during our visit that my journey began only a mere six years ago, and I tend to describe events in my life as “before” or “after” getting sick. It was difficult to comprehend living a life where one never knew a “before,” and how long Jordan has been going through all she has to face. She also battles hyperthyroidism and Celiac disease.

Let’s talk poop and life

There is this instinctive part of our human nature, I believe, that instantly connects us with people who are going through similar physical and emotional circumstances. That connection increases and becomes stronger when one can recognize and empathize with someone sitting right across from them who just “gets it.” Those that have gone through this know that facing permanent ostomy surgery is not an easy place to be. Some of us are thrust into this because there is no other choice: it is a life or death situation. Others are faced with this because the alternative is a depleted quality of life; again, there is no other choice.

No matter what, this feels like one of the most difficult situations to be in. The anxiety that accompanies surgery is off the charts; all the questions, all the what-ifs, the “how will I live the rest of my life this way”, and the big one: why me? The list goes on and on. Meeting someone who you can confide in and talk with candidly over topics that otherwise would not be discussed in casual company is an invaluable gift. There is no shame and no topic is off limits. Truth be told, I RARELY EVER show anyone my ostomy/appliance. Well, with Jordan, there was an understood, no holds barred rule, and before long we were comparing scars, I was flashing my ostomy bag, we were openly talking about poop and how we are learning to accept this fate.

Aside from the obvious topics of poop, intestinal troubles, ostomies, and j-pouches, topics such as: dating, college, employment, our futures, and living life independently were talked over in great depth with laughter and a few tears. It was as if Jordan and I had been friends for so much longer than just a few hours.

We find strength in numbers

There is immense value that comes with identifying others who do know and do understand all the ups and downs you are going through. I have the honor of having met so many others out there who do get this. I wanted Jordan to know and understand that she is NOT alone. There are so many groups, individuals, and friends that have impacted my journey. I have passed those all along to her, so you may see her from time to time on our page as well as others. We all benefit from support and share a common link that has brought us here.

It is an even rarer gift to have the pleasure to meet ostomates, j-pouchers, and IBDers face-to-face. I had this happen a few times in my life, and all of you online have impacted my life in a thousand positive ways. These are relationships and friendships that have made this unpredictable, painful, and crazy journey so much more bearable. I hope that I can make that same impact on others too.

It feels comforting to me that my journey through illness is not without reward. Taking this negative and trying to do something positive helps me on my path to acceptance. I have been trying to understand that everything happens for a reason, and the friends we meet along the way become the silver lining on dark cloudy days. Thank you to Jordan, and all of you, for being my silver lining.

“We enjoy warmth because we have been cold…We appreciate light because we have been in darkness…By the same token, we can experience joy because we have known sadness…” Unknown

~Nadia

Silver Linings

Silver Linings

Share a story about someone you have met through your journey with IBD that you feel understands everything you are going through. It can be someone you met online or in person.

3 comments

  1. I am glad I found your blog. I am on a journey to find a healthy balance in my life mainly my weight, but I am also on a silent journey to find out all I can about IBD. My son was diagnosed last year with colitis at 19. I usually have control over the things in my life, but feel helpless when it comes to this. I don’t know enough about it to truly help him so I am hoping to learn more from you. Thank you for being there to share your experiences and wisdom.
    xox


  2. Nadia,

    My name is Casey and Jordan is my precious baby sister. This post moves me to tears (I’ve read it about 100 times and am not even close to sick of it yet!) We are all overwhelmingly grateful that you and Jordan have found each other. To walk beside someone through illness is not ever the same as walking in his or her footsteps. You are such a gracious, intelligent, and inspirational young woman and what you are doing for Jordan and the IBD community is immeasurable. Bravo, sweet girl, bravo!


  3. Beautiful ;-)



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