Life and Living with Crohn's Disease

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Living with Crohn’s Disease Part 1: Early On

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 As often happens on these days that I get my Remicade infusion, I find myself feeling reflective. Add to that the fact that I had an appointment with my GI yesterday as well as the various mental ups and downs and processings of the previous month, and I find myself contemplating all manner of things–particularly living with Crohn’s Diseas and what it means for my future. 

Writing a post called “my life with Crohn’s” would be like writing a post called “my life with my period,” or something equally savory and ick-inducing. I write this blog to speak to the larger picture, the larger condition. That is why when I wrote my posts about Diagnosis and living life on your terms I wrote to be applicable to all chronic conditions/life changing moments/big ass super scary stop you in your tracks decisions. 

But today? I think it is finally time for me to talk about my life with Crohn’s. Maybe it is that I’m bringing you all in to get to know me a bit better, or the fact that I’m about to be another year older (but CERTAINLY not wiser). But I think that it will continue to shed some light on who I am, why I am the way that I am, and, I truly, truly hope, give some hope to those that live with this condition, and others.  

swift live every day of your life suzlyfe

I do ask that you please bear with me–I am going to keep this as un-technical as possible, and in so doing may have to be a bit more ambiguous and less “correct” than I would like. I also ask that you respect that this is MY journey and MY reality–YOUR journey and reality will differ! And I also ask that you respect the fact that this is both the easiest subject for me to address as well as the hardest, the most close to home. So please respect that I am going to tell this story as I can–the way my brain can work through it.

Previous Posts on Living with Crohn’s Disease and other Chronic Conditions:

These posts largely deal with the mental side of coping with disease, so I thought that today I would give you a glimpse into the physical side, past and present, just to establish a baseline, and then I want to give you all the chance to ask some questions and see what you are interested in learning about.

Please also see the Crohn’s And Colitis Foundation of America for more information on Crohn’s and Ulcerative Colitis as well as current treatments and research. 

My Life with Crohn’s Disease: Pre and Post Initial Diagnosis

 living with crohn's disease suzlyfe

Summer 2001 (pre and post initial diagnosis)

Think of hemorrhoids, the worst menstrual cramps possible, and a lower GI flu (dry heaving, essentially) all the time, and then….nothing. And then all over again. We thought that I had a infection or bacterial imbalance in my digestive system, so we dosed me up with antibiotics, and off I went to camp, only to come home 4 days later, so ashen and yellow gray from anemia that my own mother didn’t recognize me as I got off the plane (this was literally weeks before September 11). My first ride in our new blue Chrysler Mini Van was home from the airport. Oh, and you think that I have night sweats NOW? Thank goodness I had 2 twin beds–I would switch in the middle of the night as I came in and out of fever. 

night sweat meme

But I was lucky–I had a pediatrician who recognized the signs and got me into see a specialist, who immediately started the diagnosis process. And I got better, well, ish.

January 2002–4 months after diagnosis

This was during a time when I was perhaps at my rawest, my sickest. I was 13 years old, in 8th grade. I had a disease that you couldn’t really talk about, and I felt, well, atrocious. I had had a small surgery right before Christmas break and tried to go to school for a half day only to faint after an hour of being there. Needless to say, they let me chill out until after break. I still took all of my exams on time, and completed all of my work, haha. You will see that this is an ongoing thing with me–my dedication to my family (particularly my mom and then Alex), my pursuits (ie the horses and running), and my work keeps me going with the going gets tough. And humor.

Courtesy of Ange

Courtesy of Ange

At this time I was taking about 31 pills a day, to cover various things (Ritalin, Allergies, by this time I was on Prozac to help with the anxiety) in addition to the Crohn’s. This was also the time of the Anthrax scares (post 9/11), and I lived in Atlanta, so as they put me on Cypro (which I hated and made me terribly motion sick), we joked that I was responsible for opening all the mail. 

During this time, I took my diet back to basics, another subject that I have discussed (overtraining for the stomach). I largely focused on white flours, oatmeal, eggs, chicken, trying to get a yogurt in a day to keep some bacteria in my gut (thus my love for go-gurt, but Ro-Gurt, in particular).

If you don't like Scooby Doo, please leave the Suzlyfe. Immediately.

If you don’t like Scooby Doo, please leave the Suzlyfe. Immediately.

As well as a healthy diet of cookies–chewy chipsahoy were a fave, and Goldfish. No fruits with skins (especially not blueberries), tomatoes, or fibrous veggies. Interestingly, I don’t look back on this period and think about what I didn’t have–in fact, it is hard for me even to remember. I think we just found creative ways for me to have what I liked–like iceberg lettuce, some romaine, balsamic vinegar and lemon juice, honey mustard. This is when dressings started always being on the side, and cows milk was no mas. 

IN MY DREAMS

IN MY DREAMS

And the f-ing Ensure drinks. Which would show up from time to time. 

But it wasn’t all bad. I started yoga in fall of 2001, and those private lessons remain the basis of my practice. I saw a therapist that helped me discuss largely every BUT Crohn’s, ironically.

brian suz Collage

For more on the horses, see this post.

I continued to ride when I had the strength and the pain levels were low enough–if nothing else, we would just go. And I had my mom. Every morning, I had a decision: to lay there or get up and try. If I could get out of bed, Mom might worry less. If I could go to school for half a day, I could go to the barn and see my pony and horse and feel alive for a bit. If I could get out of bed, I could fight. I wasn’t going to cry–other people had it worse, like my brother’s friend who almost died from leukemia. 

I will admit that I was hard on myself–I always am. But that strength, that will to NOT BE A VICTIM–that is what drives me. I think this is when I started to let go of being “perfect”: I realized that life isn’t about that. I had always been wise beyond my years (hello, I came to terms with my mortality at age 10 while watching Armageddon), but this is truly when I started to find the gap between myself and my peers widening. Not because I viewed them as less than, or even too superficial–this was the time of makeup and terrible style for me because it gave me freedom and made me feel good–but rather just because of the simple maturity gap.

I seem to have regressed since then....

I seem to have regressed since then….

So the horses became everything. School was the remainder. And Mom was the background driving me crazy (:)) and keeping everything together. Keeping me moving. Helping me to laugh, giving me a hand to practically break when it hurt so badly I didn’t know if I would break. Just letting me cry when I needed to, and sometimes just crying with me–letting me know it was ok to be upset, to be angry. But always staying so strong for me, while I’m sure her heart was breaking. 

And then I started Remicade. And my life changed once more. 

To be continued.

What are some questions that you all have for me? They can be technical, or contemplative. If you feel uncomfortable asking me here, please feel free to email me at suzlyfe (at) gmail (dot) com. 

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96 Comments

  • Reply Amber

    Okay, not going to lie, this made me cry a bit and miss my mom hardcore, “just let me cry, and be so strong for me while her heart is breaking” That line could NOT ring any more true for my mom, and ALL that she has endured and done for me, and all of my combined conditions. In addition to my IBS, I suffered a lot of other health disorders/diseases growing up that I keep much more personal, and she was there every step of the way.

    I am so glad that you are in such a better place now…I had a friend who had Crohn’s, she’s had almost all of her intestine removed actually, thank you for your bravery, and strength, but most of all, for sharing <3
    Amber recently posted…ProHydrate – About TimeMy Profile

    April 7, 2015 at 5:45 am
    • Reply suzlyfe

      You and I–we get our strength from women who have literally given it to us, and sometimes to their own detriment. I think, of all the moments when I am healthy, my happiest are when I see my mom and she isn’t worrying about me–those moments mean everything. And I think that those of us with IBS/IBD often deal with far more than just it–and that is part of what makes us so kick ass πŸ˜‰

      April 7, 2015 at 4:56 pm
  • Reply Dannii @ Hungry Healthy Happy

    I am happy to hear that you are in a better place now. To be honest, I really don’t know a lot about crohns, but I know a few people that have it. Thanks for sharing your personal journey with it.
    Dannii @ Hungry Healthy Happy recently posted…Comment on 15 Minute Salmon Tacos with Avocado Cream by DanniiMy Profile

    April 7, 2015 at 5:53 am
    • Reply suzlyfe

      It’s one of those diseases that is so apparent and yet such a spectre. I am happy to share more, and I think that my next post will lay it out a bit more.

      April 7, 2015 at 4:54 pm
  • Reply Stacie @ SimplySouthernStacie

    Thank you so much for sharing your story more, Suz! One of my dear childhood friends was diagnosed with Chrohn’s disease in high school. I guess my question would be how often you experience “flare ups”? She seems to be doing so well and then suddenly will be bed ridden for a few days or something.
    Stacie @ SimplySouthernStacie recently posted…Easter Weekend 2015: Barre, Weddings and GolfMy Profile

    April 7, 2015 at 6:03 am
    • Reply suzlyfe

      Definitely a good question, and an important one for me to address–I will be sure to!

      April 7, 2015 at 4:53 pm
  • Reply Heather @Fit n Cookies

    While I know the story since I bombarded you with 20 questions the first time we met, I love that you shared this. I think a lot of people have different ideas of what Crohn’s is and the symptoms that appear. It’s nothing like the stomach flu you get over in a few days. So happy Remincade is helping, though!!
    Heather @Fit n Cookies recently posted…Make It Count Cardio WorkoutMy Profile

    April 7, 2015 at 6:13 am
    • Reply suzlyfe

      It is so weird to have Crohn’s, because on the one hand, it can come and go like a breeze, but on the other, it is always in the background.

      April 7, 2015 at 4:52 pm
  • Reply Beth @ Running with the Sunrise

    Many big hugs to you for having to go through this. I can’t even imagine what it must have been like to be so young and so sick. Glad you’ve found ways that help you cope with the disease and help you feel more normal. Looking forward to reading the next post in the series!
    Beth @ Running with the Sunrise recently posted…Giveaway: 4 Months to a 4-Hour Marathon BookMy Profile

    April 7, 2015 at 6:18 am
    • Reply suzlyfe

      Thanks Beth! And, well, yeah, it was interesting to go through this at that time. Luckily, no one was ever mean–I’m not sure how that would have affected me.

      April 7, 2015 at 4:52 pm
      • Reply your, mommy, Clare

        There were people who didn’t understand or were completely ignorant of what Crohns or UC entailed. You had a teacher in high school who gave you a hard time ONCE. He was horrified when he understood and he became one of your greatest supporters. He did not understand, until he did

        April 9, 2015 at 6:01 pm
        • Reply suzlyfe

          Mr. Myers? Well, if it was him, I fainted in his class, so there you go

          April 13, 2015 at 8:36 am
  • Reply Kate @ Baking in Yoga Pants

    I admire you and your strength to live, share, and own your story. Your mom sounds like an amazing woman, much like you!
    Kate @ Baking in Yoga Pants recently posted…TYT – Home ImprovementsMy Profile

    April 7, 2015 at 6:19 am
    • Reply suzlyfe

      That is the greatest compliment anyone could ever give me–that I am like her!

      April 7, 2015 at 4:51 pm
  • Reply lindsay

    this –> NOT BE A VICTIM–that is what drives me. –> that’s why i love you. strength to overcome. and thanks for being raw. I so get this and understand it all. It’s good for people to know this disease. We all need to be there to support, ya know?
    lindsay recently posted…Coconut Rice and Watermelon Salad Bowls – Rehydrate and RefuelMy Profile

    April 7, 2015 at 6:44 am
    • Reply suzlyfe

      And thank goodness for it–it takes a village, just like supporting an Ironman!

      April 7, 2015 at 4:50 pm
  • Reply Deborah @ Confessions of a Mother Runner

    That is so much to go through at such a hard age to begin with. Being a teenage girl is so rough without having to deal with so many health problems. I can’t even imagine. Thanks for sharing your story and so glad to see that you are in a more stable place medically. Your family sounds like an amazing support system to you. You are very lucky to have them. I really don’t know much about Crohn’s and this was informative.
    Deborah @ Confessions of a Mother Runner recently posted…Week 2-Rock Your Core ChallengeMy Profile

    April 7, 2015 at 6:45 am
    • Reply suzlyfe

      Thanks Deborah–I’m glad that it helped you to understand a bit more what it is like. I get so angry when I hear about people’s family abandoning them because they are sick. How is that even an option? They didn’t do this to themselves!

      April 7, 2015 at 4:50 pm
  • Reply Michele

    I totally feel for you, and this was really hard to read. It’s almost physically painful for me to hear about other people’s pain, especially digestive pain since I can relate to all of that. My daughter’s best friend is 8 years old and by the time she was 5 she’d already had 2 surgeries due to UC, it’s seriously heartbreaking to me, but I realize it’s these things we go through that make us strong, and ultimately who we are! I completely know what you mean about not being able to talk about it and also having to be way too focused on how the food you eat affects you at such a young age. Really glad you’re doing a lot better with it nowadays.
    Michele recently posted…Preaching What We Can’t PracticeMy Profile

    April 7, 2015 at 6:55 am
    • Reply suzlyfe

      Thanks Michele, and right back at you–for so long you didn’t know what was going on. It is so crazy that they now are diagnosing children that are weeks old with these diseases. But, and I say this as a vast generalization, it is a bit like never knowing what chocolate tastes like because you are allergic. But when they know differently, or they realize that it isn’t “normal,” oh it just breaks my heart–it is so hard to explain that to a child.

      April 7, 2015 at 4:49 pm
  • Reply Sara @ Lake Shore Runner

    You are so string Susie! And helping so many people by sharing your story and being so upfront. So happy to be able to call you a friend.
    Sara @ Lake Shore Runner recently posted…Tried it Tuesday: Pinterest Recipes & Decoration [Stock the Bar Couples Shower]My Profile

    April 7, 2015 at 7:15 am
    • Reply suzlyfe

      Love you girl <3

      April 7, 2015 at 4:46 pm
  • Reply Gretchen | Gretchruns

    I can’t believe how much you’ve had to deal with, and you still have such a positive outlook and have done so many amazing things! You’re such an inspiration to me πŸ™‚ Thanks for sharing this story and journey with us. As someone who doesn’t know much about the disease, this was very informative. Looking forward to reading the rest of the series!
    Gretchen | Gretchruns recently posted…Six Tips: Training + Time ManagementMy Profile

    April 7, 2015 at 7:30 am
    • Reply suzlyfe

      Aw, thank you Gretch. I always say that we all have our fights to fight–this is mine, and I wouldn’t wish it on anyone else!

      April 7, 2015 at 4:46 pm
  • Reply Sarah

    Very brave to share this. Thanks for helping us to understand a little better. I have an athlete with Crohn’s and sometimes she sends me what seem like the most bizarre text messages. It is helpful to read this and understand a little better.
    Sarah recently posted…Ole! It’s Queso Fundido Time!My Profile

    April 7, 2015 at 7:31 am
    • Reply suzlyfe

      And please email me if you have any questions–there are somethings that are hard to translate for sure!

      April 7, 2015 at 4:45 pm
  • Reply Danielle@T-Rex Runner

    I know what you mean about being determined not to be a victim. I feel like that a lot with my back and sometimes it’s a good thing and sometimes it’s not. I’m definitely not the type to lie around and let my back control my life and never take chances or try anything new, but I also sometimes push myself too hard because I’m SO determined not to make excuses. I know you can relate. Great post!
    Danielle@T-Rex Runner recently posted…Training Week 11: Or NotMy Profile

    April 7, 2015 at 7:32 am
    • Reply suzlyfe

      Thanks Danielle. I know you know all too well what it is like to live with chronic pain that is seems no one has the answer for. Or to hear “just be patient.” We are so alike in pushing ourselves too far because we don’t want to hear it–and often we learn the hard way, as long as we learn!

      April 7, 2015 at 4:45 pm
  • Reply Sam @ PancakeWarriors

    It so crazy to read how strong you were then, how much of your character now was built then. You are such a bad ass unicorn Suz.- thanks for sharing your story – I have a close friend with Chrone’s and his meds quit being effective last year – it was really tough to watch as they played around with new medications. I can only imagine how you looked those first years – so glad your doctor recognized it and you were able to start to get some relief. Hope you have a beautiful day my friend!
    Sam @ PancakeWarriors recently posted…Veggie Burgers: Spring EditionMy Profile

    April 7, 2015 at 7:35 am
    • Reply suzlyfe

      It is terrifying when you think that you finally have it figured out and then things fall apart. Absolutely terrifying. Like, what did I do wrong? And then, where do I go from here? Never mind doing it to yourself–like we will when I try to get pregnant–>It is part of the reason that I wrote the post “what this marathon means to me.” I am finding the strength to push through again.

      April 7, 2015 at 4:44 pm
  • Reply Jerusha @CitrusSwirl.com

    First off, you’re a rockstar and my hero.

    Secondly, I was just diagnosed with UC about a month ago and have been in an active flare-up since November 4th, 2014 (or the Tuesday before my 3rd half marathon in case you think it’s INSANE I remember the exact date). After ending up in the ER in February due to the pain and other symptoms, then being discharged with the diagnosis “experiencing menstrual pain; avoid gluten and call PCP” and being told it was impossible to have the type I was having in my intestines (“you can cut them in half and you won’t feel it because there are no nerves in the intestines unless they’re distended”), I felt completely alone and, frankly, like a lunatic. I fought for a referral to GI and finally got my diagnosis at the start of March, but it was almost two weeks of active symptoms, no meds, and misery. Now I’m on Prednisone which is awful, Lialda, and doing iron studies and workups to help me bounce back from the severe anemia in the hopes that I can finally qualify for doing the Remicade (iron deficient anemia means I can’t take it).

    When I was diagnosed, the first thing I did was go online to find information from people “in the trenches” as it were… Almost nothing. I get why, because it is hard to talk about, but it makes the whole process so lonely and confusing. When people like you start talking about it, it fills such a void in what is a very lonely and isolating invisible illness. I hope to be able to dive into talking about what it’s like and how I cope, but I admit I’m totally nervous to share as you have. People like you inspire me that this is something one can function with and there is more benefit to putting it out there and sharing than pretending it doesn’t exist or it isn’t a reality for you and millions of others.

    Thank you for this!
    Jerusha @CitrusSwirl.com recently posted…Yo-Got This- My Awkwardly Awesome First Yoga ClassMy Profile

    April 7, 2015 at 7:45 am
    • Reply suzlyfe

      Oh, Jerusha. Thank you so much for saying something–and thank you as well for letting me know that there is still such a disconnect, a lack of accessibility, to people telling their story. Have you looked into CCFA Team Challenge? Or Advocates? They are incredible. I am so happy that you fought to be heard–so many just accept what they are handed. But you are fighting, and that is everything.
      I hope you continue to follow along–and I urge you to check out some of the other posts–you CAN live. You don’t have to just survive. It isn’t easy, but if it was, wouldn’t everyone do it? Chin up–email me if you need anything, or just to talk.

      April 7, 2015 at 4:41 pm
  • Reply Sara @ lifebetweenthemiles

    I’m sitting in my office crying while reading this. I am so happy that drugs like Remicade are around to help you Susie. I had a friends with Crohns in high school and it was terrible to watch her go through bad spells. You are SO strong and I love you, thank you for sharing your story. You truly are amazing, inside and out!

    April 7, 2015 at 7:48 am
    • Reply suzlyfe

      Love you right back, Sara. I can’t imagine living with this disease before Remicade. Life would be unrecognizable.

      April 7, 2015 at 4:34 pm
  • Reply GiGi Eats

    You + Me on same page! Posted P3 of my story today πŸ˜‰

    And night sweats = DEFINITELY A WORK OUT. Just sayin’ lol!
    GiGi Eats recently posted…Once Upon A Time… I Had A Large Intestine: Part 3My Profile

    April 7, 2015 at 7:54 am
    • Reply suzlyfe

      Do they give medals for it?

      April 7, 2015 at 4:34 pm
  • Reply Rae

    I can’t imagine having a chronic disease like this. I’m sure I’d be whiney and angry a lot. Thank you for sharing. I had a boyfriend a while back who had Crohn’s, but he didn’t like to talk about it, and now I’m like, wow, I had no idea what he could have gone through if he’d had a flare up. *BIG HUGS*
    Rae recently posted…Manic Monday – 04/06/15My Profile

    April 7, 2015 at 8:08 am
    • Reply suzlyfe

      Don’t discount yourself–you deal with plenty on a daily basis, and aren’t whiney! I feel sad when I hear that people shut themselves off after diagnosis. Pain changes people–pure and simple.

      April 7, 2015 at 4:33 pm
  • Reply Pragati // Simple Medicine

    I love that you’re sharing this with all of us. The disease looks different for everyone I’ve known with Crohn’s and hearing your perspective is definitely enlightening.

    April 7, 2015 at 8:22 am
    • Reply suzlyfe

      Thanks, Pri. It really is an incredible personal, individual disease. No two cases are alike–which is what makes it so difficult to treat.

      April 7, 2015 at 4:32 pm
  • Reply Julie @ Running in a Skirt

    Thanks for sharing this story.
    It seems like the greatest strength comes out of the worst struggles.
    I’m so glad you have had wonderful Mom and later the support of Alex through this.
    Julie @ Running in a Skirt recently posted…Pistachio Crusted SalmonMy Profile

    April 7, 2015 at 8:28 am
    • Reply suzlyfe

      I definitely agree–that is why I don’t begrudge having it–it makes me who I am, but it isn’t who I am.

      April 7, 2015 at 4:32 pm
  • Reply Anna @PipersRun

    My goodness you’ve been through a lot! It must have been just a nightmare at times. I don’t have a first hand experience with Crohns, only knowing a handful of people who have it. Thanks for sharing and glad you have such great support with your Mom/Alex.
    Anna @PipersRun recently posted…April 5k by the 5th & Weekly WorkoutsMy Profile

    April 7, 2015 at 8:30 am
    • Reply suzlyfe

      I don’t know what I would do without them–they have kept me going throughout the whole time–sometimes just by looking at them.

      April 7, 2015 at 4:31 pm
  • Reply Suzy

    YES. I have been dying to have a peak at the adversity you’ve been through because anyone who is so strong and funny and caring always has a story. You know, the whole teenage phase would be so difficult. Dealing with huge shit like this is traumatic at any point in life but when it happens during our teen years, its effects are magnified far-reaching. But you’ve got this killer strength from yourself and your amazing mama to turn it all around, and make it positive. Can’t wait to read the rest of your story. XO
    Suzy recently posted…When the Heart FartsMy Profile

    April 7, 2015 at 8:55 am
    • Reply suzlyfe

      I don’t think I fully appreciated how much it affected me as a teenager until much later. It just amplified so much, and then isolated. At that time, people didn’t know what to say or do, and I didn’t know how to talk about it yet. I couldn’t even comprehend myself what was going on at times.

      April 7, 2015 at 4:30 pm
  • Reply Mar @ Mar on the Run

    I love that you shared this… sending so many hugs to you! You are such a strong person inside and out!!
    Mar @ Mar on the Run recently posted…A Runner’s Book Review: Meb for MortalsMy Profile

    April 7, 2015 at 9:07 am
    • Reply suzlyfe

      Thanks Mar! I get my strength from many–but the support is invaluable.

      April 7, 2015 at 4:29 pm
  • Reply Run Colby Run

    Hmmm. I thought I hit reply, but my comment disappeared into the Blogging abyss. Gah. I’ll try again. I have to admit, I teared up reading about the bond you have with your mother. I can not imagine what it is like living with a chronic disease. I can’t Suze. You have put a beautiful, strong face on it. I am not all that familiar with Crohn’s. I am with ulcerative colitis. My ex had it- quite severely. He had surgery that saved his life. And would from time to time have “pouchitis” which would make him quite sick. He was never “normal” (Well. I knew that. That’s why he’s an ex. πŸ˜‰ ) Without a true colon, I’m not certain you can be “normal” just normal for him. I do have a question for you— With Crohn’s, how often do you have flare ups?
    Run Colby Run recently posted…Pure Joy.Β My Profile

    April 7, 2015 at 9:09 am
    • Reply suzlyfe

      Good question, and one that I will be sure to address. And let’s be real, none of us are normal, he just carries a special purse, lol. Mine would be Coach, I think.

      April 7, 2015 at 4:28 pm
  • Reply Erin @ Erin's Inside Job

    I can’t even imagine. So glad you got through it and can share with others! I thought having emergency trips to the woods while running was bad. Well, it is, but certainly not to that level. Way to go lady–looking forward to reading more πŸ™‚
    Erin @ Erin’s Inside Job recently posted…Daily Serving ReviewMy Profile

    April 7, 2015 at 9:09 am
    • Reply suzlyfe

      We both have had our battles–and they both come from within us. I think that is why we understand each other so well. <3

      April 7, 2015 at 4:26 pm
  • Reply Erica @ erica finds

    You are one tough cookie. Thanks for sharing your story so honestly. I am glad to have a chance to be a long for the ride as you kick ass and take names!
    Erica @ erica finds recently posted…Tried It Tuesday: Soupology (Soup Cleanse)My Profile

    April 7, 2015 at 9:27 am
    • Reply suzlyfe

      And I am glad that you are there to ride shotgun! Sometimes I let you drive, sometimes I do πŸ˜‰

      April 7, 2015 at 4:24 pm
  • Reply Suzlyfe's mommy, Clare

    OK, finally you made ME cry.

    Those first 18 months were just flat out hell–for all of us. You were so sick and we couldn’t fix it. I was your go-to person, so your dad gave me as much support as possible and your brother just stepped up and did whatever he could without saying a word. I lived on the phone with your doctor’s nurse who knew what questions to ask me and could always, always—-get you in to see her—-that day. I’d call Heather from the parking lot at school and she’d say, “why don’t you bring Susie in, in about an hour.” I have no idea how she rearranged Dr. S’s schedule, but she did, and they would check you right in as soon as we walked through the door.
    Do you remember the time the nurse triaged you from behind the desk and we had people jumping over the desk and running through doors to get you? That was a tad scary…….!

    How long is a flare? what an excellent question–you had one that lasted about a year, but you’ve never been symptom free, so I’d say you have FLARES and you have flares.
    I love that picture of Brian. He was truly your “knight in a white-horse” costume. When you come home this weekend, he will be so excited to see you. At 26, he is looking a tad shaggy, but a white horse living in Georgia is going to look a bit shaggy, especially one who rolls in the mud on an hourly basis!
    Your 8th grade year was horrid, but your grades were excellent, you and Brian were Equitation Champions for the year, and we all somehow survived it. You decided what your priorities were and we all worked together to help you acheive them. There were people who rheamed (sp?) me out for letting you go to school or “for making you go to school” but I didn’t make you do anything–you wanted to go, to be as normal as possible and to live every day. There were many days when I knew how bad you felt, so I just sat in the parking lot at school, in case you needed me. Every wonder why I had so many People magazines in the car!!
    We built a support system but it took time to cobble together the team we’d need. In the beginning years, we didn’t have Alex, so we just did the best we could before he joined us.
    When I say “we” I mean that. You were never in this alone, then, now or ever. We may not all be physically present but WE are allways there for you. Crohns is a nightmare, but it is our nightmare!

    Mommy

    April 7, 2015 at 9:56 am
    • Reply suzlyfe

      It definitely was a we–I knew that you felt every pain, every sweat, every time I was scared, and also when I started to feel better. But you also always carried the anxiety that I at sometimes tried to ignore.
      I will never be able to say thank you or I love you enough. But you know how much I feel it. Every day.

      April 7, 2015 at 4:26 pm
      • Reply Suzlyfe's mommy, Clare

        Thinking about that first summer, picking you up at the airport that night at midnight, trying to call Childrens’ Healthcare on my cellphone while driving through Alpharetta when you told me you couldn’t breathe——it makes my skin crawl and it hurts to remember that summer.
        But, Pollyanna-mom or not, that summer taught us all to appreciate waking up in the morning, because it meant we had a new day that might not be so bad. Having Brian gave you a reason to get out of bed, and that was a start…… to a new day that might be better. He made us laugh (and still does) and THAT was reason enough to get out of the bed!.
        Some nights, we both slept on your bathroom floor because you were too weak to stand up by yourself. There were nights when I slept in your extra bed, and you woke me up crying in your sleep. There was pain and the always unknown fear that Elton Johns’ Tiny Dancer (your ringtone) would bring a quiet “Mom, I don’t feel good.”
        But there was something else that that summer brought–it gave us an unbreakable bond. An unbreakable love and trust in each other. Girls at thirteen usually do not want their moms anywhere near them…….we did it differently, didn’t we?
        This is when some of your readers might see the other side of the living with a chronic illness–the first 18 months were and are the hardest. The learning curve is very steep and scary, but because it is your life, you learn to live with it and you learn to live it.
        After the biopsy, when Dr. S came in to tell me that you did have Crohns, she told me that my new favorite word was going to be “flexible.” Yeah, right!….but a straw that is flexible doesn’t break, it bends and then it straightens back out.

        Live every day of your life–its a great idea– lets do it –every day.

        April 7, 2015 at 5:35 pm
        • Reply suzlyfe

          They definitely are the toughest–that time before diagnosis, and right after while you are trying to get everything under control–is just a different experience than anything else.
          But you are so right–flexibility is the key to success with a chronic illness.

          April 8, 2015 at 8:11 am
  • Reply Shawna

    you are one tough, amazing chicky. thanks for sharing your story with us. <3
    Shawna recently posted…2 Things Tuesday: Running & Sweat PinkMy Profile

    April 7, 2015 at 10:02 am
    • Reply suzlyfe

      Sure thing. I just hope that it helps someone out there.

      April 7, 2015 at 4:24 pm
  • Reply Laura @ This Runner's Recipes

    You are one strong and resilient woman! Crohn’s is rough (it runs in my family) and I can’t imagine how hard it was for you to go through it during middle school, which are hard years no matter what. Sending you hugs from my side of Lake Michigan to yours! And what a sage piece of advice for any of us with some ongoing condition (I have endometriosis & such): someone always has it worse. Staying mentally strong is half the battle, and it’s so remarkable that you did that as a preteen and teenager!

    On a more cheerful note, the picture of someone lunging in the ring that said “no lunging” cracked me up. I’m going to send that to my sister (who competes in saddleseat).
    Laura @ This Runner’s Recipes recently posted…My Goals for St. Louis Go! Half MarathonMy Profile

    April 7, 2015 at 10:43 am
    • Reply suzlyfe

      YES I love that you got that pic too! It makes me die laughing.
      Do you have any IBS or IBD yourself? One of my best friends has severe endometriosis, and I have the precursors for it–if you ever need someone to listen, I’m here.

      April 7, 2015 at 4:23 pm
      • Reply Laura @ This Runner's Recipes

        I fortunately don’t have IBD or IBS myself yet- my endo is connected to having lean PCOS (so not fun but thank goodness that the right medication can control it). That stinks to hear you have the precursors for it πŸ™ I’m definitely here if you ever need someone to listen also.
        Laura @ This Runner’s Recipes recently posted…My Goals for St. Louis Go! Half MarathonMy Profile

        April 7, 2015 at 4:48 pm
  • Reply meredith @ The Cookie ChRUNicles

    You know you had me at imagining the worst menstrual cramps ever plus the other symptoms on top of that. Ugh! Such an awful thing to have to go through and live with. I read Carrots n Cake so I see she deals with it too and the remicade.
    meredith @ The Cookie ChRUNicles recently posted…Allergic to Strawberries & Muffin RecipeMy Profile

    April 7, 2015 at 11:02 am
    • Reply suzlyfe

      Tina’s disease is slightly different than mine, but she and I have many similar experiences. It has been great to have her spreading the word!

      April 7, 2015 at 4:22 pm
  • Reply Lauren @ ihadabiglunch

    I can’t even imagine πŸ™ I know others have mentioned this, but I read Tina’s blog too (Carrots n Cake) and I just can’t imagine having that kind of pain come from your body. But i’m glad you’re taking the time to explain everything to us, just as it is, via your journey. You’re such a strong woman who has clearly been thru the ringer. It’s so wonderful that your mom was your rock during the hard times, especially because they started so young!
    Lauren @ ihadabiglunch recently posted…Back to regularly scheduled programmingMy Profile

    April 7, 2015 at 12:14 pm
    • Reply suzlyfe

      I seriously don’t know what I would do without her. I don’t know where I would be without her and Alex, and I never want to think about it!

      April 7, 2015 at 4:21 pm
  • Reply Jill

    Oh this made me really upset to read Suze :(. Especially Bc you were just a kid dealing with this. I hate to hear about sick kids. I thank you for being so brave and haring your story. I think going through that def shaped who you are as a person today. I think I told you I have a cousin with Crohns but he never shared as much detail about the disease. He was also really reslly sick before they figured out what was wrong with him. He subsisted for many years without Remicade as well and would have so many flares. I dk if I told you I actually have IBS? It’s something I don’t talk about on the blog but I went through many years as a kid being sick and going through tests to figure out what was wrong (so many misdiagnoses!) Nothing like what you went through but it def messed me up for awhile. I’m so glad you’re healthier and happier now.
    Jill recently posted…Fight Through the Headwind, Savor the TailwindMy Profile

    April 7, 2015 at 1:19 pm
    • Reply suzlyfe

      Thanks, love. I think I am going to do an informative post about what the differences are between the diseases–I hope that will spell it out better.

      April 7, 2015 at 4:20 pm
  • Reply Courtney @ Running For Cupcakes

    Thank you for sharing Suz. I already knew how strong and amazing you are, but this makes it really real. I can’t even imagine what you went through, and for you to be as positive as you are now is amazing.

    April 7, 2015 at 3:04 pm
    • Reply suzlyfe

      Thanks, C. It has been a journey, but I still feel very fortunate to take it.

      April 7, 2015 at 4:20 pm
  • Reply Jamaica King | rarax3.com

    Glad you’re in a better place now. Wishing you the best every day.

    <3 Jamaica
    http://rarax3.com
    Jamaica King | rarax3.com recently posted…Tuesday Tunes: Link UpMy Profile

    April 7, 2015 at 3:15 pm
    • Reply suzlyfe

      Thanks, Jamaica. I am too. As I’ll talk about, my disease isn’t linear, but I am thankful for each day, and that is a gift.

      April 7, 2015 at 4:19 pm
  • Reply Ange @ Cowgirl Runs

    That picture gets me everytime πŸ™‚

    I see you as such a strong and inspiring person, and someone who doesn’t let her disease define her. It’s apart of you just like your hair colour or your eyes, but that’s it. It exists and you co-exist together.
    Ange @ Cowgirl Runs recently posted…Four EyesMy Profile

    April 7, 2015 at 4:10 pm
    • Reply suzlyfe

      I like to say it is the fine print–but never what is in bold. And that picture gets me, too–I saw it and just decided it needed to be there!

      April 7, 2015 at 4:18 pm
  • Reply carissajade

    Thanks so much for sharing this Suzie. I know I don’t know you well (yet) but I can already tell how honest and brave you are, and I love that. I also love that horses played such a role in keeping you going. I know how difficult this disease can be, and major kudos to you for keeping such a positive outlook. There are days when I want to throw the towel in over some period cramps. I’ll definitely think twice the next time I’m feeling sorry for myself. Keep sharing your story. Everyone needs more role models and stories of inspiration on their radar!
    carissajade recently posted…Weekend Snapshots – Easter 2015My Profile

    April 7, 2015 at 4:19 pm
    • Reply suzlyfe

      Thank you for reading, Carissa, and for your kind words! I think that we can help inspire each other–sometimes to stay humble, sometimes to life each other up, sometimes just to think about anything else. I am just happy to be in a place where I can share, and can show a positive side to it.

      April 7, 2015 at 5:00 pm
  • Reply Farrah

    So glad that you had a pediatrician who knew what was going on. I have a tendency to bury myself in work (aka school + my hobbies) to get through tough times as well

    I’m so glad that you found things that worked for you, and you are incredibly strong + a super badass! <3 I feel ya on not wanting to play the victim.

    …And horses. <3 <3 I miss getting to hang out with em' so, so much!

    Thank you for sharing this! (If I do a Medical Mondays on Crohn's, I'm gonna have to link back to this if you don't mind! <3 ) Looking forward to reading your next installment!
    Farrah recently posted…Ultimate Fitness GetawayMy Profile

    April 7, 2015 at 4:25 pm
    • Reply suzlyfe

      Please do! And I was so, so very lucky. I’ve met many who lived with it for years and just had their symptoms semi treated. Terrible.

      April 7, 2015 at 4:58 pm
  • Reply Kaella (KaellaOnTheRun)

    THANK YOU FOR SHARING! Ugh… I got goosebumps just reading the word “Ensure” and all those pills—yep, been there! YUCK! I don’t know you that well but I feel like I’m getting to know you better through your blog. You are so strong and brave. I look forward to reading the rest!!
    Kaella (KaellaOnTheRun) recently posted…Training Tuesday- Running Through InjuryMy Profile

    April 7, 2015 at 4:48 pm
    • Reply suzlyfe

      We both are so strong and brave. And you don’t know how much hope it gives me that you have London–so much hope!

      April 7, 2015 at 4:57 pm
  • Reply Jess @hellotofit

    You amaze me more and more with your stories!! I am in awe of how strong you are, and how unwilling you are to let something like this dictate your life. Thanks for sharing!! XOXO
    Jess @hellotofit recently posted…Link Love #12 and a happy EasterMy Profile

    April 7, 2015 at 5:43 pm
    • Reply suzlyfe

      Thanks Jess. That is so sweet of you!!

      April 8, 2015 at 8:11 am
  • Reply Debbie Bridges

    I didn’t realize how young you were when you were diagnosed…I was 20 when I was diagnosed just finished my sophomore year of college. Crohns is such a difficult disease not only for those of us who have the disease but for those who live with us. It’s hard for someone to understand how sick I am on the inside when I don’t look it on the outside. I also have a great support system my parents and siblings, most significantly my brother. Now it is my husband and daughter who stand beside me. They have seen me at my worst, 2 surgeries and numerous “didn’t quite make it in time” mishaps.
    I told myself about a million times, I have Crohns disease but it doesn’t have me. It has tried to knock me down several times but I get up and dust myself off.
    I hate that these disease has altered my life…I don’t socialize much because I never know when the monster will start rattling the cage. As a result of this I don’t really have close friends. I have a lot of wonderful aquaintances in my life and many people who support me but that’s about it.
    Like you I miss so many foods.. Dairy, fruits with skin, leafy ruffage vegetables and pizza!
    I know there are far worse diseases out there but this is the one I was dealt to live with.
    Before I go to sleep every night I thank god for 3 things I was grateful for that day, someday I hope to be able to say I am grateful for a cure. Until then I will fight the good fight and live my life to the fullest I can.

    April 7, 2015 at 9:31 pm
    • Reply suzlyfe

      I remember you saying that you always keep your 3 things you are grateful for in mind as you go to bed, and I think that is a beautiful exercise–for us all–for those with chronic illnesses, especially pain. Pain changes people, and it is the hardest to fight over the long haul.
      I definitely want to address the “I may not look it, but I feel it” phenomenon–it truly is incredible how our bodies can hide what is going on.
      I hate that your life has changed as a result of this disease, too. But I also am so beyond belief proud of you for the accomplishments that you have achieved in the face of all of the adversity that this disease has thrown at you. When I think of strength, I think of you–especially when you have been doing this with your husband and daughter in and out of the house.
      And one day, I hope that we are both able to say that we are grateful for a cure. That would be the greatest gift I could ever give.

      April 8, 2015 at 8:19 am
  • Reply neil@neilshealthymeals.com

    Like I’ve said before on your blog, and I’ll repeat again, I read people’s personal life stories, their battles and triumphs and I am inspired. And I am in awe of yours. Battle on my friend. Onwards and upwards, the sky is the limit!! πŸ™‚

    Have to admit I knew very little about Crohns Disease before I started following you, so you’ve been an education to me. Well that and all your craziness too. πŸ˜‰
    neil@neilshealthymeals.com recently posted…Baked Salmon PestoMy Profile

    April 7, 2015 at 11:22 pm
    • Reply suzlyfe

      teee hee. I’m proud to be so educational on so many levels. Crohn’s is (unfortunately) becoming an increasing familiar word and condition, particularly here in the US. We have the lifestyle and diet that provokes these types of reactions. I wish I didn’t feel the need to let others know about it–that it was such a small problem that there was no reason. But until then, I am happy to tell my story.

      April 8, 2015 at 8:13 am
  • Reply Bri

    Thank you for sharing your story Susie… I have a friend with Crohn’s and have no idea what she’s going through (she doesn’t share it with anyone) so I’m looking forward to reading the rest of your story. I love how even though you’re living with this disease, you do not let it define who you are. You are one inspiring and amazing lady πŸ™‚
    Bri recently posted…The surprise secret to motivation and consistency when it comes to eating right and exercisingMy Profile

    April 8, 2015 at 6:55 am
    • Reply suzlyfe

      Thanks Bri. I would encourage you to encourage your friend to share at least a part of her battles with you–if for no other reason than that she will feel more empowered in her own fight as well as to step forward when she needs the help!

      April 8, 2015 at 8:14 am
  • Reply Gianna @ Run, Lift, Repeat

    Thank you so much for sharing your story – you are truly a strong amazing woman. It’s people like you willing to share that help people like me, newly diagnosed learn that there is hope! I cannot imagine being diagnosed at such an early age…heartbreaking to go through it that young, the strength that must have taken, inspirational!
    Gianna @ Run, Lift, Repeat recently posted…Me vs. Crohn’s: I think I am Finally WinningMy Profile

    April 8, 2015 at 11:46 am
    • Reply suzlyfe

      Ah, thank you so much Gianna. I just want to help people see that there is a bright side to all this. We just have to fight for it.

      April 13, 2015 at 8:36 am
  • Reply Nicole@Thegirlwhoraneverywhere

    you are incredible and SO strong. I can’t wait to read part 2 of your journey. I admire your maturity level at sucha young age…I don’t think I was anywhere close to that level! πŸ™‚

    April 9, 2015 at 6:55 am
    • Reply suzlyfe

      love you boo

      April 13, 2015 at 8:35 am
  • Reply Friday Five (s) : Runner Favorites and Confessions - Suzlyfe

    […] Living with Crohn’s Disease Part 1: Early On […]

    April 10, 2015 at 5:39 am
  • Reply What is Crohn's Disease? (Living with Crohn's Pt 2) - Suzlyfe

    […] Living with Crohn’s Disease Part 1: Early On […]

    April 14, 2015 at 5:22 am
  • Reply Crohn's Disease - fairyburger

    […] For a personal account from a super badass living and kickin’ butt with Crohn’s, check out one of my favorite bloggers–Susie @ SuzLyfe! […]

    May 17, 2015 at 10:01 pm
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