We’ll talk about running again very soon.
But first, some Crohn’s talk. Feel free to fast forward as desired.
In theory, I had the perfect Friday night.
I went out to dinner with coworkers at The Smith, one of my favorites, and then went to New York City Ballet’s production of The Sleeping Beauty. The food was good and the ballet was amazing. Lincoln Center is one of my Top 5 Favorite Places in NYC, so get me there and I’m a pretty happy Ali.
But in the reality that is “My Life With Crohn’s Disease,” the night was more painful than perfect.
I don’t know what happened. All week I had prided my body on getting stronger, feeling better and moving the latest flare-up into the past. Things were feeling good! I was back on board public transportation, I was getting through the workday fine and, as I’ve obsessed sufficiently, I was back to running.
I had planned all my meals for the week, I was getting ample sleep (or as close to “ample” as I think I’ll ever get) and I even went to a yoga class.
No complaints.
Until Friday.
It was just the usual “Holy hell I’m in so much pain right now and I don’t care how rude it is to leave in the middle of Aurora’s Rose Adagio, I need to use the bathroom now.”
I had to do the “bathroom bolt” (well now, isn’t that clever?) multiple times during dinner — because that’s not at all embarrassing when you’re out with people you work with — and as soon as I walked into Lincoln Center.
Then, during the 2.5 hour ballet, I sat there in pain and discomfort, thinking less about the pirouetting onstage and more about when I could make my frantic exit. (The fact that press seats are always aisle seats is a constant blessing in my theater-going life.)
I didn’t sleep well Friday night because the Crohnsing continued, and Saturday morning wasn’t so good either.
Now, it’s Monday (you’re welcome for the reminder), and I’m finally feeling like I’m back on the “time to get healthy” track again. So maybe it was just something I ate. Maybe it was Crohn’s just popping back in for a casual reminder that it’s a chronic thing that won’t actually ever just leave me alone.
You fellow Crohn’s/colitis/IBD/IBS folks know what it’s all about. You know the embarrassment, the pain, the general inability to plan your life.
I can’t give you advice on which medications to take or which foods to eliminate. And I swear to Remicade, if you leave a comment about how I should really eliminate gluten or go Paleo, I’m banning you from the comments. Love you.
As comforting as it can be to talk to other people who share this disease, it can also feel unnerving sometimes. There are people who are my age, leading similar lifestyles, who can eat all the corn in the world and wash it down with a bucket of fried chicken and three cocktails. There are people with Crohn’s disease who can run incredibly high mileage and never feel fatigued. And, on the flip side of course, there are people with Crohn’s disease who can’t get out of bed (or the bathroom) at all. They are tired, their joints ache, everything is just really bad.
I fall somewhere in the middle of the spectrum. Even though sometimes I feel like I’m dying (really), my doctor has diagnosed my case as “mild to moderate,” though upon my hospital visit and all that close-up viewing of my insides, he deduced that the disease is “severe in the sigmoid colon.”
My point — I really was getting to one — is that I have no medical advice to offer you. (And if I did offer you medical advice, why would you take it? I’m not a doctor. Be smart. Don’t take medical advice from people like me.) This disease is so personal and each lifestyle, each method of treatment, is so different.
This go-around, my flare-up was treated by a combination of antibiotics and Remicade, and while I’m sure they eventually kicked in and are getting this disease to calm down for the time being, ultimately what made this flare easier than ones in the past is that my mental training was spot-on.
At times I think this disease is all in my head.
I know it’s not. I have proof that it’s in other places than my head…
But when I think about being sick — when I think obsessively about where the closest bathroom is and whether I’ll have time to use it before my next meeting or appointment — I panic. Being in transit is the absolute worst part of being sick. If I’m sitting in the office, I’m mostly OK. When I’m at home, I’m comfortable and pretty much fine. When I have to move around, though, be it walking to work or taking the subway, I just completely freak out. Every time, whether I’m hustling across the street or across town.
So as much as I can give credit where it’s due to Remicade and other drugs, I’ve also gotta give it up for Bejeweled Blitz.
Because my best tip for dealing with a Crohn’s disease flare-up is to stay mentally distracted.
It’s hard. It really is.
But the less I think about having to run for the bathroom, the less I actually have to do it.
This works when I’m on the subway. I play countless games of Bejeweled. Many high scores have been accumulated while on the Downtown 6. I just focus on the game and lining up all those little tiles, and I’m not so focused on the churning in my stomach.
It works when I’m running, too. If I’m out and I’m thinking about whether I’m closer to the tennis court bathrooms or the Great Lawn bathrooms, I’m inevitably going to need to sprint to one of them in pain. This is a pretty regular occurrence, unfortunately.
If I can just zone out, though, and listen to music…
…and think about anything but my disease, I can cruise along for a while, and usually I can tackle a few miles without even realizing that I didn’t need to stop.
I know it sounds easy and trite and maybe even a little stupid and useless, but I assure you, more than any diet or meditation practice, just training myself not to think about being sick has made me feel less sick. Give it a shot.
ANYTHING TO ADD? Another thing that works for me is sitting down whenever I can. If I’m flaring and I see an open seat on the subway, I will fight you for it. Unless you are an old person. Then you can have it. I’ll just sit on your lap. No problem.
39 Responses
I’m new to this IBD world and SO thankful to find this blog! I didn’t really know what a normal flare was until reading this and the comments! It’s so great to know I’m not the only one! My friends, family and co-workers have been so understanding, but it’s so “comforting” to hear from fellow sufferers! Please continue to blog/post – you’re helping this new sufferer more than you know!!!!!
Hi –
I just wanted to let you know that my 10 year old son was just diagnosed, so I’m just trying to gain an understanding of what Crohn’s is. Your blog really brings the condition to life. And I love your attitude. You inspire me!
I totally agree, I’ve learned that mentally I play I huge role in controlling my pain instead of drugs (pain meds) but OMG it’s SOOO hard but I do it anyways besides the pain meds don’t work, by me keeping my mind busy keeps the crohns under control, Crazy shit but it’s true
I have been suffering with crohn’s on and off for about 24 years. I never knew I had it until 3 years ago when I was diagnosed by a gastro doc and a colonoscopy. It was then, when the light went on in my head saying “Oh that’s what you have had for all those years”. I have had a flair up for probably over a month now, maybe longer. Anything that enters my mouth including clear fluid comes out. I am in the bathroom at least (NO WORD OR A LIE) 20x’s a day. I can’t leave my house to drive my daughters to the bus stop just down the hill. I can’t take them places or pick them up without having to pull over, sometimes more than once. My butt hole is on FIRE and I am miserable. I have been pooping (PEE) blood for quite sometime now. I have a follow up tomorrow and am petrified he is going to bitch me out for not calling sooner. I hope that you are feeling better and your methods are working. I enjoyed you article. Thank you!
Laura
Reading this story has made me feel relieved!! It’s like you’ve written exactly
What I’m feeling and going through. I have moderate to severe Crohn’s and after 12 months have only just started to feel like I have my ‘normal’ life back. I know what I can and can’t do obviously but now I feel like I can go out without needing the bathroom the whole time I find myself thinkig about it less, and like you said that is the best cure!!
Also. just wanted to add thank u Ali i needed to feel like someone understands my pain
Ok i read a lot of people’s comments on how chrons has completely controlled them i feels that way i am now currently having a flare and i am in so much pain it consumes me i have tried. pretty much the foods the medicines the exercise i also have rhuematoid arthritis (spelling maybe wrong ) i am in constant pain any suggestion
I do not know you but I share the same disease with you. I worry about the same things and it frustrates me because my fear always gets in the way and when I’m out at an event I don’t enjoy iy because I stress over where’s a bathroom. I need to cope better with this. Right now I’m flaring and feeling down.
This post made me so happy to read. As a fellow Crohn’s patient and New Yorker, I always feel like the subway is enemy #1 when I have a flare-up and am trying to get through my day. I realize this post was from a while ago, but thanks for sharing your crohn’s woes. It just makes me feel less crazy about this whole thing. Also, if I had a dollar for every time some I know suggested I tried cutting gluten out of my diet to make me feel better…
I just wanted to say thank you about your comment on the diets we Crohns patients have. My friends are always saying in so many word it’s my fault bc I the food I eat. By the way we eat almost all organic and we cook at him 3 meals a day 6 1/2 days a week. I also stay away from foods that I know will make me sick. There is nothing more disheartening than to hve people point the finger back at me as if I cause this issue. Remicade has changed my life as well. After 12 years together my husband and I had our first child this year thanks to Remicade but I still have issues. I am currently have a vengful flare and it is my 30th Bday but apparently chronic diseases don’t have holidays:) thank you for your Blog you made me smile today
Hi Ali, I don’t personally have Crohn’s disease or colitis, but a few weeks ago, I had a poisoning experience with similar symptoms. It put me in a scare as I was told it was possible that I had it. I decided to research what the diseases were and what to expect. In the end, I didn’t have it, but I have much more of an awareness of the disease. Thank you for sharing and I hope you are gradually feeling better. And if it helps, I did read one article about a man who overcame his disease. Here is the link: http://dranh.com/arimeisel/
Ali, thanks for including people with IBD and ibs. I have celiac disease and also microscopic colitis. The celiac disease is under total control on the gluten free diet I maintain. The issue is the MC that I have been dealing with for at least a year. And I love to run! Did NYC marathon in 2011:). Loved it! Love NYC. I went to NYU and love running around Central Park and know all the bathrooms there as well. And in Charlotte where I live and run, I know where the bathrooms are and the porta johns. Hope you are feeling better!
there should be an app which shows you every toilet near to where you are (actually, if something like that exists, please tell me!) – and as a uni student, one of my biggest fears is suddenly needing to use the toilet in the middle of a lecture, and having to make my whole row stand up to let me out.
although i have IBS and not Crohn’s, i still agree with you – distraction during a flare up is the easiest thing to do, it takes your mind off the pain and embarrassment of it all!
hope you get over this soon 🙂
Hope you’re feeling better this week Ali! Go away Crohn’s, we hate you!!!
Bahah “And I swear to Remicade …” This really made me laugh out loud. I think I’m going to start swearing to Remicade. That drug is a miracle worker. Anyway, I hope you continue to feel better! Mentality really does play into it 🙂 And just because of some of your pics, I’m sharing this video of the cutest goat ever. I’m pretty sure I’ve watched the last 15 seconds a few dozen times already. http://www.youtube.com/watch?v=5IuRzJRrRpQ
oh dear, as a colitis sufferer, this sounds all too familiar. And yes, it helps to stay distracted, but it IS a mentally draining disease. I have no advice to give, but you are definitely not alone. xo
I can only echo the sentiments of many on this comments board. It’s just nice to know you’re not alone with these issues sometimes and that some people really can understand what you’re going through.. so thanks!
I actually don’t have stomach problems so I can’t relate at all, although I feel a whole lot of empathy for people who do. Hang in there, stay strong and distract yourself as much as possible. Laugh a little too and fix your one hand on Warrier pose. Just Kidding, I did yoga for the second time last week, and it takes every ounce of my own will power not to bust out laughing when everybody else is ommmming. Real mature, I know.
my 5 yo is having some stomach probs lately, I am currently eliminating dairy to see if that is the problem, the probiotics are really helping him
Oh my goodness this is not trite at all! Its sound, sage advice. I feel you … I joke with my husband that I wish I had a potty button that is like the easy button. One press and a toilet appears. I would be so much calmer at all times. Side bar that my husband is a saint for having these sexy conversations with me! Oh the glamour of this disease. Feel better soon!!
Boo. Here’s to a speedy recovery this time around.
I’m sorry to hear about all these frustrations. While I don’t have any of these conditions I appreciate you sharing your story. Maybe I can offer you another fun game to keep you distracted? I recently became obsessed with Candy Crush- I play it on the LIRR and subway- makes the time go by so fast.
Here is my chronic illness. I have chronic migraines (since I was about five years old), I have them mostly on a daily basis.
I have a great doctor and great meds (Praise Jesus for pharmaceuticals) and I do and always have functioned as a perfectly normal person getting my kids to their tasks, running the world and generally being happy. But more than 50% of that time…I have a migraine. I have just learned over the years how to manage it.
I believe we all have our cross to bear, to use an overused phrase. Some people have learning disabilities. Some people have migraines. Some people have Crohns. Those people learn what they have to do to live happy WITH their situation and not fight it.
I have had so many people tell me THEY get migraines, THEY are on the same meds, I SHOULD go gluten free or dairy free, or sugar free and by the way it will all go away as I get older! We all have different medical issues, how about you don’t presume to diagose and treat me. How about you simply empathize and move on. Thankyouverymuch.
About every six months I spend a day having a emotional “why do I have to live like this” day. I have learned to allow it. We are strong and beautiful and amazing and we deserve to occasionally melt. And the next day go back to “running” the world.
I had a friend with chronic migraines. Turned out they were caused by hole in heart. Took over 20 years to figure it out. Might be something you could look into if you haven’t already.
“if you leave a comment about how I should really eliminate gluten or go Paleo, I’m banning you from the comments. Love you.”
BEST EVER. TOTALLY love this. I hope you stick by that because the people who love to give those with Crohn’s dietary advice… bah. Banning is too good for them, heh.
Sorry you had a flare. I hope it’s a long while before you have another. And congratulations on the high scores in Bejeweled. Anything that works for one person makes me happy, whether or not it helps anyone else. Because ya, it’s very personal.
Sorry to hear you had a tough weekend crohns wise. I’m dealing with a flareup right now too and had to do the “bathroom bolt” this morning while my kiddos (4th grade) read quietly while waiting for me to return.
PS-Love the tweet re Celine Dion (I may be slightly obsessed!)
I also feel your pain. It truly sucks to have that pain and feeling when you need to go and have NO Idea if the bathrooms are unlocked or not. I pretty much know every bathroom on the national mall that are open and when. I don’t mean to make a joke but can you seriously do a post of best of/locations of bathrooms in Cetnral Park? When I am up visiting thats my happy place to run and I have no idea where the bathrooms are and worry that i will not be able to find one in time! I can see you making a funny (yet real) post for everyone out there who suffers and needs the best bathroom locations when in NYC Central Park!
Thank you for this post… seriously. I definitely needed it and related to all of it. I too feel like when I’m happy and not stressed (basically just going about living my life without dwelling on Crohn’s) I am so much healthier. I tend to distract myself via Ipod or going to the gym. Everytime I go to the gym or run when I’m “sick”, I always leave feeling better than when I started. I used to think it was because “Well I worked out duh” but now I’m beginning to realize it’s because I’m happy, distracted, and pushing myself to see that I’m more than my disease.
As an IBS sufferer (although my case is not debilitating and definitely nothing compared to what you go through), I totally understand the frustration of having people give you useless advice because they assume the same thing works for everyone. If someone tells me to give up dairy one more time, I will throw something at them. However, ironically, I’m in the middle of a gluten-free experiment and it seems to be going well. But everyone’s case is so individual, there’s no way of knowing what will work for someone else!!
I have IBS and sometimes spend a crazy amountoof time and pain in the bathroom. My advice is to take your phone or book in there with you to cocentrate on something else while your body tries to do its thing. Because things just go so much faster that way.
I hear you on the not thinking about it. I have undiagnosed stomach issues (in the process of figuring it out) and when I worry about needing to use the bathroom on a run it just makes it worse. I also think there need to be a lot more public bathrooms…like a lot more
seriously… this post couldn’t have come at a better time. I emailed you a few months ago about my diagnosis (and embarrassingly when I looked back, I was so much of a newb I misspelled Crohn’s… hahaha) & since then it’s been and up & down sort of battle. my meds make me drowsy and don’t make anything perfect, but then I think back to before when I would buy a new pack of immodium every two weeks (that should’ve been the first red flag?)
and OMG I swear if one more of my friends says I should go gluten free or dairy free, I will punch them in their small intestine and see if they feel my same pain. seriously Ali, you ROCK and I’m so glad you took the time to address this today. Okkkk enough of my rant haha!
First, I love Bejeweled – talk about a way to keep my mind off whatever it won’t stop churning about.
The only thing I’d add about Crohn’s is to be patient with your loved ones who have issues. I love my family and friends because they are willing to tolerate my sudden ‘bathroom bolts’ or last minute cancelled plans. It certainly makes the time we do get to spend together even more special.
I’m also going through a really, really bad time with my stomach – some of the worst pain I’ve ever been in, tender to the touch, constant pressure and discomfort. Nothing was helping me and I think I just have to ride this one out. I hope at least; I’m kind of scared and every doctor I see just tells me to have surgery.
I just started taking VSL3 because some people have great results from it and it’s really expensive which makes me think it has some validity? I’ll let you know how that goes (have you been on this yet? I feel like you must have). Anyway, I hope you can continue to stay distracted and get through this.
Ali I am so sorry. I don’t have crones or colitis and all I can do is read, and give you my heartfelt sympathy, and by I heart sweat shirts, of course. But I think you are amazing and the fact that you deal with this, push through the pain, and still love life and show your joy is infectious.
I like the advice about mental training. It is somehwta true. I had a rough weekend on the crohns front as well. I Cross Crountry Skied (no bathrooms!) attended a Blackhawks Hocky game and stayed at a friends house. Once I start to think that people will think I am wierd if I go to the bathroom to soon after I just went my stomach gets worse.. the nerves!! people also like to tell me to change my diet, become vegan, gluten free.. (if I have to live in pain, then I shouldnt have to give up cheese and cookies) and with everyone’s disease being so different it can often feel like you are alone. Thank you for being brave enough to blog about this. Crohn’s SUCKS! Happy Monday!
I’m dealing with an IBS flare up right now and I understand feeling like it is all in your head. I keep trying to convince myself that I don’t need to double over under my desk. I’ve sprinted to the bathroom (the non-private one with 6 stalls) 3 times since I’ve been at work. I tell my running group that I’m not running because of hip pain so I don’t have to talk about it.
Uck, sounds terrible. Mental distraction is always such a good thing, as is focusing on other pain, rather than the most obvious. Feel better soon!
I totally feel for you and can relate. I have colitis, and I have had many trips t the bathroom that just cant wait. I run on trais that have porta johns because I don’t know when I will need them. I have SMART water attached to me when I need electrolytes. I avoid going out to eat because the food mkes me sick. I hate actually getting sick, because it always ends up 10x worse for me than the next person. I wish I had any help for you, but I am just one dealing with it everyday and making the most out of my life. I always think there are people who have it worse than I do. Hopefully your flare up will go away soon!