We are laughing! I probably made a Crohn's joke. That's my style.

I Want To Know What It's Like

Date: July 11, 2012 at 9:11 am- by Ali- Comment(s): 43

I want to wake up in the morning, and I want to just run.

Perfect morning = I want to actually enjoy it.

I don’t want to spend an hour in the bathroom first.

I don’t want to plan my route based on where I can find an open public restroom at 5:30 AM.

I want to read my training plan and know I can tackle the workout because my stomach isn’t going to hold me back.

I want to know what it’s like to feel “normal.”

I’m tired of being “the girl with Crohn’s.”

I’m tired of having to clarify that “I ran 7 miles, but had to make 7 bathroom stops.”

That’s precisely what happened yesterday. The number of stops I made was equivalent to the number of miles I ran.

I knew something was off on July 4th when I went running in New Jersey with Sofia and Nicole. Yes it was hot, but I felt drastically worse than normal, and I ditched them after two miles so I could go to the bathroom.

Then, this weekend, there was that tell-tale sign that Crohn’s was here again.

(By tell-tale sign I mean blood where you never want there to be blood.)

Since then, I’ve spent far too much time in the bathroom. The first thing I did at Brian’s race Sunday was scope out the bathroom situation.

I spy: Two Porta Potties! Yay! There were also much nicer indoor bathrooms, which I frequented. The best thing about bike races is that there are rarely lines for the ladies' room. Also, there are good-looking men on bikes. (I only have eyes for you, Brian, duh. What other men?)

During my bike ride Monday morning I actually had to stop and carry my bike into the bathroom with me. Do you know how awkward that is to maneuver? I was certainly not graceful and I don’t understand why “real bikes” don’t have kickstands. That would’ve been really helpful at the time.

I’ve been in a constant state of discomfort for a week now — just in time to start marathon training.

Perfect, right?

It’s my third flare-up of the year: I had one in March, another in May, just in time for my best friend’s wedding…

We are laughing! I probably made a Crohn's joke. That's my style.

…and now this one, which thankfully has been the calmest of the bunch because I haven’t had the night sweats. My fever did climb into the 100s yesterday, but I’m not too concerned.

I can’t complain though, and I don’t expect sympathy.

I didn’t really do anything to prevent this flare-up.

Yes, I’ve been eating pretty well (most of the time — I do my best, but I’m still a proud #fatfluential ringleader some days), and I haven’t been drinking. I’ve been exercising, but haven’t been doing any excessive or potentially body-damaging workouts (like, I don’t know, breaking wood planks with my forehead or working on my gymnastics moves).

I started taking probiotics and flax seed oil pills…yesterday.

The Flax Seed ones smell disgusting. But Brian said, "Just take it." So I did.

And I haven’t gotten a new doctor yet.

I know.

I know.

I’ve done research. I’ve bookmarked bios from doctors I found online, and I’ve even made a few calls to check and see if places take my insurance. I’ve received tons of recommendations, and I’ve saved them all.

But I haven’t committed to a new doctor. I haven’t had a colonoscopy since 2009, and while I’ve gotten into juicing and other food-related things I thought would help, I haven’t stuck with any of it.

I can’t say I did much to ward off this latest flare. I keep saying I’m going to get a new doctor, but as soon as I say that, I start feeling better, so I continue putting it off. When I feel good, I don’t want to think about Crohn’s, let alone go see a doctor and talk about it and get a bunch of tests.

My parents always told me I needed to find a doctor while I was healthy, that way he/she would be there for me when I got sick.

Mom, Dad, I swear my goal in life is not to let you down. How pissed are you guys that you’re finding out about my sickness on a blog?

Oops.

Would a Tyler photo make you un-mad at me, parents?

NO ONE IS BETTER THAN YOU, TYLER. And OMG I love your outfit.

I am doing a little something, though: I’m sitting in the Remicade chair right now, getting pumped full of anti-inflammatory goodness. I’m hoping that does the trick and kicks this flare out of my system. But I know that’s only a quick fix, and I need a long-term solution. The Remicade helps temporarily, but it’s obviously not enough to keep me in remission for longer than two months at a time.

My nurse is named Jeanna and I love her, even though she just looked at me and said, "Baby, you look tired."

I’m not complaining. I promise. In fact, I didn’t even want to write about this little health issue because I was hoping it would come and go quickly enough that I could ignore it.

I’m trying to remain optimistic even though this disease has been completely debilitating the past few days. I hate emailing my boss and saying I’m not going to make it to the office. She’s really understanding, but I feel so weak and pathetic doing this all the time.

I went for my first marathon-training-specific run yesterday, and it was terrible. It was one of my worst runs of all time. That frustrated the heck out of me, because when I was actually running, I felt great! My paces were spot-on, and it was encouraging. Then, out of nowhere, I’d have to come to a complete, sudden stop and my face would turn bright-red (on top of the redness it already had from the sweating, of course) and I’d shuffle my way to that wonderful tennis court bathroom.

Seven times.

I stopped there seven times.

So as perfect as those splits were, do they even count if they were completely broken up? I don’t know.

The workout was a 1-mile warm-up, three laps of the Reservoir at marathon goal pace (8:45–8:50 is what we’re going with for now) and a 1-mile cool-down.

Love that cool-down mile, also known as "If I don't get to my apartment in the next 12 seconds I might actually die." It was a sweet power walking effort home.

My total running time was 1:04.

But door-to-door, the workout took more than an hour and a half. That’s a lot of bathroom time.

Now you know what’s up. I really do have a feeling this is a mini-flare and it’s going to pass really quickly. Also, after having more flare-ups in the past year than I had in the previous five years, I think it’s time to stop being a little brat and actually get a doctor. No more excuses, right? I have pretty much done every single other task on my To-Do List — including clipping my nails and finally unpacking another moving box — except getting a doctor.

This is me, not complaining. Just acknowledging what’s up and wanting to feel normal.

Since this is the lamest post ever, here is something fantastic that my coworker sent me:

Does she know me well or what?

If only that were written in ALL CAPS.

So that’s the deal. Any questions?

43 Responses to "I Want To Know What It's Like"

Tyler is getting cuter by the day! Getting that many miles in is an accomplishment even if it took a while. :)

GO TO DOCTOR. Even if you feel OK, you know this can happen again at any time and a good doctor might be able to actually help you so you don’t have to stop seven times during a run.

AliOnTheRun says: July 11, 2012 at 9:24 am

I honestly wrote this and knew you were going to give me a lecture. I KNOW. This whole post was me saying I KNOW.

Haha. I mean, I haven’t actually been to a doctor for my stomach since 2009.

in my book, even if you stop, those splits count. you could have sat at home, so kudos to you for getting out there!

Oh Ali, I hope you feel better soon and find yourself a doctor. I really need to cut back on my exclamation points, but that ecard makes me feel better about it.

Gosh Ali, I’m so sorry you are struggling with a Crohn’s flare-up. Hopefully this is a mini-flare as you mentioned and you are feeling great again soon!

I know what will make you feel better..a random comment about a dream I had last night.

So, I was attending some blogger conference thing, but it was in a dark, kinda dingy city – like dystopian, Hunger-games style. Anywho, the conference was in a nice hotel, and you were my roommate. We had this GIGANTIC hotel room with two king beds, and I woke up in the middle of the night and walked outside to the 7-11.

At the 7-11, it was 7/11 (today!) so I could get a free slurpee. Randomly, the 7-11 wasn’t open yet, so I had to wait until some certain time, in which the employees unlocked the doors and I ran to the slurpee machines, that had dozens of weird flavors (like sesame, milk and black bean).

While I was getting my slurpee, I leaned over to get a lid and my iPod nano fell out of my purse. As I went to pick it up, I noticed there were 5-6 iPods on the ground, all different models/generations. I picked them all up and started shouting, asking if people dropped their iPods, but no one answered!

I went back to the hotel room and fell asleep. Apparently, I slept in and I woke up with a knock at the door. I walked over and you were there, asking me what was going on, then you saw all the iPods scattered on my bed and the slurpee on the nightstand and were like, “what the heck?”

Weirdest dream!

AliOnTheRun says: July 11, 2012 at 9:45 am

Oh my God. This is amazing. Hahahahaha. I love that I made a cameo in your not-weird-at-all dream. Totally amazing.

Go see the doctor. It’ll be fun. Then feel better soon so I don’t have to worry about my best pace days equaling your power walks ;) [or, don't feel better and I'll come sprint along side you as you power walk and we can play the who is faster game]

Go to the Doctor- At least find one… it will help, Make be you are stressing about not having a doctor and the guilt is adding to your flare up…. Call now and make an appointment.

You’ll be running in no time…

I hope that you feel better but really, really, as a runner, a mother and a healthcare provider, I asking that you please make seeing a doctor at the top of your priority list. You have to do it. While stress can indeed activate and exacerbate flares, my reading of the research is that it is not causal and certainly not singularly causal….so you really can’t treat this yourself and the remicade is not a long term answer, as you know. Make your next run/workout contingent on having a doctor’s appointment..

Do you want to know what it’s like to not have Chrons and be training for a distance race?

You may wake up in the morning, hit the snooze and miss the morning run. You don’t always have the fire or determination to appreciate the fact that non-chronsy people can roll out of the bed and run. You may get home from work, do your normal routine and promise yourself that you will run when it gets cooler out. Then, you don’t. Then, you feel like crap because you missed out on the opportunity to be present in the moment, to stick with your goals and appreciate the ability to run.

I don’t understand Chrons but I do appreciate your stories. It makes me have a greater appreciation for the fact that I can run rather than treating it as a chore.

I hope you get better and that you continue to have such a positive outlook

Oh boy, you told your parents through your blog that you’re not feeling well? That may not go so well, even with the cute picture of Tyler.
Don’t worry about the running too much now. You have a really good base and training just started. The important thing is to get yourself a new doctor. If you take a quarter of the time and energy that you put into your running schedule to actually finding a doctor who can (we hope) help you get a better handle on the Crohn’s disease, then you’ll have all that time and energy that you would otherwise use in looking for bathrooms during your runs to actually run.
No more “feel better” comments. It’s tough love time.
You know we only push you because we love you.
:)

I just started reading your blog (found it in Shape) and wanted to let you know that I was having a flare day yesterday too and I opted to stay in bed and skip running and the gym. I stayed home and ate yogurt, french toast, oatmeal and grilled cheese (healthy, I know) Your miles absolutely count!! No matter how many times you stop. You could have opted to skip, like I did, but you are a lot tougher than I am. I also hate not being able to jump out of bed and run but if it makes you feel any better my husband can’t run in the morning because he will need a bathroom too and he doesn’t have IBD. I totally understand not wanting to get a new doctor too so do it when you feel ready and comfortable to meet a new one. I am looking forward to following your blog. Take care!

Ali! I know this is just echo the Greek choir here but you need to go to the doctor. The only step you got to do today is just make a call and book an appointment.- that’s it.

I want you to run the NYC Marathon and that may mean practicing self-care.

I know Crohns totally kicks ass as it runs in my family unfortunately. I am noticing some of the symptoms myself which kinda blows so I am going to follow my own advise and schedule a doctor visit myself (I am too shopping around for drs.)

Your run counts. Period.

I’m so sorry! Marathon training is tough but on top of it you have to deal with your stomach issues. You are one of the strongest runners I have ever met! Hope you will feel better soon!

Wow! Exactly how I feel every run, but can’t put it on paper. Thanks for sharing to let others understand that we are not alone AND to depict what it is “really” like living with this disease.

Get better, thinking of you and if you need any help/advise, or someone to talk to pleae email!

tn

Matthew says: July 11, 2012 at 1:13 pm

Hi Ali,

I just started reading your blog about a week to a week and a half ago. My sister found out about it in a running magazine or blog site. She thought I would be interested since I too have Crohns’ and for a while I was starting to get into running (story for another time perhaps.)

I’ve kept up on your last week and a half and even started reading old posts (starting at beginning of the 2010 archive) because reading about a runner with Crohn’s is very inspirational to me.

I decided to finally comment on one of your posts today because of your description of your current flare up. Part of what I wanted to say amounts to the ‘choir’ comments as well as your own =) which is to take time to find a good doctor for you. Why I add my voice is because I too was on Remicade for for 2 or 3 years and it worked great for a while until it started to work less. You may already know from your own research or maybe not, but I guess because of the way Remicade is made our bodies can develope antibody resistances to Remicade that eventually make it not effective anymore. It can be faster for some people and slower for others, I think I was right in the middle. I very much hope you are just having one of the ‘mini-flares’ that seem to happen even with our med’s and wish you to get through this one fast!

It has been nice to ‘meet’ you in this forum!

Matthew

Mental trick: Change “I want to know what it’s like…” to “I’ll call Dr. ______ to help me find out what it’s like…”

Easy for me to say, but I can sometimes overcome my own procrastination like that.

Feel better!

Here is a question. What is the best meal you have EVER eaten??? Like the best. (This is sorta related to your post… since you need a digestive system to eat… but totally not related to your post) Mine was seafood paella in Valparaiso Chile. Hands down. It was amazing.

Hey now, don’t be too hard on yourself – you can be doing everything right with this disease and it will STILL bite you in the ass. Because it’s a b-hole of a disease. Believe me I know how you feel, we probably live a weird parallel Crohn’s life – but don’t beat yourself up, please. It’s way too easy to think about all the things you could’ve/should’ve done differently and blame yourself for getting sick but the reality is that it’s not your fault…. Shit happens (sorry >_>). Keep doing what you’re doing and treat yourself right… and yes, get a new doctor! Doctors are no fun for sure but you do want to keep ontop of bloodwork/etc when flaring so they can treat it the best possible way.

Hope you feel better soon! Love your blog! <3

Ali, I found your blog about a month ago when I did a google search for Crohn’s and running. I have Crohn’s (I’m also in the Remicade club), I enjoy running, and I share your frustration with the disease’s impact on running. Even when I’m not in a flare, I plan my runs around bathroom access. And this is challenging because I hate the treadmill. I had a close call during yesterday’s run (close call as in had to sit on the side of the road and send friend to retrieve car while I seriously scouted out “private” spots in a wooded area just in case). Thank God for understanding running partners. Anyway I wanted to write to you to let you know your blog helps me feel less alone in this disease. Thank you for that. Also I wanted to write to you to tell you that you aren’t alone in this either, even though those bathroom stops can be pretty darn lonely and gross and annoying. Thank you so much for writing this blog – I’m a loyal reader and a big fan! p.s. I urge you to go to a GI doc. You might need Remicade infusions more frequently or a higher dose to control your disease, but that’s only something a GI doc specializing in IBD can tell you.

Ugh. I hope you find a way (doctor, magic food, fairy dust) to feel better soon. In the meantime, I thought you might like to know that the title of this post somehow got that “I WANNA KNOW WHAT LOVE IS! I WANT YOU TO SHOW ME!” song stuck in my head. Thanks for that.

Oh Alli, I’m sorry to hear that! Feel better! I understand having stomach issues and wanting to feel “normal”. I know you said you have a million recommendations, but if you need another one, let me know! Great job finishing your workout under tough circumstances! Btw, what is a remicade chair?

AliOnTheRun says: July 13, 2012 at 12:23 pm

Thanks, Dani! Remicade is a drug I get through an IV to help keep the Crohn’s at bay (though clearly I’m not currently convinced it works). So every 7–8 weeks I go to the hospital, sit in a big reclining chair (“The Remicade Chair”) for three hours and get my IV infusion.

Awww…I’m so sorry, sweets. Hang in there… this too shall pass. Eventually.
It’s free slurpee day at 7-11. I think that might help – can’t hurt anyways!! :)

Ugh… sorry to hear that! I was recently diagnosed with colitis and am close (fingers crossed) to getting my first flare into remission. I am doing all the right things now, but I worry that once I’m better I’ll start slacking. I do NOT want this to come back! I am sooo thankful that I have an amazing doctor who gives me free med samples (my insurance doesn’t cover any of the meds!), is reachable via email, calls the same day if I have a problem or question… she’s fantastic. I hope you find a good one of your own.

Aww feel better and I hope you find a good doctor! I need to stop being lazy and pick out a doctor too.

I hope this really is a mini flare-up, hope you feel better! You really need to put a post-it note on your head that says “Find new doctor today” and don’t remove it until you do. You need someone there for you that will help get you through a full marathon training cycle!

I’m so sorry you’re having such a rough time, it sounds awful and I’m so sorry for you!! Well done for continuing to run and to fight this and to be so brave. It has to get better.

I want to know what it’s like to be as positive as you are in the face of something so frustrating. You seriously rock ass. I mixed that metaphor just for you.

You’re lucky that you get to scope out which doctor you’re going to go to.In my city all the GI docs work out of one clinic, there’s 8 of them, you just get an appointment for “IBD clinic” but you never know which doctor you’re going to get. until he/she walks in the door.

Aww, bless your little, sweaty heart, Ali. I love your writing, honesty, and humor in shitty situations. Hang in there. I’m rooting for you from Oz! :)

Ali, I hope you start feeling better soon! I know how you feel with the Crohns getting in the way :( Hopefully it will be a super short flare & those flax seed pills will work some magic :]

Lady, I am so sorry. I get all of what you are saying, and I wish I had some magical answer …
Yay for Remicade and flax pills. I take those too along with b12, who knows if it works but the intention is good!
I also completely hate new doctors and searching for them. Another round of tests and awkward questions … I know how much it sucks. Your parents are really smart though, searching for a dr when healthy is a great idea.

Hey girl, haven’t been following your blog for that long, but I do admire your positivity in light of everything. One of my closest running buds has MS and so I see through her what it feels like to be sick but to wanna stick to your goals. So kudos for that! Keep your spirits up (& go see a doctor!) and I can’t wait to see how your training goes.

Step 1 to awesomeness: run. Step 2: have a blog. Step 3: take control of your body. You’re so close to completing the trifecta. Time to be a badass.

Meghan @ cleaneatsfastfeets says: July 12, 2012 at 10:01 pm

Chrons sucks @ss.

Ali, I hope you start feeling better! Please get to a doctor! Remicade is a fabulous medication (I was on it for 11 years and it just NOW stopped working. Now I started shooting myself up with some Humira), however it doesn’t work for everyone. If you are noticing your symptoms getting worse before your treatment is due, it’s not an adequate maintenance dose. You may need a higher milligram/kilogram dose or frequency increase. Remicade is made from mouse proteins and humans can build up antibodies to it, preventing the anti-inflammatory goodness from working to its potential.
What I started this year was acupuncture. And while I am a RN and don’t believe in ALL of the Eastern medicine (healthy eating= yes, massage=yes, certain herbs=no), this one really does work. My pain and Crohn’s complications started going away. Maybe think of adding it into your routine. They can help with muscle cramps and aches too. They have helped with my insomnia and arthritis as well. :-) Something to consider!

Katelin Atwater says: July 28, 2012 at 5:58 am

Oh wow. I really came across your blog at the perfect time. I have Chron’s as well, Ali. And I was in remission for two years. To the point where I could eat whatever I wanted.. and it was bliss. However, the past month and a half have been pretty bad. I run as well and my long runs are pathetic. 4-5 bathrooms stops (I’ve been using the same trail because there are port-a-pottys). I can absolutely relate to you, your situation, and the frustration you feel. It is so difficult to put into words to ‘normal’ people what it’s like. But, I am so pleased and relieved to have come across your blog even if it’s to know that I’m not alone. Hang in there. Thanks for your sharing your story with us!
-Katelin (Katelin.Atwater@gmail.com – feel free to vent/email me anytime)

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