I LOVE HOSTING PARTIES!!! Meh. Kind of. Sometimes. I used to, at least.

Not Myself

Date: August 20, 2012 at 9:07 am- by Ali- Comment(s): 106

I’ve been having a hard time lately.

It’s been three weeks since this most recent Crohn’s flare-up got pretty bad. It’s been almost three weeks since I sought out a new doctor (still adore him, by the way) and almost three weeks since I began taking a relatively high dose of steroids.

And it’s been three weeks without any real improvement.

There have been fleeting good moments — a short run last week, a salad for lunch one day that didn’t immediately rip my stomach to shreds and a few quality hours with great friends on Saturday — but the bad, more frequent times are the ones that are weighing on me so heavily.

Life should be awesome right now. It’s summertime! I got a promotion at work! I’m going to be on TV tomorrow! (Oxygen, 10 PM EST, “All the Right Moves” — check it out.)

Yes, my name is spelled incorrectly. Idiots. I'm embarrassed. But also I don't care.

In hindsight, I don't think I should have tucked my shirt in. Dang it.

Don't I look mean? Laying down the law with the dancers, NBD.

I know I’m a lucky person because I have wonderful friends and family and a roof over my head and clean water to drink and fresh food in my refrigerator.

But lately, that stuff is lost on me.

When I first started feeling sick this time around it was frustrating. This year has felt like one flare-up after another, and the flares never seem to fully go away. I was hoping this time would be different, though. I made the effort! I got the doctor! I guess in my mind I thought the mere act of “having a doctor” would mean he had a secret cure just for me.

Well that’s not the case. So…bummer.

Normally I go on steroids and I start to feel markedly better within 24–48 hours.

This time, we’re going on multiple weeks and my symptoms have barely changed. My doctor checks in with me regularly, and for now we’re just in the testing phases: bloodwork, CT scans, an eventual MRI and colonoscopy — all the really sexy, fun stuff! He doesn’t want to push pills on me or crazy medicine without being extremely thorough first, and I love that about him. The fewer pills I’m on, the better, and so I’m doing my best to remain patient.

Beyond the medication, I’m trying to pinpoint other factors that are making me unwell. Forget stress, because I’m over that. But I’ve put a decent amount of time into reading everything I can possibly find about food and diets and triggers — and I’m completely burned out from it.

I have lost interest in trying to decipher this disease. I want to give up. I am no longer fascinated by specific diets that will make me feel better. One day I will eat a bowl of plain pasta and feel great (Tuesday night), and the next day I’ll eat the exact same thing and it’ll send me to the bathroom in pain for 40 minutes (Wednesday night). Literally the exact same meal with completely different results. I don’t get it.

I’m tired of trying to figure it all out and I’m tired of everyone telling me what I’m doing wrong. People are trying to help, but everything comes off as criticism and makes me feel like I’m just wrong all the time. I have grown so tired of putting energy into simply taking care of myself that last weekend I really convinced myself I need a puppy, if only because then I can be distracted by taking care of something else — and maybe being more successful at it, since I don’t seem to be doing so hot in the “taking care of Ali” department.

Also I’ve heard that all of life’s great problems are solved with puppies.

No?

I joke all the time about how I love attention and I would willingly spend enough time in a spotlight to get a tan. Most days I’m happy carrying a conversation with a stranger and filling up my social calendar however possible.

I LOVE HOSTING PARTIES!!! Meh. Kind of. Sometimes. I used to, at least.

But for the past few weeks, I’ve been anti-all that.

I don’t want to see or talk to anyone except Tyler.

He rolls over!

…aaaand he faceplants.

I hate when people ask how I’m feeling. I hate that so many people last week chose to ask me if I plan to defer my New York City Marathon entry (come on people, it’s still far away). I hate that I keep canceling long-standing plans with friends because I’m just not well enough to leave my apartment, or because I’m just not up for it.

The first thing everyone — friends, family, coworkers, cab drivers — asks me each morning is “How are you feeling today?” I know they’re all well-intentioned and it’s amazing that people care enough to ask. But every time I reply and say “not great,” I feel weak and pathetic. Every time I email my boss to say “Having a rough morning, will be in a little late,” I feel like a failure for not being there to lead the team she put me in charge of. And every time I tell Brian I don’t feel like going out — again — I feel like a loser.

And so I lie a lot. I tell most people I feel fine when I don’t because I’m sure they have to be sick of hearing about it at this point. And I’m tired of talking about it because I feel so whiny — but at the same time, it’s something that has pretty much taken over my life at this point.

I feel like a brat saying I wish people would stop asking me how I’m feeling, but talking about it just reminds me of how not strong I feel right now. It reminds me that as hard as I try to distract myself from the fact, I am sick and I do have a disease.

A gross disease, no less.

As much as Crohn’s disease is so physical, I truly believe that the toughest part for me lately has been getting a mental grip on all of it (and, um, judging by the nonsensical writing happening here I think it’s clear to all of us that I have no such “mental grip” locked down). It’s hard to go through the day to day motions of life feeling like you have no control over your body. And you know me by now: I’m a big big fan of being in control.

It’s also challenging because people love trying to convince me that I can, in fact, control this disease.

“My sister’s husband cured his Crohn’s by going Vegan!”

“My friend has colitis, which is similar, and she decided to go Paleo and after two days of eating beef jerky she was symptom-free!”

“Seriously, just cut out dairy and gluten and you’ll feel so much better.”

I’m open to suggestions. I’m trying things. I’m doing my best. People often don’t understand just how individualized this disease is, and that what works so incredibly well for one person (your friend’s mom’s third cousin) may not be at all successful for someone else (me). I’ve been eating a lot of super-finely chopped salads for lunch, and those are usually OK — yet some people can’t go near raw vegetables during a flare. Dinner for me is some sort of plain pasta, usually gluten-free just to try it out, and that mostly digests OK as well…sometimes.

So what’s my point with all this complainy stuff?

I’m not myself lately and it’s killing me.

I wake up in the morning and it’s impossible to predict what kind of day I’m going to have. I used to wake up hyper-positive and I’d just hope the day would follow suit, but it’s hard feeling “yay life!” when I spend up to an hour in the bathroom every single morning. This morning I just wanted to ride my bike, which I haven’t done in a week.

Remember this pretty little thing I spent money on? Yeah, the Lexa hasn't seen much action recently.

But I was too exhausted to get out of bed and when I finally did drag myself out from under the covers, I was confined to the bathroom where things were not pleasant. So I just came to work, feeling defeated.

I know people will criticize how I handle this disease. Everyone has opinions and people love to share them. Everyone’s a critic. Everyone’s a doctor. Everyone’s a Crohn’s expert — except me. And to many people, I don’t really look sick. In fact, last week a colleague told me I “look great!” and asked if I’ve been running a lot. “Nope. Just Crohnsing.”

At the end of every day, I’m just trying to do my best. I’m trying to take care of myself and it feels selfish and it is very draining. I imagine I’m not fun to be around and as much as I try to force positivity onto myself and do the whole “I’m thankful for life” thing, ultimately I find myself getting frustrated and sad. But I’m trying. And I hope that soon whatever persistence I have will have me feeling like myself again. Because I think I used to be fun…

You know who is really fun? Tyler.

Kids in sunglasses = always hilarious.

And to all of you who let me go on and on, I hope your weekends were lovely and your Mondays are on a so-far-so-good roll. If you’re feeling healthy, enjoy it and take advantage. Do something awesome. Skydive. Then report back.

Posted in Crohn's disease and tagged -

106 Responses to "Not Myself"

I relate to this on so many levels. If you want, drop me an email and we can chat.

PS – I hope I didn’t/mean to offend you at all!

AliOnTheRun says: August 22, 2012 at 8:28 am

Not at all! Thank you for your kind offer :)

I know exactly how you feel. I feel a tiny pocket of rage every time I get an email telling me to try avoiding gluten or dairy. Um, the top surgeons in the country don’t recommend taking out your colon for a gluten intolerance. I’ve tried it, and it didn’t work, and that is why things are hard. So I know. But I also know people are mostly well-intentioned, so it’s hard to stay mad for too long. I do believe your doctor will figure out a plan that works for you. Until then, I will stop telling you to rest more!

AliOnTheRun says: August 20, 2012 at 9:21 am

You would be very proud of all my rest these days! I’m so good at it. There’s a permanent dent in my couch from all the time I have spent laying there.

Hang in there. Sometimes the absolute worst is the well-intentioned folks who want to help when no one really can.

Don’t feel guilty for taking care of yourself (or for not feeling all positive about the fact that Crohn’s is making life uber-rough right now). You are doing what you need to do – keep it up, girl.

You should hang out with Tyler for a weekend. He seems like an adorable, magical baby who could make you feel better. :)

I know nothing about Crohn’s so I won’t even begin to offer advice but I really do hope it gets better soon, and I still look forward to your eloquent and well-written posts, whether happy, sad, or angry! Also, I went to middle and high school with Travis Wall, so I’m finding it absolutely hilarious that I keep seeing pictures of him on your blog. Small small world!

I’m pretty sure all of life’s great problems are solved with puppies. Many, many puppies.

The fact that you can share this struggle with us, means you are way stronger than you think :) Keep your head up…and keep Skyping with Tyler…things will get better. I truly believe that something good has to come out of the darkness we sometimes feel.

Ali, I’m a long time reader, have never commented before but after reading this I really wanted to… I also have Crohn’s, and am also training for the NYC marathon. My symptoms have been acting up lately as well, and my medication regimen is all shook up. I know how frustrating this disease can be because one day you can feel fine and the next you don’t even want to leave your house. I know how hard it is to feel like crap but to just tell people you feel fine just because you don’t want to talk about it anymore.I don’t know how much this comment will help, but I wanted you to know (unfortunately) you aren’t alone in your feelings. I truly hope you start to feel better, and can get back out running! But you’re right — it’s still months away. You can do it :)

AliOnTheRun says: August 20, 2012 at 9:31 am

It helps :) Thank you, Chelsea. And yay NYCM! I’m excited for you and hope training continues to go well despite what lame-ass Crohn’s throws your way. And thank you for the comment. I appreciate it.

You know what? It does suck. I’m sorry you have to go through this. It’s like running, how people giving you advice on how THEY run are “trying to be helpful”; everyone has their own pace and has to run their own race. I’ll be praying for you Ali. I’m on vacation and it’s cold and rainy do I’m going to a surfing competition to liven things up a bit!

Girl, can I make a suggestion? Not about diet or anything. See a counselor. Talk to someone and work out your feelings about the disease and the marathon and everything. It’s good shit if you find the right one.

Friends, family and blogs are a nice outlet but you’re still getting biased (and often unhelpful, as you mentioned) feedback.

Before I got to your self-commentary about questioning your shirt-tucking-in in that picture, I was thinking “man, I wish I could rock the tucked in shirt like that!”

I have issues with my skin (particularly across my nose) that is tied in with my scalp, and oh how I wish one of my coworkers would stop commenting on it. I know she’s well intentioned when she’s saying “Oh, it’s been looking good lately!” But you know what? Just stop. Because I can’t control it and I can do the same thing to my face two days in a row and it’ll react differently and I just wish they would stop drawing attention to it, even if it’s to say something supposedly nice. Grrr.

I totally think puppies are the answer to everything.

Also, don’t defer NYC unless you really want to. There’s still loads of time (so I told myself over and over and over today)!

Wow, the space between the paragraphs did NOT show up. Boo.

AliOnTheRun says: August 20, 2012 at 9:50 am

Haha don’t worry, the spaces showed up when I read the comment in my email. It looked beautiful there.

Phew!

Oh Ali, hang in there. I don’t know you in person, but I read your blog every day because it’s my favorite and because you are both funny and insightful, and because it’s a nice little escape to read about someone doing things that are so different from what I’m doing (hanging out with famous dancers vs. quitting grad school early to go into practice as a school psychologist if I can find a job). And because your nephew is obviously adorable. I’m not sure if you’re a When Harry Met Sally fan, but if so, you’ll get this reference – sometimes I’ve found that it also helps to just lie there and groan for a while. Though it is certainly a different situation, I feel like I can empathize with your feelings about wanting to avoid people, places, and things – it is rotten to have people continuously asking you about the one thing you don’t want to talk about, and feeling judged by how you handle it. So I will leave it at this: thanks, as always, for sharing. And could you please do a post on leg-warmers soon? Because it’s getting to be that season again!

AliOnTheRun says: August 20, 2012 at 9:49 am

LEGWARMER SEASON!!! Now I’m all temporarily perked up! (And thank you for the kind comment. Can I groan at work? No one will care, right?)

Ali! Hang in there. I know how much it sucks, all of it. I don’t have Crohn’s, but i DO know how much this all sucks. I’ve had some weird, yet-to-be-diagnosed digestive problems myself for going on 5 years, and NOTHING seems to help. Your comment on having a “gross” disease– I get you. Everything you deal with, I understand. It’s humiliating, and it’s exhausting, and it keeps you from going out or going running or performing great at work all the time…etc, etc. Just hang in there. It’s frustrating to wait for relief when you don’t know when it’s coming, but things will calm down, and you’ll get back to being you.

My triple removed 3rd cousin had chrones. Do you know what absolutely cures chrones disease?

….
….
….
….

Legwarmers. .

I know very little about Crohn’s except that a good friend of mine has it, and she struggled quite a bit with it last year. I do, however, know a lot about doctors and how much they generally suck and are so quick to just prescribe a medication–any medication–to solve the problem with doing any tests. Almost every single doctor I’ve ever been to has done that to me. So you are one lucky girl to have such a thorough doctor. And you should totally get a puppy and you can put all kinds of adorable pictures in your blog for all of us to see! Keep doing what you’re doing and don’t feel bad or selfish for it. You have to take care of yourself first and foremost.

Hey Ali, I hope things get better soon. My suggestion would be to see if Tyler can come stay with you for awhile. :D

The pictures of Tyler are super cute! Also, I hope you get better soon!

I’m impressed with your ability to be so honest in the toughest of times.

PS- in reviewing your list of 100 happy things, i noticed that the last is David Beckham. GOOD NEWS – you can find him in statue form around the city.

http://www.huffingtonpost.com/2012/08/17/david-beckham-statues-nyc-hm-underwear_n_1796282.html

Hop in a cab and check him out. Happy underwear model gazing to you! (sorry brian!) [And sorry if you already knew about this]

AliOnTheRun says: August 22, 2012 at 8:29 am

OMG David Beckham. I’m going to buy millions of puppies and then camp out with them at David Beckham’s feet. It’s not weird if it will bring me joy.

It’s okay to tell people you don’t want their advice, and it’s okay to ask people to stop asking how you’re doing. It’s like when you have a big interview and people keep asking if you got the job–if you don’t have good news, no matter how nice people are trying to be, the asking makes it worse. It’s not rude to tell people that you will tell them when you feel better, and until then to please stop asking. Since nothing else seems to be working, you could adopt 15 puppies and switch to a fro yo and wine only diet. In my expert medical opinion that is surely the cure for Crohn’s. Or at least bad days ;)

This type of honesty is admirable. Whether chrons or not, I think we all go through these types of times when we are just putting on that smiley face. Keep truckin’, girl, your time will come.

Your post had me in tears. I completely relate with you and I have to say that I cherish your honestly. It helps those of us who have trouble talking about our disease feel less alone. Thank you Ali …

AliOnTheRun says: August 22, 2012 at 8:30 am

Miss you. Let’s please try to catch up when you’re back in the ‘hood. I hope you’re feeling well and hope the summer away has been incredible (which, judging from your photos, is exactly how it’s been).

I can relate-ish with this one. I’ve been battling upset stomach, pooping a lot, not pooping at all, burping, and farting like crazy for the past 2.5-3 years. It goes in and out, sometimes I go for 2+ weeks just fine and dandy like a normal person. I finally just got a diagnosis last week, IBS. I read just about everything I could…and quickly got tired of reading all of it. Especially when it’s a syndrome that is different for every person. Dairy is the biggest common factor amongst IBSers, so I’m weening it out to see if it helps. I’m going to miss brie so much! I’d say froyo but let’s be honest, I can’t not eat froyo…but I can not eat it as much.
It sounds like you already have a list of foods that are big no-nos, which is good. Maybe take some rest days from researching and thinking about Crohns (very hard I’m sure) for a mental break from it all. I realize I just gave advice…sorry…but not sorry. I hope you feel better. And there is no point in defering NYCM now. That’s a decision for later.

Puppies are great problem solvers! I got my shirt in the mail that I won from you last week and love it. I’ve wore it out and received compliments on it. Thanks!

Now granted getting idiot pneumonia, getting strep throat and have my idiot appendix out all in a 4 month period are no where NEAR this, I can sorta relate, as it pretty much killed all my athletic endeavors. The things that are the worst are the “perceptive” talks. Like, “put things in perspective, be lucky you have a job, a good family, BLAH BLAH BLAH.” Obv, I appreciate all those things, but it never makes me feel better. Can’t I just be pissed for a while?! And on that notes, I’m sending positive thoughts your way :) Hugs from Chicago!

AliOnTheRun says: August 22, 2012 at 8:31 am

We both have failing bodies and awesome nephews. When are you moving to NYC so we can be best friends? Bring your cat—I’ll supply the Double Stuf collection.

I am so sorry. If it’s any comfort, I’m not a Crohn’s Expert and have NO idea how to make you better. Get a puppy :)

I can’t wait to announce to my runner friends on November 5th that, “yesterday, my internet friend, Ali, ran the NYCM and killed it – and she killed it after nearly full year of battling Crohn’s flare ups.” Yep. It’s going to happen.

Sending “feel better” and “healing” thoughts to you, Ali.

“she decided to go Paleo and after two days of eating beef jerky she was symptom-free!”

This made me LOL, literally.

Hope things get un-frustrating for you real soon!

Very few people know this place…this place of frustration, of feeling like a failure, of feeling like you’re ramming into a wall head first, of feeling like your life will never be normal again, of feeling resentment towards everyone you know who is healthy, of feeling like it’s all your fault, of feeling like you’re being punished, of feeling guilty for then knowing how much worse it could be…. I’m so sad for you. And it feels like no one else on the planet could ever understand.

But you’re not alone. Seriously – I have been there. I spent YEARS in that scary place; please don’t hesitate tot email me with any questions you might have or just to vent and have a meltdown. I’d love to help anyway I can! Just know that even though you can’t see it there is a light at the end of the tunnel. I speak from experience…keep going; you’re on the right track.

AliOnTheRun says: August 22, 2012 at 8:31 am

Your comments always help, Kace. Thank you for being so awesome and understanding all the time. It really does mean a lot.

This sucks. That’s all there is to it. It sucks and I’m sure everyone, like me, who loves reading your blog will agree when I say that it sucks and I wish that there WERE some miracle cure for you. Until then, don’t apologize for how you handle your body, disease, job, anything! Be sorry you’re not sorry that you’re handling it in the best way you can and that’s all that matters. In the meantime, go to cuteoverload.com for a brief pick-me-up :)

Sorry that things have been sucky for you lately :( because that is never fun. Puppies fix everything, if you can’t get one, put pictures of them everywhere it helps x10.

Ali –
I get it. When you wrote about people thinking you look great, amazing, fantastic,etc. I was nodding my head with you. When I am in the middle of a flare my friends are kind of oblivious to the fact that I am miserable and in a lot of pain. I “look” normal, healthy, and happy from the outside but really I am hurting badly. I think it is hard for people to wrap their heads around because I look good not like I am sick.

I think you do amazing everyday just to get up dressed and out to work. Don’t give up on your place in the NYCM you are stronger then you think. Yes i think puppies are the answer to everything oh and super cute nephews!

I’m so sorry. Not feeling like yourself, especially when you’re so optimistic by nature it probably the most difficult thing to deal with (in addition to Crohns). I am thinking positive healing thoughts for you and I really hope your new doctor can shed some light and get something working to get you healthy again!

Why would people ask you if you were deferring the NYM?! They’re just nuts. There’s still plenty of time for you to train for it. Someone asked me if I was still going to run the marathon because I have Achilles tendonitis right now. I just did not get that question since I am still running now.

I know you don’t want to hear about everyone’s runs while you can’t get out there, but I was doing my run/walk schedule (I have my watch on vibrate, so I’m not one of those people with the loud beeping watches) while doing the Battle of Brooklyn. I kept seeing this one female runner with a Team Challenge singlet. She was really struggling in the last loop. She was walking a lot and holding her side (maybe she had a side stitch). I wanted to walk next to her and tell her all about your blog and ask her if she had Crohn’s, but she was struggling and did not look like she wanted to talk to anyone and I didn’t want to seem creepy — “Hello, I’ve been running behind you for the last 8 miles. I noticed you have a Team Challenge singlet on….” Of course when she started walking I did wonder if she was having Crohn’s symptoms. Well, I hope she finished. I know I’m babbling. I just wanted to say I thought of you on my run.
I hope you feel better soon and get back to feeling like you again. If adding lots of photos of puppies and of Tyler to your blog posts makes you happier, please go ahead and do it. Both types of photos make me smile.

Tyler is adorable and awesome! Im glad he makes you feel so much better!

You took all the words right out of my mouth. I hate this disease. The mental toll is definitely the worst. I hope you start to feel better soon!

I hear that, Amy. It’s great that there are blogs like Ali’s and forums where people (like us) can go to and relate with one another who are going through similar frustrations. Keep your head up!

hey Ali, i’m so sorry how much this all has been sucking. It’s got to be incredibly hard and I’m impressed with how well you’re managing it – truly. Hang in there and do whatever YOU need to do to feel OK, even if that’s just being alone watching a video of Tyler. This is tough stuff and I’m so sorry you have to deal with it. Thinking of you.

I think you should probably just drink more wine.

Wow if this isn’t all truth, then nothing is. I love how I convinced myself to try a vegetarian/vegan diet because some friends had told me it puts Crohn’s into remission. Well, I got sickerrrr than I’ve ever been and haven’t been able to shake it ever since. I cannot eat salads and roughage and vegetables. That’s just me. So your post just made me laugh. Laughing is what I need right now! Thanks :) Here’s so making only 8 trips to the bathroom today instead of 18!

MK Fleming says: August 20, 2012 at 12:32 pm

I’ve not been myself lately and it’s been killing me too. But I don’t have Crohn’s. And I am an idiot for complaining about my life when my only problems are a shin splint and trouble breathing this ground-level ozone in Houston (i’d never heard of it before, either!). You inspired me to suck it up a bit, try mynew iinhaler, and dust off that expensive jogging stroller that now looks 5 years old after collecting dust in my garage for 7 months. I jogged 2 laborious miles this morning. Hardly the sort of mileage I’d log if I were still next to the engineer’s gate, but 2 more than I would have done if I hadn’t read your blog.

hey lady! you are pretty and smart and laugh-out-loud hilarious. i told becky you were my famous (!) friend. if i lived in nyc, i would be thrilled to grow roots in the couch with you. that’s all. :)
love – norm

It’s great how open you are about your Crohn’s, because other Crohnies appreciate it. I totally understand where you’re coming from. I saw someone above mention something about seeing a counselor, but have you ever considered finding a local support group through CCFA? Obviously talking isn’t going to cure anything, but at least you could get some empathy and talk with others who aren’t going to think you’re weird for being a Potty Queen (as my mom used to call me).

Also, I’ve had puppy fever for a good 2 years now. If you can afford it, you should totally get a puppy. Sometimes money can buy happiness!

Ali, I think you are so brave documenting your life. My heart hurts for you because you try to be so positive and your disease keeps trying to kick your @$$…you are stronger than Chrons!! I pray that your Chrons gets under control soon:)

Just do what makes you comfortable. As I am on the luckier and lighter side of Crohn’s (I haven’t needed medication for the past 15 years), I still feel the painful symptoms once in a while, especially while training for my second NYCM (yay for sweating buckets of water after a mile and sprinting back home for a potty session). I don’t think there’s anything to understand about it, you just have to make sure that things are not getting worse. My grandma was diagnosed with Crohn’s when she was 80 and she passed away last June because of it. She had developed her own system : a good French pastry a day for the last 4 years. I know it doesn’t sound that fun, but she had found a way to live with this f…ing disease.

Oh Ali I wish I didn’t know how you felt. I spent the weekend at an incredible music festival…or more specifically, in the port-a-johns at the music festival, courtesy of a seemingly never-ending UC flare that decided to really intensify as soon as I left the world of indoor plumbing and privacy. I was determined to tough it out and enjoy myself anyways, but it got to the point where I had to come home a day early and work on my own couch groove.

I am so sorry you have to deal with this, but I can’t thank you enough for writing about it. I just stumbled across your blog this summer, and it has really helped me deal with the sadness, anger, embarrassment, etc. that accompany IBD. I have pretty much managed to hide my condition from most of my friends and colleagues, but you have helped me find the courage to come out to my closest friends about my “gross” disease. (And yes, as much as I love them, they all know someone who was tried an organic diet, or acupuncture, or whatever and were cured). I really hope the new doctor will be able to help you and we’ll be seeing more upbeat posts soon, but in the meantime don’t feel as if you have to find some kind of silver lining in this situation – sometimes things just suck and I really appreciate how candid your writing is.

Thanks, as always, for writing this blog. Funnily enough, of all the responses I’ve gotten when I tell someone I have Crohn’s, the one that comforted me the most was “Wow, that SUCKS.” YES. It SUCKS. It’s nice not to feel belittled, like it’s no big deal and if you just did this one thing, you’d be magically cured. You’re allowed to whine and complain when it feels like your life is being literally flushed down the toilet, as long as you’re still able to make the most of the times when you feel relatively normal.

And I’ll be looking for you on ATRM.

If my friend came to me with this, I would say nothing. Just give a good hug and do whatever they wanted to do or talk about, or just do nothing together. So HUGS to you and I am virtually doing nothing, or something with you right now. (So not meant in the creepy way it might sound.) – Birthday Twin

I wish I could do something to help, but instead I will just tell you that you’re awesome and that your pancakes were the best I’ve ever had. <3

I LOVE your shirt tucked in, in the photo shoot pictures! Don’t question it :)

I picture you crossing the finish line of the NYC marathon, PRing of course, all while holding your brand new puppy high above your head (like Simba in the Lion King) as the whole cast and crew of So You Think You Can Dance cheers you on (and Brian and Taylor too).

I’m sorry! Words to live by: Fuck Crohn’s.

I`m sorry for how you feel but I think it is great that you rant. Don`t feel sorry about that because you got all the right! Never say I have this but the other person got something worse.
I still hope that things go uphill from now on. And I hope there will be a way to find a way of life without these nasty days or hours.

Ah, Ali, hope you’re feeling better. I tried to paste a really cool pic of my dog on top of an Alaska mountain but guess you can’t paste photos in blog messages, eh?
But seriously, get a puppy. I wouldn’t make it without my dog. She cheers me up Every. Single. Day.

Everybody judges, and everybody wants to share advice. Annoying to say the least. Especially when 30 people share 30 pieces of contradictory advice. I can only imagine how incredibly frustrating it must feel to be judged by how you try to manage the disease. Kudos to you for all your efforts to try and feel better. And more like yourself.

Also, TV looks good on you.

Hi Ali!

Long time reader, but this is my first time commenting. I can COMPLETELY relate to everything you just wrote, I had ulcerative colitis, and eventually had a total colectomy . And everyone is a critic, “you must be too stressed”, “if you’d drink aloe vera juice, I read an article that said that would fix it”, and so on…It definitely takes it’s toll mentally AND physically. I was on an obscene amount of prednisone for about nine months and had to postpone my engagement photos 4 times, bc my chipmunk face was out of control You have such a real and practical “I’m not going to sugar coat a poop problem” attitude that is SO refreshing. Keep your head up, girl :)

Meredith

Ali!!! Those with the disease can relate to everything you are feeling…seriously…because none of us can make sense of it. I’ve lied to stay in bed, I’ve felt like a failure 1000 times over for not completeing a workout, not finishing a project, and not being a “great” friend by canceling plans. I’ve listened to others try to cure me with their diets when really all my body could eat for days were cookies and I would feel the best I had in weeks. Part of accepting our disease is knowing we are our biggest advocates of our disease and we know what is best. I landed right where you are now two years ago when the magic prednisone pill did nothing for me, as it was the cure prior, and eventually landed me in the hospital. It was the first time I ever felt like it was okay to tell people that I needed rest to help heal this disease. It took a whole 7 months before I could workout, sad but true, AND I was forced to limit work and computer time. I was forced to do nothing and looking back, I couldn’t have done anything any ways. It is tough to know that with this disease we are constantly on a tipping point and one small error can send us to the hospital, but never truley believe it can get that bad. But it does, and YOU need to take care of YOU and that is what you are doing…key is to not feel “bad” because of it.

You have a huge support team and tons of people that love the heck out of you. Take care of yourself…your doctor sounds amazing and I am glad you have found him, but it will take lots of trial and error to find a perfect match of medicines and rest to get you back to the healthier you.

We know that you will have the biggest smile on your face no matter how NYC unfolds and that there will be many more runs in your future. Keep listening to your body and know you are doing all you can! Chin up friend!

tn

AliOnTheRun says: August 22, 2012 at 8:33 am

Your comments are the best, Teresa. I don’t know how you do this every day. You are such a rock star and it’s incredibly admirable. Thank you for the kind words, time after time, and for making me smile even when I really really don’t want to. Your insight and kindness are much appreciated.

Sending positive thoughts in your direction. The wheel always spins back…eventually.

I have no advice and no solutions, but I do hope you’re feeling like yourself again really soon.

Hi,my name is Tammy and I was diagnosed with Chrons and Colitis in 1999 after I had to have my daughter at 8 months pregnant,so they could remove 3 feet of intestine that ruptured.Crazy I know but I have been living with this for many years and gone through a few doctors.A food journal doesn’t always help because your body is not complying.I started taking one of the highest probiotics this year and have never felt this much relief,I have been a Yoga instructor and personal trainer.This disease does affect everything you do at times,I like to run but get affraid at times because morning is the worst time for me if I have problems that day.I can share some more stories that might help you if you want to e-mail at any time you can.The best advice I can give you is to start a probiotic as soon as possible.

I’m so sorry you are feeling this way. I really hope you start feeling better very soon and your new doc is helping you.
I kind of understand where you are coming from. I don’t have Crohn’s and shouldn’t complain with only having headaches and feeling fatigue. But every morning is a struggle and every doctor does some tests and then tells me it is stress related. It’s frustrating because I just can’t turn it off and i’m too worn out to fight it right now.

Don’t give up sweetie. I also “had” “symptoms” of an incurable disease. It is all but gone. Thanks to this, I promise.
http://www.amazon.com/The-Presence-Process-Healing-Awareness/dp/B007MXJARC/ref=sr_1_2?ie=UTF8&qid=1345503297&sr=8-2&keywords=the+presence+process

What a pain in so many ways. Take care and complain all you want. Great picture of Tyler in sunglasses.

I’m so sorry that things are hard for you with Crohn’s right now. I’m only a few months in to being diagnosed with the disease, and it is a daily struggle for me as well. I am using the strongest meds they could give me, because my doc said it is one of the worst cases he has ever seen. I have to give myself two injections at home, every month, forever. My husband does it, because I can’t. I still haven’t come to terms with this. Almost three months into treatment, and 6 months with a restricted diet, I’ve had minimal improvement. One of the worst things is how after a while, it seems like everyone else forgets about me having this disease and goes on with their lives, and expects me to do the same. Guess what, I’m stuck with this forever! I am sorry you are in pain, but at least I feel comforted that I’m not alone, and I hope maybe that will give you some comfort too.

OK, I’m not a doctor, but I know one thing for sure – you are WAY too hard on yourself! Being positive is great and I highly recommend it, however, we all have rough times. You are incredibly strong and will get through this. Just don’t beat yourself up when you have a bad day/week/month/whatever. You’re allowed :)

Let’s be real, nothing I post here can change your situation. But what I can say is that judging from the 75 comments on here, most people (including myself) appreciate your honesty and genuinely care and want the best for you (which I realize may be weird and creepy…….) So it’s okay to have a pity party. You’re entitled. Sometimes they’re even more fun than real parties. Especially when crying to a Celine Dion song.

Anyway, I hope the ‘roids start working soon. I look forward to reading about your recovery in the near future!

PS- I love your striped dress!

Aw, sending you a virtual hug! I don’t have Crohn’s, but have been dealing with stomach issues for several years now. I just started a gluten- and dairy-free diet and it’s been really hard, so emotionally, I’m in a similar mindset as you right now. Your doctor sounds great and hopefully you guys can figure out a good treatment soon!

I’m sorry to hear you’re still not feeling well. I can’t even imagine how tough this disease is. I just saw a patient in the hospital yesterday that had his second surgery for Crohn’s, really unfortunate and devastating. I know you probably don’t want another suggestion…but I just wanted to throw it out there that there are registered dietitians who specialize in working with Chron’s patients (and quite a few great ones in NYC). Your doctor might even have one that he works with – so maybe he has a referral. They often work as a team with physicians to help patients figure out what foods work for them and what don’t (and how different meds can affect all of it). You’re totally right that it’s a super individualized disease so a diet that worked for someone else may not work for you. Anyway, many of them take health insurance and it might be worth exploring!

This is such a conplex disease! I really hope you get to a better place really soon. I totally vote for a dog. They are tons and tons of work but so rewarding!

I think it is awesome you are going to be on tv. I don’t get cable, but I will keep you in my thoughts.

Also, I don’t think your boss thinks any differently of you , that you are in late. I am sure this wasn’t a surprise to them when they gave you the promotion. It is your hard work and your dedication which made them choose YOU! I hope you find the answers you need.

Sending prayers and thoughts your way Ali.

Ali– I know first hand that being sick and not being able to find a way to get better can be one of the most frustrating things to happen to you. I think you are awesome for sharing your struggles and I really hope you and your doctor can figure out what’s going soon. Good luck

I’m sorry you’re going through a tough time. Thanks for being so honest, as quite often in blog land it seems that people’s lives are perfect as they only share the ‘awesome, I’m so happy and fit and pretty’ stories, maybe that’s a true reflection of their lives, but its refreshing to hear you talk so openly and honestly about when life is not so great. However, I hope that it does get great again for you soon!!!

Jocelyn H says: August 21, 2012 at 12:11 pm

You have no idea how much I can relate to this post. It pretty much defines my January-July. I hope things start looking up for you (and soon!). It’s draining to feel so helpless and defeated all the time. You’ll get there – just wish I had more uplifting words but I know not much can help. Feel better, Ali! :)

Awww girl! I am sorry to hear you don’t feel well! I wish you all the best :)

(And not to be annoying, but have you ever tried essential oils? Like 100% pure essential oils? I know it sounds kooky, but it’s amazing what they can do. They actually cured my husband’s stomach ulcer, even after the meds couldn’t do it.)

All the best!!

Hi Ali, I am so sorry that life sucks lately. I don’t have Chrohn’s, but I do have epilepsy, which is kind of like Chrohn’s for the brain and can be equally frustrating. I know you are sick and tired of people suggesting things for you to try, but if you are at your wits end maybe you could look into Holistic options? I have not done this for my epilepsy but I’ve always wondered if it would help…

Regardless, I hope you feel better soon because life just is so much harder when your body doesn’t cooperate with you. Cute puppy pictures help though…

i will say that i will always ask how you’re doing because it’s my job to care about your mental health status. sorry?

and wine and cheese makes everything temporarily better. true words.

AliOnTheRun says: August 22, 2012 at 8:27 am

You’re allowed. Hugs for Sofia. (Hugs may be substituted with cheese as requested.)

Happened to be flipping channels last night and saw you make your TV debut. You were great in your dancing glory.

Travis seems kinda arrogant though… I was loving him on SYTYCD

I’ve had ulcerative colitis for 20+ years and IBS for about 3 years and it absolutely drives me bonkers when people tell me to cut out this or cut out that….and you’ll be cured! I know they are trying to help but um, it’s really not helpful! I’m trying gluten free, dairy free, and soy free right now…and I’m already not able to eat fruit and raw veggies so my diet is super fun! :) I’ll wish us for both to be well soon!

really kind of jealous that you can tuck your shirts in

I sent this post to my friends to say, “this is how I feel.” Thanks for saying what I don’t have the energy – and possibly the courage – to say.

I found your blog looking for info on Dr. Shah. I loved what you said about him. I saw him yesterday, and I’m really happy to have him. (I was already in the Sinai practice. The best, right? But my guy stopped taking any insurance. WHA?!?)

Anyhow, I had the cutest of little girls a few months ago. I was so healthy during pregnancy; I could be pregnant forever! But like so many folks, the Crohns came back after. I was hoping it would be gone for good. But I relate that having someone else to take care of helps to motivate. PUPPIES! BABIES! I’m super anxious to get healthy fast to be in great form for my funny and fabulous little girl.

I usually can get out of flare with antibiotics, but that’s not ok for the breastfeeding. And I want to avoid the steroids. (The Sinai practice hates them too.) It’s such a struggle. Similar to you, they want to try modest therapies before going full force with the drugs. Fingers crossed that the unpleasant delivery systems of the meslamine and hydrocortisone work. I’m not too optimistic.

Anyway. Rock on, Ali. You gave me a boost right when I needed it. You speak the ugly truth, but even in suffering you seem to be optimistic. You remind me that I want to stay that way.

And thank you google for bringing me here.

Grimness…you poor thing. Hugs…gentle ones so as to not annoy your colon.

Embarassed says: March 31, 2013 at 9:46 pm

Hi Ali,

I came across your blog tonight, and I love reading it. After a recent colonoscopy, upper endoscopy and pill cane I’ve finally been diagnosed… Crohn’s. I’m 23 and I have two girls under 3. There is so much information out there and so much is contradictory that I’ve quit researching. I’ve lost 35 lbs over the past few months and people keep telling me I look great! Then they ask me what I’ve been doing…… I’m too embarassed to tell them that I have Crohn’s disease. Any advice on this, or… anything? Thanks Ali. Praying for you to feel better!

I’m so sorry about your diagnosis. My best advice: Stop being embarrassed. The more open and honest you can be about your disease, the more understanding people will be. Why keep it a secret? I get that the bathroom stuff is considered embarrassing in our society, but it’s becoming less so as these diseases become so much more common. I know it’s all very overwhelming, but just take it one day at a time and do your best. Start talking to people, and I think you’ll find that they’ll respond appropriately — and will probably stop telling you that you “look great” (though that does still happen).

Embarassed says: March 31, 2013 at 10:14 pm

Thanks Ali, I appreciate the advice and the fast response. I think you’re right. Its so weird cause I can talk about my kids bathroom habits, but my own? I’ve always avoided it, long before Crohn’s. I feel like its even worse to talk about because I’m, well a female! Have you ever tried Epsom salts? All of a sudden my entire body is the sorest most painful its even been – I’m dying for relieve and the heating pad isn’t doing the trick.

superstar says: March 12, 2014 at 5:32 pm

I completely relate………….

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