Now What?

Date: November 14, 2016 at 6:31 pm- by Ali- Comment(s): 11

Thank you all so much for the incredibly kind and supportive comments about my decision to run the marathon. You make me so very happy. The internet has been an especially tough place lately, but this little corner of it [almost] always makes me feel better about things. So thank you for your love, your understanding, and your sweetness. I appreciate it tremendously. Now let’s talk about what comes next…

By some kind of miracle, I ran the New York City Marathon. Yay!

Beaney and me! The happiest run-walkers in all the marathon land!

Beaney and me! The happiest run-walkers in all the marathon land!

It didn’t go the way I planned and hoped for 17 weeks ago, but it went, and ultimately that’s all I wanted. It was a beautiful day, my stomach felt shockingly chill, and I cheesy-smiled every step of the way. Despite some shake-ups in the original plan, I got exactly what I wanted.

Maybe try to chill?

Maybe try to chill?

Call me childish, but I still sometimes wish on things, like the “first star I see at night,” or the clock every time I catch it at 11:11. For the past two and a half months, I wished I would be able to run the marathon — and it worked! Similarly, when I was younger and my mom would drive me home from dance classes, I would look out the window so I could wish on the stars, and I always wished I would grow boobs. That happened, too! I may not be religious or spiritual and I may be too cynical at times, but damnit if I won’t forever believe on star and clock wishes. (And next on my wish list is world peace, I swear.)

So now that I have boobs and a marathon medal, what comes next?

ALL THE DREAMS HAVE COME TRUE. Except the one about being healthy. But ALL THE OTHER ONES!

ALL THE DREAMS HAVE COME TRUE. Except the one about being healthy. But ALL THE OTHER ONES!

Well first and most importantly — and really the only thing that matters on my to-do list right now — is getting healthy. Not healthy enough for one day or healthy enough for 4 hours and 49 minutes, but healthy enough to live like a normal human.

When I saw my doctor a few weeks before the race, he prescribed me two forms of Uceris, which is a mild steroid that targets the colon. It’s not really a fix for my symptoms, but he said it should help with the urgency (i.e. the “I need a bathroom rightthissecond” moments that consume my waking days and sleepless nights). And with the exception of the marathon day — magic, I tell ya — the Uceris hasn’t helped. (I attribute the fact that I was able to survive the marathon to a high dose of Race Day Imodium, and the fact that I went into the whole thing stress-free.)

Stress-free and doped up on anti-diarrheal medication!

Stress-free and doped up on anti-diarrheal medication!

The urgency is still raging, and I still can’t do a lot of the things I want to do. I got a few great days when I went for runs, and for those I’m definitely grateful. But I want all of my days to be good days. I’m so exhausted from spending hours every day in the bathroom. I’m just so completely over it, and I want my life back. I want to be able to sit through an entire client meeting without having to “run out to take a call real quick,” or to go out with friends and walk places without feeling constant panic over the location of the closest bathroom.

At the New York Road Runners Night of Champions party the Friday before the marathon, with some of my favorite people. They had fancy porta-potties outside!

At the New York Road Runners Night of Champions party the Friday before the marathon, with some of my favorite people. They had fancy porta-potties outside!

The good news? I was approved for Stelara, which I’m told is very similar to the study drug I was on for two blissful years, and I get my first infusion on Wednesday! (After that it’ll be an injection, not an infusion. But this loading dose will get me started.) I don’t expect it to work overnight, or even over the course of many nights, but I’m hoping that this will do the trick to get me out of this flare and back to normalcy. Whatever that is.

Also, this is your daily reminder to be your own advocate when it comes to your health. After seeing my doctor last month, I was told I would get a call from his office to get me started on the Stelara “soon.” It took three weeks of me calling and emailing the office daily for them to finally get back to me and get me set up. I kept getting emails back saying “someone will call you today,” and no one ever did. So I was persistent. (I also repeatedly asked them to give me the number so I could be proactive and call, but nope. Apparently that was asking too much!) Anyway, I’m getting the medicine Wednesday and I’m feeling hopeful and positive.

On the running front?

We had a Project Start event on Wednesday at Mile High Run Club. I made it Mile High Walk Club.

We had a Project Start event on Wednesday at Mile High Run Club. I made it Mile High Walk Club.

I’m back to not running, which is a bummer. I gave myself all of last week to rest and recover from the marathon. I was sore on Monday and Tuesday, and by Wednesday I was walking pretty normally. By Thursday, I was fine, so I took a spin class, and then did yoga on Friday. My legs were fine; my stomach was not.

Project Start does Mile High!

Project Start does Mile High! I walked. The whole time.

Running the marathon was great for my emotional spirits, but I’m not surprised that I don’t feel great now. Running a marathon is hard on your body, and I knew it would take longer than normal for my body to recover considering the amount of inflammation I’ve got going on. Plus, my nutrition was garbage last week. I ate a lot of processed trash, and had a few drinks on more than one occasion. So I know I’m in no position to complain.

This week it’s back to business. Back to getting good sleep, back to feeding myself properly, back to consuming more water than champagne. I don’t regret celebrating for a week straight, but I know that it didn’t do anything to help my Crohn’s cause, and I feel it. I feel worse right now than I did in the few weeks right before the marathon, when I had finally started to see some improvements. But I kind of expected that might happen.

Putting down the champagne now...

Putting down the champagne now…

Meanwhile, I thought I would finish the marathon and immediately want to sign up for a spring race, as is often the case. After seeing some positive progress in the early weeks of my training, I knew I had it in me to run a 3:45 marathon. Of course, it didn’t work out that way, so a part of me expected to cross the finish line and start considering spring races for a re-do.

Instead, I’m feeling pretty meh about the marathon distance. As much as I loved the marathon and had a blast the entire way, it sure did feel long. I do love the training and I love the feeling of accomplishment you get after running 26.2 miles in one shot. But I also think my body may fare better with shorter distances. So we’ll see, but I’m surprisingly not itching to register for another marathon right now.

CALM. DOWN.

CALM. DOWN.

Lastly, in the interest of being more efficient in the bathroom, I bought a Squatty Potty. It is the best investment I’ve made in a long time, and I highly recommend it. You don’t even need Crohn’s to love it. (Many of my friends agree and swear by theirs.)

So that’s where I’m at. Squatting and wishing on stuff and thinking positive thoughts!

11 Responses to "Now What?"

Man… I’m with you on being your own advocate. Sometimes it feels like calling the doctor and insurance and pharmacy and mail order pharmacy and infusion center and who knows who else is a full time job just in itself! And I always think that I’m young and have full mental capacity and I’m very organized – many people who need medications are not those things. Just, ugh!

I am an 11:11 clock wisher too.

sending you good vibes. also i read the letter Brian wrote. Loved it so hard. xoxox

I want to buy anything by Squatty Potty purely because their unicorn commercials make my soul happy.

I hope Stelara is magic! And yes to being your own advocate – it’s a mess of a system (we try, I promise!), but a squeaky wheel certainly helps.

Do you take anything for pain?

Not usually. I can tolerate the pain, even at its worst — it’s the urgency that I struggle the most with. Tylenol doesn’t really help with the pain, and stronger painkillers make me constipated…not ideal!

You are so right about being your own advocate. So many times, if you don’t keep pushing, nothing gets any better.

So happy you had a good race. I hope your new medicine starts helping soon.

Squatty potty! I didn’t even know there were actual versions out there…my friend bought us all short little stools last Xmas, and told us they were “poop stools” (which I guess is kind of a pun unto itself lol). I suffer with constipation/issues going on a regular basis, and I can’t say enough about how much it helps!!! Glad to hear I’m not alone!

How is it you got such an awesome BIB number!? I mean 20262?!?!?!

Fingers crossed that Stelara is magic! I also wish on stars and 11:11, so I’ll wish you good things and healthy guts.