Digging in the Archives: Emails I wrote following my Crohn’s diagnosis in 2005

When I started my blog, Lights, Camera, Crohn’s, four years ago, my main mission was to be the voice I desperately needed to hear upon diagnosis. As I reflect on my 15 year diagnosis anniversary, I thought it may be helpful to give you a behind the scenes look at some of my email archives from 2005…days after finding out I had Crohn’s disease. I’ve never shown these to anyone (other than the recipients, of course!)…but my hope is that in sharing private feelings, you’ll be able to see how my perspective about life with IBD has shifted and evolved since I was a 21-year-old girl feeling up against the wall with nowhere to turn.

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Photos taken in May 2005 (prior to diagnosis) and September 2005 (while on 60 mg of prednisone).

This article is dedicated to the newly diagnosed. We’ve all been in your shoes. What you’re thinking. What you’re feeling. What you’re struggling with. We get it. It’s not fair to compare where you are in coping to someone like me who has been dealing with Crohn’s for 15 years and been in remission for nearly five.

Here are snippets from my emails to friends. Reading the pain in my words and re-living this difficult time can be a trigger, but reflecting and seeing how far I’ve come is also incredibly empowering.

“I’m having a really hard time with this, harder than I ever could have imagined or dreamed…and I’m having a hard time trying to act like everything is great on the exterior. I feel like I’m on the brink of a breakdown…the drugs are getting to me so much. I woke up with visible shakes this morning and have been shaking all day. My moods aren’t me. I feel like I am a different person and that as much as I want to be the old Natalie, it’s just so hard to wake up smiling and happy. I’m getting tired of my family constantly asking me if I’m doing ok and feeling ok and everyone staring at me while I eat…I just feel like a pity case to so many people. I feel so alone in all this. I’m trying to be upbeat…and I know that it is going to take time to get acclimated to the lifestyle changes and everything, but right now I’m just having a difficult time figuring out who I am and where I’m supposed to be in life. The insomnia has left me up every night just thinking and wondering what the future holds and if I am ever going to feel normal again.”

“I try so hard to be strong and tough about this and it just all stays bottled up and I just started crying and am having a hard time stopping. It’s just so hard. I look at pictures and think back to even graduation time and it just freaks me out that I went from living a carefree, healthy life…to this. I know it is something that I will always have and that I have to get used to it…but it’s hard for me to handle at times. I don’t mean to complain or worry you or anything, I just feel as though I need to get out some of this frustration before I go to bed. I’m scared of getting sick again and having to go in the hospital sometime again…and I just feel like I can’t go a day without a thinking about all the what ifs. You know I analyze so much…haha…it’s like a living nightmare!”

“I’m sorry if I talk about this too much. I’m sure it isn’t the most appealing or attractive thing to have to hear from your gf…but sometimes it becomes a little overbearing on me…and I can’t hide my fears when it does. I mean I refuse to let this change who I am and the life I will lead, it’s just at times it seems so much bigger than me, and so much larger than life. I know I have been complaining a lot about my puffy cheeks and stuff…and I know that prob gets old…I just get so self-conscious about it…and it just sucks that I have exactly 2 more months left on the steroid. As my dosage gets lower and lower the side effects should stop and start to go away…I’ll believe it when I see it!  I guess it’s just scary to me to see the effects of a drug that are helping me on the inside and hurting me on the outside. I just want to look the same to you as I did the last time you saw me.”

“What I won’t ever apologize for is this summer, because I was going through a living hell, and I saw which friends were there for me and which weren’t. I was ridiculously ill from June 5th-my bday (August 24) and you were angry with me for not keeping in touch. I couldn’t even stand to get myself a glass of water for weeks and was hospitalized for days. I never heard anything from you. I know that people handle those types of situations differently… but that was the hardest thing I’ve ever gone through in my life, and I really needed a strong support system. Battling with a disease and feeling like I completely lost myself has made me have to be a little selfish these past few months. I’m just coming to grips with it all now and thank God I’m feeling well…but it is still an adjustment and has given me a complete different perspective on life.”

You guys. I’m sitting here crying. I’m that girl. I wrote those words. That was 15 years ago and thinking about that time still feels like a knife in my chest. Even though this disease has enabled me to gain so much gratitude and perspective, it still robbed me of a lot. It still hurts…sometimes more emotionally than physically these days since I’m in remission. These diagnosis anniversaries stir up a lot of memories. While I choose to think of it as a time to celebrate another year of taking this disease on with all the strength I can muster, it’s also a time that takes me back to some of the most challenging and difficult moments in my life.

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I colored this in my hospital bed after being diagnosed with Crohn’s.

I wish I could hug that girl and tell her it was going to be alright. The career, the love, the family…it would all happen. If you’re in that difficult space right now coming to terms with your newfound identity following diagnosis or getting over a flare up, please know this disease ebbs and flows. It’s not a constant. The good and the bad moments are fleeting, but your resilience and your confidence in coping becomes so much a part of who you are, it’s hard to recognize who you were before.

From remission to flaring in one week: What 2015 taught me about life with Crohn’s

I woke up from my colonoscopy five years ago and was told “You’re in remission”. Tears of happiness streamed down my cheeks. I was in disbelief. Was I dreaming?! It took a decade for me to hear those words, and one week to be robbed of the title.

One week later, I was hospitalized with a small bowel obstruction. The first of three that would happen that next year. So many of us in the chronic illness and IBD community specifically, are constantly chasing after “remission”. But what does remission really mean?

Remission is different for every person, much like IBD manifests differently in everybody. When I heard the word remission five years ago, it felt magical and exciting.

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Celebratory post-colonoscopy cheesecake after finding out I was in remission Feb. 2015.

Hell, my mom and boyfriend (now husband) and I went out and celebrated with a big meal at The Cheesecake Factory. When I flared days later, I started feeling skeptical of the term and came to realize how fleeting and elusive remission can be. I laid in the hospital bed, devastated and dumbfounded by what had just transpired.

It took three bowel obstruction and 18 inches of my small intestine to ultimately be removed in August 2015, for me to reach surgical remission. While surgery is not a cure, my bowel resection provided me with a new beginning. As I approach my five year “remission” anniversary this August,

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Hospitalized a week later with a bowel obstruction.

I remain on edge. I’ve been blessed to be on cruise control with my illness these past few years. My GI has me well-managed on my biologic and vitamins, I know how to read my body when it speaks to me through symptoms, and when I suspect something is going awry, my care team and I nip the disease activity in the bud.

To me, remission is waking up each morning with the expectation that I’m going to feel well and be able to take on the day as planned. Remission is having more ‘feel good’ days than painful ones. Remission is being confident to attend social outings, travel, and do all the things I set my heart out to do, without feeling suffocated by the fear of the ‘what ifs” of a flare. Remission is being able to focus on the part of me that is so much more than my disease. remission blog

Remission tends to the be the “goal” when it comes to IBD, but it’s not always feasible. It’s easy to see posts on social media and feel like you’re failing because your body is failing you, repeatedly. It took me a decade of living with Crohn’s and surgery to be in remission.

While I’m a compliant patient, I don’t take much credit for my remission. I know how at the drop of a hat I could be rushing to the ER, unable to breathe from my abdominal pain. I remember all the flares that blindsided me and I know my body can decide to flip the switch at any given moment. I feel lucky most the time—while my Crohn’s could be worse, it could be better, too. Remission doesn’t mean that symptoms are non-existent, moreso that the majority of the time I feel well with some not so great days sprinkled in the mix. While in this state of remission, I remind myself not to take this time for granted, not to become complacent, and to stay vigilant on managing my symptoms and overall well-being.

Rather than focusing on the big “R” word that’s loaded beyond belief and placing so much emphasis on it, let’s focus on feeling the best we can each day, communicating openly with our physicians, friends, and family, and taking this uphill battle one step and one day at a time.