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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. 



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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