The Least Fun Post To Write

Date: July 26, 2015 at 5:25 pm- by Ali- Comment(s): 51

There is no bush worth beating around here; no lede to bother burying.

The Crohn’s is back.

With two months to go until the wedding.

The wedding spot! My dad claims he's going to shave his mustache for the wedding. I've never seen him without a mustache. DON'T DO IT, DAD.

The wedding spot! My dad claims he’s going to shave his mustache for the wedding, so in this photo he’s testing out “what he would look like without it.”

It started on July 4th. I was very excited to wake up early and run down to TriBeCa for a yoga class at Lyons Den. Best day ever!

My people!

My people! I’m the one in the legs.

Fortunately I left the apartment extra early, because I found myself making several bathroom stops within the first few miles.

Urgent ones.

Bloody ones. (I’m sorry. There’s simply no way around that.)

By the time I finished the 7.5-mile run to the studio, one thing was very clear.

I hadn’t eaten something bad for dinner and I wasn’t just having an off day. These symptoms were entirely consistent with a Crohn’s disease flare-up.

I went to New Hampshire for a few days to try and chill out. Instead I mostly just got a lot of bug bites.

I went to New Hampshire for a few days to try and chill out. Instead I mostly just got a lot of bug bites. This is a photo of me at my dad’s softball game, hiding under a towel to prevent bugs from finding me. It did not work.

At first, my symptoms were only present when I tried to run. I would spend a lot of time in the bathroom and dealing with a bit of discomfort before being able to leave home, and then the first few miles of each run were particularly stop-filled. It was frustrating, but I didn’t want to dwell or worry.

This run two weeks ago was so bad, and I was so angry about it, but then the sunrise was awesome so...upside.

This run two weeks ago was so bad, and I was so angry about it, but then the sunrise was awesome so…upside.

Over the past few days, though, things have gone from “only on the run” to “all the damn time.” And I know very well the difference between “a stomach thing” and what is very clearly Crohn’s-related. This is Crohn’s. F-ing Crohn’s.

After a year and a half of being so perfectly healthy, I’ve been very suddenly transported back to my flare-filled ways.

I’m stopping up to a dozen times when I try to go for a run.

One month ago, feeling fine! Now, NOT SO FINE.

One month ago, feeling fine! Now, NOT SO FINE. I am very sad at the prospect of not going to November Project on Wednesday on account of my stomach not cooperating. It’s bridge day!

I’m canceling social plans.

Perhaps most discouraging of all, I’m afraid to leave home. Yesterday, Brian and I walked a measly eight blocks to the movie theater, and I was panicking the entire time. At dinner, I kept my eye on the restaurant’s sole bathroom for the duration of our meal so I knew whether it was occupied or not.

And I’m exhausted. Not to mentioned frustrated. And confused. Everything was going so well for so long.

PS As I write this post, my buddy Sarah here is DOING AN IRONMAN.

PS As I write this post, my buddy Sarah here is DOING AN IRONMAN.

The upside (because I’m always willing to find one) is that this is not the worst flare I’ve ever had. I’m fortunately not experiencing any of the symptoms beyond the stomach pain and “urgency.” I don’t have the fevers, night sweats, or body aches. So far it’s all pretty contained to the bathroom stuff.

Still, I’m obviously not happy about this.

The biggest question in my mind: Why now?

UNRELATED PHOTO. But it's pretty and it's #nofilter and it adds niceness to an otherwise bummer post.

UNRELATED PHOTO. But it’s pretty and it’s #nofilter and it adds niceness to an otherwise bummer post.

Why two months before my own wedding? I was sick at every wedding I attended for so long. I’d love to not be sick for my own.

Why when the clinical trial has been working so well, and when we know we don’t really have any other options to test out at this time?

Why when I’m really, genuinely, truly, madly, deeply happy?

BEING HAPPY. And healthy!

BEING HAPPY. And healthy!

For every question, a probable answer: Stress.

Everyone in my life, from my mom to my doctor to the internet, insists that much of this disease is brought on by stress. My history with Crohn’s is completely concurrent with that analysis. My toughest flares came when I moved away to college, when I studied abroad in Australia, when I got my first post-college job and moved to NYC, after I went through a breakup, and when I got promoted and was generally anxiety-ridden 100% of the time.

"IT MUST BE THE PRESSURE OF ENTERTAINING." Who knows it?

“IT MUST BE THE PRESSURE OF ENTERTAINING.” Who knows it?

And now, another big career change, plus wedding planning, and all that comes with both those things.

I do believe there’s more science involved and a more complicated answer than just, “I’m sick because I’ve been excitingly busy.” But the immediate reaction I can take is to try to alleviate some of that. I’m working on figuring out how exactly to proceed. And I’m seeing my doctor on Tuesday.

I can't run so much, but I can do "push-ups" on a stationary bike! Kind of.

I can’t run so much, but I can do “push-ups” on a stationary bike! Kind of.

In the meantime, it’s going to be fine, right? This isn’t the start of something big. It’s just a little bump in the road to keep things dramatic!

You’ve got two months, body.

This is riiiiight around the corner!

This is riiiiight around the corner!

Figure it out.

Posted in Crohn's disease and tagged -

51 Responses to "The Least Fun Post To Write"

ugh. im sorry ali. that sucks. i hope it passes soon xo

I’m so very sorry this is happening right now. Is there a possibility that you are off your study drug? I don’t know the design of your trial, but some trials could include a period(s) of drug discontinuation – for example, a wash-out design.

Nope, I’m still getting the drug in its full, regular dose, which is why this is frustrating! It’s been working so great since last year, and I’m in the trial until early 2016. So it’s a bummer to think it may be wearing off. Hoping the doctor has some ideas when I see him Tuesday.

NOOOOO!!! That is so unfair, and such a bummer, and I congratulate you on still looking for the upside in all this shit!
I really really do hope that this fucking Crohn’s flare up leaves ASAP, that you can reduce the appointments/deadlines/etc. on your schedule and get some rest and that you get healthy again soon. I mean, it was possible for you to be healthy for the last 1.5 years, so it is possible for the next 1.5 years, too, right? Keeping my fingers crossed and you in my thoughts!

Umm, pun in the first sentence not intended…

Awww I am SO sorry to hear this 🙁 I’ve loved seeing how happy and healthy you have been and I pray it is a short term thing and you are happy and healthy for your wedding. xo

Girl, thinking ALL the positive thoughts for you. We will miss you at NP but will be dancing extra hard for you to get better REAL fast. <3

Hillary says: July 26, 2015 at 9:17 pm

Thinking only positive thoughts for you right now, Ali. Get better soon!

No, Ali! I’m so sorry. This is terrible. I stopped and prayed for you right when I read this. I hope your doctor has some wisdom for you on Tuesday, and I hope your colon gets with the program ASAP!

🙁
I really hope things work out in these 2 months and you get to enjoy your big day.
{hugz}

I am incredibly sorry.

I am so sorry to hear this – I pray that this will be under control before your wedding. Just know that no matter how your wedding day goes, when it is over you will be married and that is all that matters. Everyone that will be there loves you and will be understanding if things don’t go exactly as planned.

Really sorry. Especially that you are suffering and running has become not so fun. Also, sad that everyday things are becoming stressful for you. Here’s hoping this passes quickly and will not interfere with your wonderful wedding day.Hugs.

Hope you feel better Ali!

Ugh, Ali I am so sorry! Rainbow star confetti HAS to help though, right?? I always feel like “stress” as a contributor to health issues is a bit of a cop out but the evidence to back that up definitely is there. It’s particularly frustrating though, because unlike “making out with someone else who has mono” you really can’t avoid stress. I feel your frustration.

Sending loves and hugs from NC…Crohns is such a jerk! Hope you are able to reduce some stress and get better soon.

Carrie M says: July 27, 2015 at 11:53 am

Such a huge bummer! I hate this for you. Sending you huge, positive, healing vibes. Feel better soon!

Oh sweet girl! I totally feel you! Crohn’s patient right here. I very much hope you get better soon.

So gutted for you.

If you know it’s stress related then it might be worth cutting out everything non-essential that causes stress until after the wedding. Maybe just stop running or exercising if that’s the trigger. Your main goal has to be being healthy for your wedding and that’s stressful enough. I really hope it passes quickly. xx

That’s the plan — to cut the stress! Running and exercise keep me mentally happy, so I like to stick with them, but all the moving around just…gets things moving, ya know? So it exacerbates things a bit. Super annoying. I have full faith this is just a temporary thing on account of keeping life exciting!

I’m 6 days out from my wedding, super happy and excited, and my whole GI system seems to essentially be shutting down. It’s like, no thanks, I don’t want anymore food, and if you give it to me, just wait and see what I do to it! So I can totally imagine that this situation would get exponentially more complicated with something like Crohn’s. Good luck, hope your doctor has good ideas to make your gut chill out for a while (or forever)!

Jessica says: July 27, 2015 at 1:34 pm

I am so incredibly sorry! I am only a year into my Crohn’s diagnosis so I can offer you no “here is what works for me” advice (not that anyone wants unsolicited advice anyways). All I can say is I have known that fear and frustration this year. Also as a non-doctor I can’t say you are not at the end of the road if the trial drug isn’t being as effective, but I can say that there are more trials! So don’t lose hope! Have you heard about the new drug mongersen in clinical trial? It makes me feel hopeful about the future with this disease. And sick or not you’ll be a beautiful bride!

Nooooooooo!!!! I am so sorry, friend! This is so sad and dumb and frustrating… Wishing you all the calms a stomach could have, and hoping that it will soon feel like it has the past year. Thinking of you.

Hi Ali,
I’ve been reading your blog for awhile now but am usually too shy/lame/whatever to comment. I just wanted to send some support your way because your posts have been a big support to me. I suffered my worst Crohn’s flare last fall and ended up with an abscess and a two week hospital stay. Anytime I was frustrated or worried about something, you had already written those exact feelings. Your posts have been a huge help in trying to stay positive through everything. I’m so sorry that your body picked right now of all times to act this way. I know you’ll keep that positive attitude going and shake it off like TSwift!

Well this is shitty! I was so excited you had a new blog post. Not expecting it to be a flare declaration. I wish I had answers to your why.

Your wedding day will be perfect regardless. Wear a diaper under the pouf! Ok sorry that was supposed to be funny.
Please keep us posted.

I promise a more fun post later this week! Deal?

So sorry to hear this! Hope you’re back to your healthy self ASAP. Sending you healthy thoughts!

You can kick this sh** Ali! Get on some extra meds (I know, you’ve done it all, but cortifoam? that saved my ass- literally). Lots of sleep. I know that feeling – lots of hugs and prayers your way.

I do believe I have some Cortifoam in one of the medicine cabinets around here! Hoping not to dig it out, but always willing. So sexy!

I am sorry. I don’t know what else to say. I was truly saddened to read this post- sad for you. And angry.

I’m sending god vibes, prayers, and whatever else you may believe in your way.

I hope the doctor goes well, and that you can start feeling better! Lots of commiseration; I’ve got ulcerative colitis, and stress makes it flare up too. I totally started preventative-medicating before my wedding a few years back.

(Also: Ross, FAJITAS, yes?)

CORRECT! I’m making FAJITAS!

Your blog means so much to me I have crohns and everything you say helps me so much. I have so much faith that you will feel better by your wedding you guys are such an awesome couple who deserve nothing but the best! I know this will past and one day will not impact you. All the best to you.

I got married Sept 26, 2009. Same day!
I was flaring and ended up in hospital for 5 weeks three months later. (To give you an idea of the kind of flare) I didn’t eat very much that day, or even drink, but it was still the best day. I married my best friend. Somehow, with all the joy and excitement I had a little reprieve for one day. I hope everything turns around for you, and you get exactly the day you want. Else, I wish you a free day like I had. Hang tough.

WEDDING DAY TWINSIES! I love it! So sorry to hear about the timing of your flare, ugh. But love your perspective!

I am so so sorry and sending healing prayers your way! You deserve to be healthy for your wedding day.
I just went for another flex sig yesterday which only confirmed I am still not in remission (flaring since October, high five!) so I am starting to understand first hand a small portion of the frustration you have dealt with the majority of your life.
Hang in there!

Ugh, so sorry, friend 🙁 I can’t believe it’s been going on for so long for you. (I mean, I guess I can, I just hate it.) Always here to chat, vent, and swap stories! Or sit in silence and take turns in the bathroom.

Glad to see you were running and feeling better today. Hope it continues to improve.

Meh, unfortunately nothing has improved (yet!), but still trying to get out the door and do what I can. This morning’s “interval session” was more of a “walk around the Bridle Path playing with puppies,” but I’ll take it! (Also…how did you know that?)

Brutal heat 8 miler this morning. I saw you out there and thought maybe you were feeling better. Next time I will fangirl you!!

Impressive! Nice work. It was swamp-like out there today. And yes, please do say hi next time!!

This is my first ever comment. But it is hard to read your post and not be somewhat frustrated. Take it from someone that just got married last month, wedding planning is supposed to be fun and exciting but often times it becomes stressful. Running is also a hobby and not your career. If both of these things are making you sick, you should take a step back and relax. Look at the bigger picture and what is really important in life. Your relationships and health are important, not portraying a perfect wedding or a perfect body.

Hi April! I totally get how this post could come across in a way that would be frustrating, and that definitely wasn’t my intention (writer fail). I should’ve better explained, but wedding planning IS fun, and I love most of it! Some logistical stuff is annoying (and the COST of stuff!), but I haven’t felt super stressed about planning the wedding. There’s just all kinds of underlying stress at the moment (work, money, etc.). And running doesn’t stress me out because I’m not training for anything (for once). So if a run doesn’t go well, I can (and will) call it quits, no pressure. If I can run, it’s great! If not, it’s just disappointing. All that to say running isn’t making me sick, and wedding planning is, as you said, mostly fun! (And perfect body, LOL. Not gonna happen.)

Ali, thank you for your respectful comment. And I didn’t want it to come across as preaching from the choir. If there is one thing I regret from my wedding it is that I worried about the small things too much. I would hate for you to be sick during your wedding and was hoping to put things in perspective but it sounds like you’ve already done that. I’m glad!

Dang. So sorry to read this 🙁 All I can say is I really hope things turn around. You deserve a kick ass wedding day!

Hope you feel better soon! Nothing is worse than being sick and not knowing how to feel better. You have such an awesome attitude though. Even this post made me laugh, which is really Impressive considering how terrible you must feel. Hang in there!!

Hey Ali, I have CU and your blog has helped me a lot. I really hope you’ll feel better soon and that you’ll have the wedding of your dreams! We also just got engaged (at the top of a mountain) and right now, I seem to spend much of my free time on the toilet…

Sending positive, healthy, happy, and healing vibes your way!!! I hope this is a very brief flare-up and that the clinical trail you’ve been a part of continues to work wonders for you. P.S. I love your random photos of sunsets weaved into your posts 🙂 I’m glad you still find the beauty in everyday life even when things are tough.

Brittany says: July 29, 2015 at 11:02 pm

Hey, I just started reading your blog a few weeks ago but I have read most of the archive. Everything that you have said has resonated with me so much. Dealing with ibd is awful but it is just how we have to be in the world. I really hope your flare abates quickly at least enough for you to thoroughly enjoy your wedding. I will be sending healing thoughts your way. Might sound silly but I have added you to my toilet paper list. Every time I have to use the loo I send healing thoughts out to everyone else who is in a bad spot with crohns or UC. And since I am in a flare at the moment that will be many good thoughts coming your way each day.

Angie Burke says: July 30, 2015 at 11:16 pm

You are going to be the most beautiful bride!! I know it!!!