An Update on the Crohn's Situation + Things I'm Loving Right Now

Date: June 20, 2017 at 11:01 am- by Ali- Comment(s): 19

(Remember The Situation? What’s he up to?)

Hello hello hello and Happy Tuesday!

That, my friends, is a touch of forced enthusiasm. The reality is, I’m having a bit of a tough time right now. This Crohn’s flare isn’t letting up even a little bit, and while, I know, that’s old news and I’ve done my fair share of complaining about how this disease roughs me up physically and emotionally, it’s kind of all I can think about right now.

Brian and I were in Rhode Island for a few hours this weekend. We drove up Friday for his cousin’s high school graduation ceremony, and there was so much traffic that we missed the ceremony entirely (fail!). Beyond the traffic, the ride was a struggle for me. I was so uncomfortable and so anxious about traveling, and definitely had to have Brian pull over so I could use various rest stops and a rogue porta-potty on the side of the road. Crohn’s disease is very glamorous!

Yay Hannah! Ellie is very proud of you!

So that’s where I’m at.

When this flare started two-ish months ago, it wasn’t the worst. It never is at first. I was in the bathroom a lot and was bleeding quite a bit, but I wasn’t in pain and wasn’t experiencing too many other side effects that can come with flares.

Now, I’m in the bathroom a lot more (though there’s less blood), and I’m in pain a lot of the time (stomach cramping and discomfort mostly). I’m also feeling the exhaustion and fatigue — the kind you can feel in every muscle of your body. I’m getting an OK amount of sleep, but am still tired all the time. (I sleep great on nights I take an Ambien, and sleep terribly — tossing and turning and bathrooming and generally being uncomfortable — on nights I don’t.)

Snuggle pup!

My scalp psoriasis is flaring up, but I’m not experiencing many other side effects, which is nice. No fevers, no night sweats, no dramatic hair loss. It’s contained to needing a bathroom round-the-clock, so that’s an upside, even if it doesn’t always seem that way.

As always, it’s tough having no idea where I am with this flare. It might get worse, it might wind down soon — I have no clue, and I haaaate that.

This morning I was thinking about how my last run was one week ago — until I realized that was actually two weeks ago. Time flies when you’re in the bathroom all the time! I haven’t been doing much physical activity at all, and haven’t even tried to run in a while.

Global Running Day bathroom selfie!

I’ve skipped out on two races I was registered for (the Mini 10K and the Harlem Mile), and while opting out of the races was the right move, it’s still frustrating when your body holds you back from things you’re otherwise motivated to be doing. I went to a spin class last week, but otherwise I’ve been physically inactive. On the one hand, yay rest! Rest will heal me! Maybe! On the other hand, I’m feeling a little stir crazy and could probably use some fresh air.

My outlook when it comes to exercise during a flare is that I do whatever will best serve me mentally. Yes, physically there are benefits to working out and being active, of course. But the bigger thing I take into consideration is the potential emotional gain or detriment: If I know I can get to a class or through a workout stress-free, I will go for it. But if it’s going to cause me anxiety or unease, I’ll opt out.

Bike riding is almost always a safe bet!

For example: About a month and a half ago, I convinced myself to go to Lyons Den for a morning yoga class. Mornings are not good for me, and I know that. My stomach is at its worst in the morning. But I had a jam-packed day (I was interviewing Natalie Morales later on!), so if I wanted to get a little sweaty, this was my only opportunity. I got myself out the door and onto the downtown ferry. And I will spare you the details, but I will say that it did not go well.

I haven’t been on the downtown ferry since then.

Similarly, after a tragic-to-me experience on the run two weeks ago, I haven’t tried running again. I know it’s probably more mental than physical in those cases, but I just don’t want to put myself back in those situations. They are, for lack of a less dramatic word, triggering for me. I see that downtown ferry now and I feel anxious and my stomach immediately goes into overdrive.

ELLIE SLEPT ON ME LIKE THIS AND IT WAS AMAZING.

It’s always hard seeing other people do what I want to be doing or used to be doing. I miss waking up early and running as the sun rises. It sucks not being able to do that, and it’s hard watching my friends keep doing those things without me. But that’s life with a chronic illness. I’d love to say I’m cool with it, and that scrolling through social media no longer upsets me, but it does. Not in a resentful way, just in a bummed out kinda way.

Meanwhile, I am trying to figure out what to do about my diet. Cutting dairy has helped, but beyond that I am debating which lifestyle changes I can make that will be most effective in helping calm this flare (and in the long run). There are so many theories out there about which lifestyles work best for someone with Crohn’s disease — SCD! Low-FODMAP! Paleo! Grain free! Gluten free! Vegan! — and I’m open to anything.

GREEN STUFF. VERY HEALTHY.

Right now it feels like nothing digests well and everything goes right through me and makes my stomach hurt, so I need to do some playing around. (Things I love: definitive answers and solutions. Things I hate: experiments.)

One day at a time…

In the spirit of forcing a bit of positivity on myself — and the world! — here are a few things I’m loving right now.

Matching hoodies for the whole family!

WATCHING

Big Little Lies: I loved it. I know I mentioned this already, but I watched the series while I was in Las Vegas, and it was so good. I want to be Bonnie, but let’s be real, I skew much closer to Madeline. The music on the show was excellent, and I both do and do not want to live in Monterey. I am so sad there will be no Season 2, but I did like the ending.

Orange is the New Black: I finished the latest season pretty quickly (13 episodes is NBD when you’re sick and have plenty of time). I didn’t love the season as a whole and I thought the flashbacks were really weak all season. Usually the flashbacks feel so crucial to understanding the characters and how they got to Litchfield, but they all fell flat for me this time around. Taystee is awesome (get Danielle Brooks some awards, please!), and I sobbed at that very last scene during the finale episode. (Maritza saying, “I love you” to Flaca! All the women banding together and holding hands in the pool. Ugh. Plus, that song gets me every time. Including in Step Up Revolution.)

FOLLOWING

Spencer Pratt on Instagram. And you should, too.

Living the dream

A post shared by Spencer Pratt (@spencerpratt) on

LISTENING

To David Willey’s final “Moonshot Marathon” episode of the Runner’s World podcast. David just stepped down as editor in chief of Runner’s World after 14 years, and he’s spent the last few months training to run a Boston Qualifying time at the Bayshore Marathon. The whole podcast series was really well done, but the last episode was so good. Listen to it. Preferably on a run.

There are no new episodes of the Ali on the Run Show this week (something had to give), so catch up on ones you haven’t listened to yet and I’ll be back with new episodes next Tuesday and Thursday! If you haven’t listened to the show yet, might I recommend a few of my favorites?

Lily was giving me kisses!

LIKING

The Ali on the Run Facebook page! I finally created a Facebook page for all things Ali on the Run, so make sure you like it and follow along for blog updates (a rarity!), podcast updates, and [even more] pictures of Ellie.

She loves to prop herself up on pillows and blankets and stuff. SHE IS THE BEST.

 

NOW YOU DO IT! What are you loving lately? Gimme some good stuff. 

19 Responses to "An Update on the Crohn's Situation + Things I'm Loving Right Now"

If it makes you feel better (literally, maybe this is a new experimental treatment concept), The Situation is currently languishing on VH1s Marriage Bootcamp with his brothers? With 16 and Pregnant’s Farrah Abraham. So, when you’re feeling gross/bad/sad, just imagine how much worse it could be.
http://radaronline.com/celebrity-news/marriage-boot-camp-feud-mike-sorrentino-situation-farrah-abraham-video/

NatGeo has a miniseries about Albert Einstein that’s fascinating. I’m hooked

Hi Ali, I am flaring too, that mid level still functioning flare where I’m not sure if I am going to take a turn for the worse or start healing and get better. Of course I am hoping for the latter. My bloodwork just revealed I am anemic again. This isn’t the first time, and is usually why I am fatigued and my hair falls out so much; however, this go around, I have been experiencing horrible leg cramps and I guess what would be considered restless leg syndrome. I didn’t realize cramping and leg pains were a symptom of anemia. It makes getting out of bed and taking my first few steps in the morning an olympic sport for me. I also have developed quite a craving for marshmallows! Ah, crohns…It makes me appreciate my good days and want to suck the marrow out of them. I hope you find more good days too. ~Alison

Suzanne says: June 20, 2017 at 1:54 pm

FYI The above comment – I about choked on my drink laughing.

I am loving French fries. Not that I haven’t always loved them but for some reason they are suddenly my “safe” food – which is scary as all get out.

I am loving open windows (at least when the humidity level isn’t classified as “swampy”).

I am NOT loving that my baby boy is somehow leaving for college in two months and two days (totally not counting).

I am NOT loving that you are flaring. Giant internet hugs/wishes/vibes that this flare skedaddles sooner than later.

This isn’t crohns related but I injured my toe in March and couldn’t run for 10 weeks. Finally healed enough to start running again….slowly…needless to say after 2 weeks of the shortest and slowest runs my toe injury returned! and I’m now looking at most likely another 6-8 weeks of no running and mostly limping, icing resting etc. It sucks. Seeing the world (including my boyfriend) run 3-5 days a week and into double digits makes me so sad. I miss that. I don’t even have a formal diagnosis other than the podiatrist saying “it’ll heal….just give it time”. Dr. Genius. And I’m still scrounging the money to pay for his visit and my MRI which revealed ……wait for it…..swelling….geez. that’s all? So why am I in SO MUCH PAIN? I’ve become as depressed as I can remember since my husband died 18 years ago. All this to say…..I’m sorry you are unable to be Ali on the RUN. Perhaps for the next XX weeks until you feel better you can call yourself Ali on the Rest? 🙂 (Trying to be funny to cheer you up so hopefully you take it that way) Can’t wait for you to be looking at this flare in the rear view mirror.

House of Cards! If you like drama it rocks.
Hand in there, it will get beter.

I’ve been gluten free for just over 2 years. It wasn’t easy at first and I’ll never look at a pizza the same way. But, I think it has helped me dramatically! Food for thought. Happy to chat more about it if you’re interested.

I don’t think I have commented on here much (except about dairy-free ice cream; I’m very passionate about that).

I’m so sorry to hear that you have been flaring for so long. I’ve gone dairy-free as well to combat symptoms.

BUTTTT, the reason for this comment is I’m on remicade (i know you’ve tried it). I use to work for pharma companies (prior to being diagnosed) and they have these programs where patients can pay only $5 for their medication. I’m not sure if you are aware (stelara has it), but since I know a lot of crohns/colitis people read your blog, I thought maybe you could share that information. It saves me $650+ per infusion, and for people who spend a lot of their income on medical bills, I think any amount can be helpful.

Maybe you could make a blog post sometime with your favorite resources for crohns patients (you know let everyone in on the things you know after being a patient for so long). Just an idea! Sending positive running vibes

Stelara: https://www.stelarainfo.com/stelara-cost-insurance-information
Remicade: https://www.remicade.com/crohns-disease/cost-support
Humira: https://www.humira.com/humira-complete/cost-and-copay
entyvio: https://www.entyvio.com/financial-assistance

Fear not, a second season of Big Little Lies is still in the realm of possibilities!!! http://www.express.co.uk/showbiz/tv-radio/817301/Big-Little-Lies-season-2-Nicole-Kidman-Reese-Witherspoon-HBO-Liane-Moriarty

I’m so sorry you’re in a bad flare right now. I have mild Crohn’s and just started on Humira 3 weeks ago after Imuran was a fail. I’m pretty sure you’ve tried Humira before and I’m not suggesting it for you or anyone (side effects still scare me), but in addition to the Humira and Entocort I’m taking, I have significantly cut out gluten from my diet and it seems to be helping. I came across Meghan Telpner’s blog and she claims to have silenced her Crohn’s symptoms through diet alone. I know everyone is different w/ this disease and diet modifications don’t work for everyone, but her blog has been a great resource for me when making this big lifestyle transition. Making small, incremental changes has eased some of the suck factor of giving up my favorite foods and I’m getting to the point where it’s not worth having that scoop of ice cream or piece of pizza. I watched a documentary that suggested that all auto immune disorders can be linked to a gluten intolerant component, even if you don’t have full blown celiac disease. Luckily, there are a lot of great alternatives nowadays to make food transitions (e.g., I gave up coffee but found Dandy Blend as an alternative) and there are a ton of blogs with alternative recipes for gluten free foods. It is frustrating how many different suggested diets there are for Crohn’s and it’s irritating and overwhelming to know what to follow, where to start, etc. I started by cutting out foods/drinks that I know right off the bat give me problems and now am working on the gluten free diet. I’m not 100% gluten free but am close on most days. It’s worth a shot if it helps get you out the door and back to running. Good luck!

Ugh, so sorry to hear you’re flaring again. My heart (and belly) go out to you. I did an elimination diet and cut out a ton of stuff when I was flaring (for 3 years) and saw some minor differences, but also had pretty much everything going right through me. You’re right; everyone/body is different! In hindsight (and moving forward if I flare again), I would: go on a liquid diet (to give myself bowel rest) and take anti-anxiety meds (not saying you need either). In the past I found cooked rice, avocados, ground turkey and deli turkey and coconut milk and ice cream tolerable. I’m always curious about SCD, but not willing yet xxoo

Hey Ali – No diet advice here, but I just wanted to send you some cheer (imagine spirit fingers aiming your way 🙂 ). Keep surrounding yourself by loved ones. You will get through this. I’m rooting for you, too!

Hey Ali!
I just wanted to send a quick hello and some positive energy. I’ve sure missed having new episodes of your show this week! I say this not to make you feel bad about not getting any new ones out. I totally understand you are not well, and you deserve to rest and do what your body needs you to do. But, I say this just to let you know how quickly your podcast has become a staple of my week! I love seeing a new episode pop up in my feed.
Take care of yourself, and your listeners (and readers) will be around when you’re back at it!

What do I love right now? Well, TV wise Im obsessed with ridiculous “reality” shows like “Expedition Mungo” (on animal planet), “Mountain Men” (on History), and “Expedition Unknown” (on Travel channel) Im also gearing up for shark week and have my shark outfits ready to go. Its normal to dress up like a shark, complete with hat, for the occasion, right?

No Crohn’s, but I do have colitis. I had a really bad flare last summer and I stuck with the FODMAP thing until I got out of the woods (and for the most part now when I’m not flaring). My experience is that it doesn’t make things worse and I was less likely to have that immediate discomfort/urgency after eating. It wasn’t the silver bullet we all hope for, but I feel like it was a step in the right direction and it made me feel like I had some kind of control in the situation. My two cents…

Jennifer DeLanghe says: July 2, 2017 at 12:15 pm

Hi, sorry to hear you are in the middle of a nasty flare. You don’t mention what you are taking to help other than maybe adjusting your diet. My son also has chrohns and as of now Remicade is working for him but I like to stay on top of other options and things others are finding success with. Hope you start to turn it around soon with what ever avenue you are pursuing !

Great pics, great read too! As for me, I’m training for a summer race with SportMe half marathon training app, which calculates distance, time, pace and calories.

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Lessons in Badassery

Oh Ali, I’m so sorry to hear you’re suffering again. I’m always amazed of how strong you are. You keep smiling in the toughest situations.

I wish I could help you. Trying to work on the food front is probably a good idea. As the saying goes “You are what you digest”, in this stage it’s probably most important to eat simple, easy to digest things that do not throw an extra burden on your system and do not cause additional inflammation. But what do I know.

I hope you’re getting better soon. Sending you a big hug.