I always think this hat is "really cute" even though everyone always tells me it's not. No one likes this hat, but I insist on wearing it. And then I see photos and I kind of get what they were all saying...it's not the best.

I Want My Life Back

Date: March 19, 2013 at 8:13 am- by Ali- Comment(s): 68

Well if that’s not the whiniest little post title of all time…

One thing people tend to tell me when I’m Crohn’s flaring is that I “manage to stay so positive and optimistic.”

The aftermath of last night's Nurse Home Invasion 2013. It was dramatic.

The aftermath of last night’s Nurse Home Invasion 2013. It was dramatic.

Maybe online it seems that way. It’s really easy to sit down and make a list of things that make me happy without harping on the negatives. Thankful Things Thursday, for example, comes naturally to me because I genuinely enjoy being a happy person. I prefer seeing the good over the bad.

But despite the claims that I “stay positive all the time,” I’m here to tell you that’s not always the case.

Things have gotten hard lately.

Again.

I’ve been on the steroids for a week now with no real improvement. The only change is that my fevers have gone down, which is great — see? appreciating the little things! — but it’s not enough.

I don’t feel super positive right now, and I don’t feel wholly optimistic.

I feel like I am back in that scary place I was in last summer, when I had been sick for so long and there didn’t seem to be an end in sight.

It’s been a rough go these past few weeks as my health has begun deteriorating. I had plans lined up for every night last week — dinner dates! fitness classes! Broadway shows! — and I had to bail on all of them. (Not true: I did make it to see Cinderella on Broadway Friday night, which was lovely.)

Notice that all fun plans have been crossed out and the only thing that remains is an appointment with the doctor. Fun times!

Notice that all fun plans have been crossed out and the only thing that remains is an appointment with the doctor. Fun times!

I can feel myself pushing people away. I won’t make plans with them and I don’t talk to them because I don’t like making my disease a burden on anyone else. When people ask, “How are you feeling today?” I feel like a loser for telling the truth, which is that I still feel terrible. I’m still in pain. I’m still in the bathroom every five minutes. I’m still having panic attacks every time I am more than three feet away from a restroom.

I try to bask in the little victories, like being able to walk a full avenue without having a meltdown and busting into the filthiest McDonald’s you’ve ever seen (28th and 6th…avoid). But the little victories feel few and far between, interspersed between letdowns, disappointments and more tests that don’t tell me very much.

My C-DIFF test came back negative, and my bloodwork shows that I’m nicely anemic.

I GET MY LAB RESULTS ONLINE NOW. Finally, medical world.

I GET MY LAB RESULTS ONLINE NOW. Finally, medical world.

That’s no surprise. A sketchball nurse came to my apartment last night to take my blood that’ll be sent to a sketchy lab where they’ll run mystery tests and determine the Remicade levels in my body.

This was not a great experience. My arm still hurts. If you followed along on Twitter, you already know.

This was not a great experience. My arm still hurts. If you followed along on Twitter, you already know.

It’s all a waiting game, and I’m tired of being patient. I want to be fixed.

Another thing that makes this tough is that this disease isn’t visible. I don’t really look sick, except for those few times I came into work last week wearing sweatpants and covered in a fever-breaking sweat. But if you see me sitting at my desk, I look like I do any other day. I don’t look sick. So if I choose to, I have to just tell people I’m sick, and that makes me feel like I’m doing a lot of whining and complaining. It would be easier if people could just, you know, feel my pain in tandem or somehow see that I’m ill. I don’t want to have to explain why I would fight the elderly for a seat on the subway.

I know this all seems repetitive. That’s because it is.

Unintentionally, I find myself looking at life cyclically pretty often. That was especially true this past weekend.

On Saturday, as I writhed around in pain and felt sorry for myself for not being able to leave the apartment, I thought about where I was on that same day two years ago.

I was in Washington, D.C., running the hell out of the National Half Marathon. My goal that day was to break two hours and I knocked out a 1:44:48 finish time (my half-marathon PR to this day). It felt effortless and amazing, and I felt so strong and healthy. Crohn’s disease wasn’t even on my mind, nor would it be for months following that day.

Fast forward to 2012.

The days change, but the sunrises look the same. (Don't plagiarize my poetry.)

The days change, but the sunrises look the same. (Don’t plagiarize my poetry.)

Right now, March 2012 and March 2013 are striking a shockingly close resemblance to one another.

Last year, I stood on the sidelines of the New York City Half Marathon, cheering on the hoards of runners from my perch at Engineers’ Gate, one of my favorite spots in NYC.

I felt sick that morning, I remember. Brian was running the race, and I spent the waking hours taking over his bathroom as he got ready. That’s fair, right? I’m the best.

But that day marked the first day of a Crohn’s flare-up that would plague me for the majority of the year that followed. That was also the day I decided to withdraw my entry from the Eugene Marathon and abandon marathon training until the fall.

Now here I am in 2013. A year later, but everything feels the same.

I thought this year would be a fresh start and the hell from 2012 would be behind me. I’d be happy and healthy all life long! Or at least for a while.

On Sunday, I stood in that exact same spot in Central Park, ringing my cowbell and supporting the runners blazing by.

A cowbell from the Manchester City Marathon, which was a very special day, and a cowbell from Team Challenge. Both give me blisters. I'm a very aggressive ringer.

A cowbell from the Manchester City Marathon, which was a very special day, and a cowbell from Team Challenge. Both give me blisters. I’m a very aggressive ringer.

Everyone PR’d this weekend. You know that already. The running world was filled with optimism, positivity and fastness. People had the races of their dreams.

And I felt so defeated, so angry and so jealous.

I wanted to feel supportive and excited. I put on my winter hat and my happy face!

I always think this hat is "really cute" even though everyone always tells me it's not. No one likes this hat, but I insist on wearing it. And then I see photos and I kind of get what they were all saying...it's not the best.

I always think this hat is “really cute” even though everyone always tells me it’s not. No one likes this hat, but I insist on wearing it. And then I see photos and I kind of get what they were all saying…it’s not the best.

But I couldn’t get excited. I couldn’t join the spectator masses and their “You inspired me to train hard and PR now, too!” chants.

Maybe that makes me a brat. I realize how it sounds. But I played a major game of “It’s not fair” this weekend and I’m letting it slide.

I just want what everyone else has. I want to wake up and feel fine.

I watch the sunrise and I feel sad because I miss running. And walking. And doing anything. Woe is Ali.

I watch the sunrise and I feel sad because I miss running. And walking. And doing anything. Woe is Ali.

I want to take the subway to work. I want to live without pain. I want to train for a race — meaning I want to have a full training cycle where I get to work hard every single day in pursuit of a lofty goal. I want to run. I want to PR. Not because everyone else is doing it, but because that’s what I used to be able to do, too.

I don’t know when I became “the sick girl,” but it’s not a job I’m interested in holding onto for very much longer.

I just want to be fixed. I want more of the good times. I want my disease to stop affecting the other people in my life.

Simple requests, really…

I’m heading to L.A. tomorrow for a few days for a conference. I think it’ll be good for me to get offline, get away for a bit and hopefully come back to less swollen intestines and a healthier perspective. Because no one wants to come to my lame pity party, right? Even if I make snacks?

So today’s the last day I’m feeling sorry for myself.

Tomorrow I suck it up and deal with it.

Today I can be frustrated just a little bit longer.

Tomorrow I start to move forward.

Posted in Crohn's disease and tagged -

68 Responses to "I Want My Life Back"

Julie @ sweetly Balanced says: March 19, 2013 at 8:25 am

Sorry Ali! I hope you feel better soon and I hope you enjoy your trip to LA!

Abbe Lew says: March 19, 2013 at 8:26 am

You’ll get through this, I know you will. And I’ll feed you loads of chocolate chip waffles.

Also, that hat DOES look cute.

You are such a good friend. I want all the chocolate chip waffles. And also that pasta with the Brussels sprouts. And also your foam finger.

Abbe Lew says: March 19, 2013 at 2:23 pm

I can give you two out of the three. And I’ll let you wear the foam finger on Sundays.

hey this is your blog – no one else’s – bitch and rant all you want.. i know sometimes writing helps me work through things, and although it may not necessarily make your intestines better, hopefully it helps you to feel a little better mentally.

enjoy LA, hang in there girl.

Well, to start with, I think you look good in that hat! I can’t pull off winter caps at all…I blame my big head, round face, and way too much hair, so I’m envious! ;)

I’d like to join your pity party, with or without snacks! My workload has blown up, I feel like I’m constantly letting everyone down, I don’t want to be around anyone, and I just had a miserable weekend in Rome which has left the left-side of my body screaming at me (yes, there was a race involved; I most definitely did not PR as I “aggressively fitwalked” over half…and it was a marathon, so that’s over 13 miles of walking. Mostly on cobblestones).

Can I bring beverages to the party?

You can absolutely come to the party. Bring water, because I can’t stomach anything else, and also bring some rolls of that pre-made chocolate chip cookie dough. See you soon! (But really, hope things turn around for you soon. So sorry you’re having a rough time.)

So sorry about dumping that all on you, but thank you :)

And now I could REALLY go for some cookie dough…

I think you should stop apologizing for being honest. :) You certainly don’t write a “WOE IS ME!!!!!” blog. You also don’t write a “LIFE IS BEAUTIFUL, ALL THE TIME!” blog. [Skillfully avoiding both extremes, *high five*!]

You write a real, honest blog about an awesome girl who happens to suffer from a sometimes-debilitating illness. You share your experience, as you know it – with those who have Crohn’s, and those who don’t. I don’t think that either group really wants you to sugar coat the experience. The more you write about the reality, the more we (the non-Crohnsies) can become better, more compassionate friends, co-workers, and family members to those who have “can’t see it but still suffering” illnesses.

Short version: Keep it up, have a good trip, hoping the LA sunshine chases away your inflammation!

Well, Holly, I just want to hug you. Thank you for the very sweet comment. I TAKE BACK THE “I’M SORRIES!” All of them! But I really appreciate what you said about how this helps non-Crohn’s people become more educated. I don’t really think of it that way, and that’s huge to hear — happy to help educate the masses!

I can’t believe that was two years ago, I remember your PR like it was yesterday! I’m still as impressed now as I was then. I was following on Twitter last night and it sounded terrifying. Why did they come to your apartment instead of you going to the office? And while my GI symptoms are nowhere near as bad as yours, I’ve been sick for a few months now myself. I wake up every single day in pain and I’m wondering if I should see a pain management specialist.. I know it is so tough to be at work every day when you feel so badly, and I also know it won’t last forever for you – I hope things turn around soon.

I think the hat is cute! I’m sorry you are struggling right now, I hope that you enjoy your trip and that you feel better soon!

Everyone is allowed to have time for woe is me, you more than deserve it! Good luck in LA and getting offline is sometimes SO necessary. I did it after I woke up a couple weeks ago to a call that I was laid off…and then getting some bad test results from the doctor a couple hours later. Take some time to regroup but know that you are human it’s not always rainbows and puppies (although pictures of puppies always brighten my day!)

And I follow you on twitter…last night some of those posts…I was scared for you yet laughing at the same time. Glad you made it through in one piece! Hope you are feeling better soon!

Ali, can I get an invite to your party!? I am sick of starting my day with stomach pains and an extremely long time in the bathroom. I hate that I went to my husbands family cabin with everyone and spent Saturday night in bed with frequent runs to the bathroom hoping nobody would notice or comment. I hate the look people give me when they find out I am dealing with Crohns pain. And then I dislike my thoughts because they are just being nice. I am sick of being the sick girl too. This disease sucks. We walk around feeling this pain and holding on to this worry while no one even knows. We look fine, but we are not. I would say that a few pity parties every now and then are allowed. Hang in there and thank you again for always being so open and honest.

Wonderful post, Ali. It is totally understandable that you’re feeling that way! Thinking cyclicly, then this too shall pass. Hopefully very soon!!

Your honesty is refreshing. And you’re allowed bad days. Keep writing through the good and the bad…you “keeping it real” is what makes you an amazing person to follow. And — when this passes (which it ultimately will) — you’ll probably like being able to look back at these posts. Hope today is a better day.

I’m sure LA will do you good! The weather will be kinder anyway…I’m so over winter.
I work at Eataly (in the offices) and if you ever want to meet for a glass of wine and any kind of Crohn’s-friendly Italian food, if you think that would cheer you up, let me know! :)

Sorry things are so rough right now. It’s hard when you’re not feeling well to keep your chin up and I think that’s sometimes okay. Sometimes when things suck its okay to just say they suck I hate that things are like this and I’m not going to pretend things are okay because they’re not. I think as long as you don’t consistently dwell on the bad it’s okay to admit things aren’t good.

Crohn’s is a jerk… I hate its face.
Nasty public bathrooms are also jerks.

Screw being “inspired” by others or whatever. If shit sucks, it sucks. No use putting a spin on it. There is nothing WORSE than seeing all sorts of good things happening to people when everything around you is awful. First step to feeling better about that is admitting it.

Smash a few things, drink more, burn an effigy (just not indoors on that last part)!! Otherwise that frustration is just gonna boil over.

IT’S NOT FAIR.

Loud and proud. Death to all the #runbrags.

Maybe I should adopt the title AngryBlogger for a while. Could be a fun venture…

I think the hat looks really cute on you! My head was not made for hats, I always look like an evil elf when I attempt one.

I don’t think anyone expects you to be Happy Party Ali all the time, nor should your blog posts be that way. I hope that soon things start to get better for you though!

I’m so sorry you’re having a rough time right now. But here’s a lesson I’ve tried to learn over the past year-ish – 99% of the people who ask how you’re doing actually care about the answer, or they wouldn’t ask. And since they care, you aren’t burdening them. Its easy to worry that thats all you talk about, or that no one wants to hear less than glamorous details about your life, but I’m finally figuring out that people don’t expect you to be happy all the time and want to be supportive when you need it. But regardless of how you handle this, I hope that the steroids kid in soon and that you’re back to running. I’m pretty sure that California will help – how could sunshine, beautiful famous people, and endless stores selling self serve froyo not?!

You be frustrated. Its unfair to be dealt the Crohns hand in life … frustration is part of the game. Your honesty about this disease is what the world needs to hear, and what I want to hear as a fellow Crohnser. Its not all roses and sunshine and I love that you feel that way too.
With that said, its only up from here. It really is. Come this fall I see you on the PR train having had a fantastic training season.

<3 Thank you. And you know that I am beyond psyched for YOUR PR! Though I must say, I found it to be completely unsurprising ;) Very happy for you and hope to be trailing you during those long runs this summer and fall. Come home soon!

I don’t think you ever have to feel bad for thinking something isn’t fair or feeling sorry for yourself if you’re keeping perspective, which you always seem to do, Ali. What you’re going through sucks, there’s no other way to put it. And when things suck, you get to feel bad for yourself and get sympathy (and food delivered, hopefully). It’s one of the few perks of things sucking!

I’m sorry you are sick, but I am right there with you, different sickness, same frustrations!! I have my own pity parties here in VT :)

I think it’s awesome that you’re using your online space exactly the way you are. When you feel better and look back at these posts when things were hard, I hope you’ll see yourself as nothing but strong, and that your ability to remain positive inspires others.

You are a beautiful writer… that is why you have readers. Because you are articulate, thoughtful, and funny… and never ever have a typo. Not many people have those skillzzz. Beautiful post. Fell better.

Hugs lady!!! I’m so sorry that son of a biotch Crohns is messing with you. No need to be positive all the time :).

Let me know if you end up having time out here in LA and want to grab coffee /froyo / booze (or go on a run if you’re feeling better!).

As soon as I knew this trip was happening, my first thought was, “I have to run on the beach with Margot again!!! INTERNET FRIENDS!!!” There’s a slight chance I’ll be able to do that Monday morning before I fly out…but it’s going to depend on what the stomach situation is like at that point. I’ll text or email you!

Ali, you have every right to feel frustrated and upset, this disease SUCKS!! because you are feeling so down, i will share a little story that happened over the weekend that i almost told you about earlier but it was so mortifying that i thought, well, maybe not. but here goes…so you know how i mentioned that i too have been going through a flare up? well, saturday morning i was on my way to flywheel, my absolute FAVORITE addiction in the world, and totally got sick on the way, and of course it happened in like an instant, so i was just beside myself and started crying! i had a complete and utter breakdown and pity party and just started crying like a baby in a dirty diaper! i called flywheel sobbing and told them that i had just gotten sick on the way down to the class and they didnt care, they’re like, “sorry, hope you feel better, but you still lose the credit.” so that made me cry even more. when i got home, my hubby felt so bad and did two of the sweetest things. first, he called flywheel and yelled at them that i had crohns disease, (it still didnt do any good but it was so sweet of him to stick up for his dirty diapered wife) then he told me that i needed to be more like Ali and to walk where i will know i can dart into a bathroom if i had to! (i had been walking down Park ave because there are less people then on lex or 3rd but of course, on park ave, there are no starbucks or anything else to run into!) Anyway, i hope the rest of your week gets better for you in LA and that you start to feel better soon!!!! Thank you for being you, you are the only one i can tell these things to whom i know will understand!!

Aw… I’ll fling positive vibes your way! (No, really, flinging makes them stick. Vibes are a lot like pasta.) I hope you feel better soon. I think the LA sunshine will definitely help and you can totally bring your hat because everyone knows that the a.m. marine layer is chilly. The hat is totes cute and you’ll fit right in.

I can feel your pain through the internets and it makes me ache for you. I hope Dr. Hottie gets to the bottom of this soon and you are able to have a glorious spring and summer and fall full of amazing runs and races.

So sad for you!

I’m a new reader and after reading this post, I had to comment. I was diagnosed with Crohn’s when I was a freshman in high school, and I know exactly what you mean about the disease not being visible. People don’t understand Crohn’s Disease and how it affects people who suffer from it. It takes a lot of bravery to write such honest posts about how the disease has affected you and if that means putting a little negativity out there that’s okay. Crohn’s Disease isn’t pretty and it’s more than just spending a lot of time in the bathroom. Your blog is inspiring to people who have Crohn’s and informative for people who don’t. That will still be true even if you sometimes write about not so optimistic moments!

:( You can make it through this! Remember it’s the moments in life when we are at rock bottom that often become our defining moments. It’s how we handle ourselves in these moments that determine whether we will look back and classify the moment as the beginning of the end or a new beginning.

There is only so much you can do with your body revolting against you, but please try not to lose hope! I can only imagine how angry and frustrated you are with this stupid disease. Try to keep your head up, Ali. You know you have a whole community rooting for you.

I love reading your blog, and you have every right to complain. I hope you get better quickly! I know how hard it is to hear about everyone else’s PR, etc, whether you’re sick or just injured or just had a bad race when everyone else didn’t. But you will have that opportunity to train hard and I bet you qualify for Boston! Keep writing, we’ll keep reading.

Beth @RxBethOnTheRun says: March 19, 2013 at 2:10 pm

Listen! Never feel like a loser for being honest. If someone asks you how you are feeling and you feel like shit, then say you feel like shit! You had a crap year last year and it sucks to feel that way again, so go right on and complain about it! Do you want me to bring you some “granola bars?” What will cheer you up? This sucks. When you want to run and you can’t and everyone else is seemingly having the best training and race season of their lives, it sucks when you can’t join…so you go right on and whine all you need to. What I love most about this blog, and the reason it was my first blog and still my favorite, is that you are always honest! Keep your chin up! Think of how crappy you felt at the beginning of 2012 and how amazing you felt in Manchester! You will get on the other side of this again. Promise! This pharmacist says so! Hang in there, friend! Let me know if you need anything :)

Those sunrises/sunsets are gorgeous! What a view you have. So glad you got to cheer on the runners, too. May I also say, based your calendar, you have wonderful penmanship – a skill I’ve been working on since 1995.

Feel better! I’d come to your pity party any day- because even though you say it’s a whiny post, your optimism and general sunny outlook shines through! Rooting for you!

Ali I am so sorry. You’re allowed a pity party – sometimes that’s the only way to get on the other side of your frustration. To dwell in it, feel it, and then move past it.

I know how irritating an invisible illness can be. “Looking” healthy can make you want to scream. It’s not that I want to look sick, or that I want pity, but on the days my CF is getting the best of me, I’d at least like to not have to explain why I’m in a bad mood. It’d help if they could see it.

I hope your time in sunny California helps. Hugs.

First of all, I am so so so sorry for what you are going through, I truly can’t image.
Secondly, I wanted to share that your blog brings attention and education on your condition better than any source I have seen!
I lived with a friend with Crohn’s for two years, and it wasn’t until I began reading your blog that I began to grasp what she goes through.

P.S. I am super jealous of your exceptionally neat handwriting :)

I hope your conference is just what you need!

I was wondering if you weren’t feeling well again. I hope this is short lived. I will say, I do think you look under the weather, your dark circles make me think so.

I love your hat and partially because I own the same one, or one that looks the exact same. You rock your hat, although maybe the foam finger should go. ;)
Sometimes life is not fair, and sometimes it sucks, and it’s ok to say that. I get seeing the postive, but sometimes ya gotta say Screw It too. Safe travels.

I have to be honest, blogs that are kittens and rainbows all the time are incredibly exhausting and frankly make you feel so awful about your own life, it can be frustrating to read them.

Write what you feel and be confident those of us who love what you write and love your honesty, whether we know you or not, whether we are “friends” or not, will stick and read through better or worse. Because real life is relevant.

Whatevs, you can feel whatever you want for as long as you want. Just keep your head high, bitch if you have to, and remember “they” (whoever they are) only deal what they know you can handle.

Sending <3

Ali, I think your positive attitude is quite contagious. It’s ok to wallow every now and then. Nothing is perfect, including our health. Hey, you may not be able to run or walk, but at least you can marvel at the beautiful sunset.

-Erika

I get what you mean about wanting to look sick as well. Your illness is prob one that many don’t understand. Hang in there. It sucks. I think you handle it a hell of a lot better than most would. But I think the hat looks cute!

2 things:
1- you have EVERY right to complain, it sucks being sick! Even more so when people can’t see you’re sick!
2- I think your hats cute but if you want I’ll knit you a new one

First of all – when I get blood drawn, I pass out on the floor – i have to worn techs beforehand, and I scared some newbie when I told her I tend to pass out -oops. So kudos to you for remaining upright! Second – you have every right to complain! I would be moaning and groaning a ton more than you (have you thought about carrying a training potty around with you!? hah). I think your positive attitude and personality is contagious – I’ve been having a crap morning and thought to myself – “I’ll click on Ali’s blog,she always makes me smile!” Hang in there girl – I hope your trip gives you some downtime — here’s to you feel better like yesterday! :)

You have a great attitude.
I have a couple of friends with Crohn’s and it sucks.

I hope you feel better soon!!! I can’t imagine going through what you’re going through. Central Park will be waiting for you when you’re feeling better.

Monica C. says: March 20, 2013 at 7:46 pm

I can totally relate to a lot of what you’re saying! I have rheumatoid arthritis and have been going through a “flare” for all of 2013. I completely understand what you mean when you say people don’t realize what you are going through. I look “normal,” but people don’t realize that my pain wakes me up in the middle of the night and that I can’t open a water bottle. I’m about to start a short course of Prednisone and I’m hoping it helps. I registered for a half next weekend but I am probably not going to do it. I’m just thankful that this did not happen while I was “seriously” training for a marathon.

Hang in there. Here’s hoping that our symptoms become a thing of the past! In the meantime, I am still inspired by how you kicked ass in your last marathon (my goal is also to break 4 hours).

You absolutely should not stop talking about how crummy it feels to be crummy, if it makes you feel a little bit less burdened or alone. I am all for moving forward, but sucking it up doesn’t mean sucking it in. You have a ton of supporters out here in Blogland, and we can take it, even if you’re afraid that your real, analog friends can’t (and they can probably take it, too).

Support & sympathy! Have fun in LA. Visit Scoops on Heliotrope. Hang in there.

I love reading your blog because you are so honest.. I love hearing about the good, the bad and the ugly! I really hope things start to improve for you and think that you are coping amazingly.

I want my life back too! Am at a total loss – received bad news over the weekend: stress fracture on the left tibia/lateral calf. I did everything right (or so I thought) – low mileage (I stick to shorter runs hence training runs don’t go beyond 20-25km each time), not much speed work, cross train, don’t drink or smoke, avoid processed stuff, meat (I’m vegan), yoga, pilates etc. Guess this was one of the random “bad” things that happen. Blood work came back, so it wasn’t a pathological problem. Sorry about being negative Nancy on you…but I needed an outlet.

*hugsz*

You’ve got this Ali. It sucks and is horrible and I wish a million times over you didn’t have to go through this but you are strong. So strong, I admire you so much for your strength and I think a little California sunshine is going to give you just the boost you need. One day at a time and what doesn’t kill you makes you stronger, right? :) Good luck!!

Hi Ali.. This is the second post of yours I have read now as a cyber stalker (and I do feel a bit guilty about that, sorry..) BUT I am glad that I can.
I was diagnosed with Crohn’s 3 years ago when I was rushed to hospital near death, resulting in some lovely bowel removal. Since then I have had lots of up’s n down’s with tum situation, desperate dashes to the toilet in the middle of service ( I manage a restaurant), running into the bushes when out on walks with friends and having to use strangers bathrooms. It’s been fairly amazing, but still so far have not had the return of the pain. Not like there was. I do get the whole agony thing before bowel motions but it’s not ALL the time.
Anyway.. the reason I am writing in the first place, is despite the fact that I felt i was getting better (except for fatigue) I had to have a procedure for fistula’s this morning. I was hoping that if you have had any experience with the lovely things you might want to shed some light on it for me?

Have fun in La. And hope you feel better soon!

I think I’ve read every post you’ve ever written on this blog (I’m not a creep I swear!) and I keep coming back because I honestly appreciate everything you share – if you’re feeling terrible and want to talk about it, you go right ahead. Your friends will still be here and will hopefully be able to lift you up, if even the tiniest bit. I’m sending you lots of love and sending stupid Crohn’s lots of hate-filled-go-away-forever vibes!

Also, my job involves ringing cowbells on various occasions, so if you want some tips for avoiding blisters, I’m your girl. No big deal, but I’m basically a professional cowbeller.

Keep fighting the Crohn’s it will eventually get better.
I have some friends that are fighting this and a good positive attitude is the best medicine.

I read a lot of blogs, and never comment. However, this post struck me and as my first time commenting EVER, I have to tell you that there are plenty of readers out there who are so in awe of all you do. I can’t imagine having such a debilitating disease, and you handle it with grace. Hang in there, and I truly hope you feel better soon.

Wow, has it really been 2 years? Time flies. Took Angel’s class the other day in a long long time and thought of you.
Sending lots of hugs. Hope you feel better soon.

I know it seems selfish and whiny to talk about your invisible illness, but please know that there are people out there *like me* who really appreciate you sharing your experience and emotions associated while you go through this flare. When IBD strikes, you can’t ignore it and pretend that life is all sunshine and roses, because the reatlity is that when you ignore it, you poop your pants. Not sorry for being so frank. You’re doing the very best you can. This disease is not you, and I am so inspired by how well you handle it. Any no one is going to judge you if you decide not to “suck it up and deal with it” tomorrow. Tomorrow you’re allowed to be frustrated too. Thanks (again) for making me not feel like I’m the only person in the world who knows what I’m going through!! :)

You really paint having Crohn’s disease very accurately. All the mental stuff that goes with it, I totally understand. Hope you feel better soon!

Ali!!so so sorry to hear your so unwell.my mum has CD and has for a very longtime (before i was born) so I know how horrid and absolutely debilitating and cruel it is. I also understand the constant worry about Where the toilet is etc and how brave you are jus to leave you’re apartment letter lone go running.your a brave girl and WILL get thru this.as my mum says “nothing lasts for ever,not the good or the bad” x big love from the UK xx

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