Free iHaveUC EBOOK Signup Form

UC on the Subway

Intro:

My name is Dana–I’m 25 and was diagnosed with UC two years ago. I’m a writer, currently living in sunny Santa Barbara, CA. When I’m not in the bathroom, I’m hiking, beaching, or holing up in my room reading The Hunger Games.

Symptoms:

In the midst of a flare-up
My Story:

I’m sure there’s no fun place to be living with undiagnosed (or diagnosed, for that matter) ulcerative colitis. But I’ve gotta say New York City may be one of the worst.

Two years ago, I was waltzing around Manhattan without a care in the world. I was between my second and third years of law school and I had decided to spend the summer doing an internship in NYC. As a West Coast native, I was ridiculously excited for what I assumed would be a summer of jumping in taxis, drinking cosmopolitans, and spending evenings on the observation deck of the Empire State Building.

colitis on the subway in New York

Of course, I quickly found that A) I couldn’t afford taxi rides, B) cosmopolitans made my stomach hurt, and C) nobody goes to the Empire State Building. Of those three realizations, the one that really ended up negatively affecting my life that summer was the first one. Under ordinary circumstances, the subway is an acceptable, if slightly dirty and not-so-slightly crowded, mode of transportation.

But when you have to go to the bathroom every 15 seconds, the subway is an underground pit of anxiety, sweat and desperation.

I had been in the city for about three weeks when the symptoms started. It was the summer of 2010; I had just turned 24. Every day, I rode the subway from my Brooklyn Heights apartment to my job on the upper-upper-upper east side of Manhattan–which, as anyone familiar with the city knows, is a bitch of a subway ride. But for those first few weeks, I was fine with it. I actually enjoyed walking to the 4 train every morning, balancing a cup of coffee and what felt like 17 bags of personal belongings.

Then the UC symptoms flared up and my commute became a whole lot more interesting. I don’t know anyone else with the ailment (to me, disease is too strong of a word and sickness isn’t quite accurate…I played around with calling it a ‘condition’, but that sounds weirdly mysterious), so I’m not sure if my experience was the norm.

For me, the ailment popped up in a 24-hour span. One day, my digestive system was tough as nails–I could eat anything, drink anything, and never seemed to get those things called ‘stomachaches’ that my friends complained about. The next day, I was standing on the subway platform, reading a romance novel (I used to be embarrassed by that particular habit, but after experiencing UC symptoms on a New York City subway, a stopped Los Angeles freeway and in the middle of a few opposite sex sleepovers, my addiction to romance novels doesn’t seem so shameful), when I felt a tug coming from my lower abdomen.

All of a sudden, it felt like someone was scraping the inside of my intestines with an ice cream scoop. “Pay attention to me!” my stomach seemed to be screaming. In what would prove to be one of the most ill-advised decisions I’ve ever made, I stepped onto the subway train when it pulled into the station a few minutes later.

Within about 30 seconds, I knew it was a mistake. I had to go to the bathroom. Like, now. Anyone who has UC knows the feeling. The problem was, I was a hostage of NYC’s underground transportation system. I couldn’t get out of the train between stops if my life depended on it. And at that moment, I felt like my life (or at least my reputation, my pride, and my clean track record of never having gone to the bathroom in the middle of a crowded subway car) depended on it.

At the next stop, I maneuvered around the 19,000 people standing between me and the subway door. I ran up the stairs in a blind panic, emerging onto a completely unfamiliar Manhattan street corner. I pulled out my iPhone and frantically typed “FIND ME A BATHROOM” into the map application. Unfortunately, that’s the one thing iPhones can’t do. Eyeing a McDonald’s down the block, I started running in the direction of the Golden Arches, a sure sign of a public restroom.

I ran about four steps before realizing I was caught in a catch-22. Running would get me to the bathroom faster, but it would also increase the urgency of my need for a toilet. So I walked. At that time, I had never been happier to see a bathroom–though my appreciation for public restrooms would continue to go up in the coming months.

There was one woman in line ahead of me. I managed to arrange my face into a soothing smile, one that was completely mismatched from the panic I felt inside. Concentrating heavily on breathing in and out in an effort to NOT concentrate on my bathroom emergency, I waited. When it was finally my turn, I didn’t know what to do first–dance a celebratory jig or pull my skirt down and run for the toilet. Of course, I went for the toilet. The jig would come later.

It was glorious, as the experience would be so many times after that. Sometimes I think suffering from UC is worth it, just because finding a bathroom when you really need one feels so satisfying.

That first day, I spent 15 minutes in the McDonald’s bathroom, then left and headed back to the Brooklyn Bridge subway station. After stopping at a Starbucks halfway down the block for another bathroom stop, then waiting there for 10 minutes to make sure it was safe to go back underground, I hopped on the train.

My stomach, my colon and I finally made it to work in one piece.

The next three months were a blur of sweating on trains, fielding pissed-off looks from McDonald’s employees every time I used their restroom and failed to buy something (my all-white-rice-and-ripe-banana diet wasn’t really conducive to BigMacs), and trying to explain to my boss why I would periodically disappear to the bathroom for hours in the middle of the day.

I was finally diagnosed with UC a few months after I moved back to Los Angeles–but that’s a whole different story. Teaser: to this day, I can’t decide which is a worse mode of transportation for someone with UC–a packed subway with the potential to strand its passengers underground between stops, or a crowded Southern California freeway where traffic could come to a dead stop at any minute.

Where I’d Like to be in 1 Year:

Out of the bathroom.
Medications:
I’ve been on Lialda for about a year–it’s worked great, although my symptoms have flared up over the last two weeks.

written by Dana

submitted in the Colitis Venting Area

Tags: NYC, subway





9 Responses to “UC on the Subway”

  1. TJApril 8, 2012 at 12:51 pm #

    That is scary. I always wonder if anyone with UC had to take the subway while in a flare… That in the cold weather here with UC sucks. I’m on Asacol and Probiotics (Remission)! :-) try the light maintenance drugs before using any stronger drugs.
    Hopefully u feel much better out there and can continue your education.

  2. claudia andersonApril 8, 2012 at 9:38 pm #

    Stay on the drugs, add probiotics, & start the SCDiet! The drugs will help through the flare, but it’s the diet & probiotics that will begin the healing & hopefully, eventually, you will no longer need the drugs (yes, it will require a bit of a change in your lifestyle–but you are absolutely not alone–lots & lots of good advice here & elsewhere on the web) …. Also, please consider meditation and/or stress reduction techniques (e.g.yoga) — re-evaluating your emotional responses & states–part of the cure! Wish you success! <3

  3. Paul WilloughbyApril 9, 2012 at 3:53 am #

    I can relate to your story. Traffic jams make me anxious. Public transportation makes me anxious. Going anywhere without a bathroom makes me anxious…

    Paul

  4. JoeApril 9, 2012 at 6:44 am #

    Dana,

    I feel your pain. I commute from NJ to NYC every day for work and take the bus. I do get lucky and have a bathroom on my bus about 50% of the time, but the times I don’t I am always very panicked.

    I had an issue last fall where I couldn’t get to a bathroom in time on a weekend…I was actually playing golf. Ever since then, I have panicked it would happen again, especially during the week on my commute or in a meeting or something. The Monday after my incident, I was extremely panicked as I, all of the sudden, had to go to the bathroom on the commute home once we hit the Lincoln Tunnel. Problem is, there was crazy traffic and it ended up taking almost 2 hours to get to my bus stop. Somehow I was able to hold off, but I was dripping sweat and my body ached from tightening every muscle I have for the entire ride home. I have had a few other times where I had bad urgency on the commute, and lucked out a few times that I was on one of the buses with a bathroom.

    People have no clue what a struggle it is to do normal things every day. I have mini panic attacks twice a day before going to and from work. I lucked out the other night out at dinner when the restaurant’s one toilet, co-ed bathroom was open when I had to rush to the toilet in the middle of dinner. I now carry an extra pair of pants, underwear and baby wipes in my work bag, but I’m not sure it would do me any good if something happened anyway. I find myself taking 2 Imodium in the morning about twice a week, and that has been pretty helpful. I have tried the train, but it takes FOREVER to get to and from work where I live, and I refuse to let UC dictate my life to the point it takes me like an hour more each day to commute.

    Anyways, just wanted to let you know that you’re not alone. I am a commuter dealing with this horrid disease every day too. I wonder if we can have the CCFA lobby public transportation providers to supply all buses/subways/trains with bathrooms. I’m sure they would all be absolutely disgusting, but it’s better than the alternative. Feel better and hopefully there’s a cure soon.

    Joe

  5. GaryApril 9, 2012 at 2:04 pm #

    Wow. In a flare up I would not get caught anywhere where I could not get immediate bathroom privileges. I’ve missed a few times but I’m in a vehicle most of the day (landscaping). I carry grocery store bags, extra underwater, and lots of Costco baby wipes. To the restroom. Change underwear, clean up (thank the Good Lord for Costco baby wipes – they should change the name to multipurpose wipes) and old underwear into plastic shopping bag tied tight for smell and into the garbage. My wife recently bought me Costco adult diapers. Very embarrassing as they puff out a bit. I’ve worn them a few times when I have felt insecure but not needed them yet. I’ll bring them to work with me when season starts. I’ve put my underwear over them and I see that if my shirt should come untucked you can only see my underwear. The underwear – brief kind makes them less puffy too. I love to ski but have not since diagnosis 4 years ago. Afraid to be stuck on hill needing washroom. Sometimes I have less than 1-2 minutes.

    I too up to age 43 have never been in a hospital never been sick, never got stomach aches. I could eat anything. I called myself the guy with the cast iron stomach. I’ve gone out for dinner a couple of times over the years where everyone els in the party has gotten food “poisoning” and I’ve come out unscathed. I was like clockwork. A 5 min bowel movement when I woke up (includes magazine time) and somtimes a quick washroom break before bed. I was the guy on road trips that never needed to stop unless I drank too much coffee or pop. Then bang. Overnight a knife in my stomach that wouldn’t go away. First think I thought was cancer…to find out its UC which changed my life…

  6. GaryApril 9, 2012 at 2:30 pm #

    I know the panic feeling and it only makes things worse. On Sunday I went to church on time as usual and usually can find an end seat. Easter Sunday packed. I’m lucky though and find a chair in a middle of a back row. I can push the seat back and escape to the bathroom that way. Again Easter Sunday packed. More people coming in. 5 min later they start putting out several more rows of chairs behind my row. I start feeling hot. My forehead starts sweating. I’m shaking. I can’t consentrate on the worship music. I look for best escape route just in case. It’s longer out to my left and then I have to backtrack to the exit losing presious moments. To my right it’s shorter but new born baby and family, baby carrier on floor. I try to calm down. Music over and into sermon. Doing quite well and proud of myself. 35 min into service I check escape path again which starts a panic. Everyone sitting down. I think if I start passing gas I have to try to manouver down the isle over baby carrier with my but in people’s faces as I’m passing gas.

    I start to feel gurgling. Will it calm down? Yes. Spoke too soon. No. Can I ride this out or will it be an accident? I’ve learned with UC you can never know. I decide to take the safe route and head for the bathroom. I grab my keys and coat and stand up. Boom it gets worse. Am I going to make it? Excuse me…excuse me…excuse me. I start reusing to the bathroom. Nope getting worse. Gotta slow down and pace myself. I see the door. Open it. Thank God light its off, means no one is in there. Two stalls both open. Now I always get the belt, zipper and button off. I’ve learned that the hard way. And then I decide if I’m going to line the seat with paper, give it a wipe with baby wipes, or give myself a good wiping afterward. Ever notice that most places now are using TP that is virtually see through on a 2 foot roll that tears at the slightest or when tears of the end gets lost way up there. I use baby wipes for the cleanup but calling this stuff TP is a joke. I swear somtimes it’s 3″ wide. Well back to my story. I do the seat lining and just make the sit down. Do you ever notice its when you push that washroom door open that the urgency is the worst? So it’s always really bad if the stalls are taken. I remember once last summer I walked into a mcD washroom to find one stall where a fellow was just getting out. I’m in door locked and I’m just about to lose it when I get a knock on the door. Hey buddy l left my phone on the TP holder can you pass it to me? That was real close. I think I was still standing. Well 20 minutes later and the kids are gone to sunday school and I can find an easy seat but still not an isle. Was able to finish off the service. :)

  7. Rebeka
    RebekaApril 9, 2012 at 9:40 pm #

    Welcome Dana!
    Thanks for sharing your story!
    I used to live in Germany up until two years ago, where I used to take the train to school every morning, but luckily they had toilets. Not the cleanest place you’ll ever use, but does the trick. I think the urgency is something people without the disorder can’t quite picture. Doesn’t matter where you are or what you’re doing…
    Oh, and, “Yay!” finally someone else living in SoCal!
    Hope you feel better soon!

  8. AliceApril 10, 2012 at 4:47 pm #

    Once you poop your pants – you can do anything good! I mean.. isn’t that like the greatest fear of all time? Conquered. And I live to write the tale…

    The best saving grace in a messy situation.. a fellow UCer!! I was on a nature hike.. got lost, could
    NOT find my way to my car and had been walking for hours (not something I was conditioned for). It was going to get dark soon and the last type of people you want to ask for help is a prissy white picket fence type family with kids in a situation like this. They were everywhere enjoying the birds etc. The outhouse allowed me to somewhat clean up. I had a jacket wrapped on my waist and tried asking for directions with no luck.. I had to go again and it hurt so bad! What was I thinking even going on a hike!

    I ain’t preaching religion here, just saying there is a power of synchronicity. I sat along the side of the path and begged.. whatever God there may be.. to send me some help.. I was imagining perhaps a short stout woman named Helga with big boobs like the one who used to do my colonics. You know, someone motherly. Someone I could look in the eye and say “um, I pooped by pants”. Instantly, a woman walked by! No Helga but I explained being lost, she offered a ride back to my car but then I had to explain that I was sick and the situation. “Its okay” She replied I have UC too!! OMG! She had the J pouch and everything. THANK GOD! :D

    In remission!!!! SO glad those days are over! The body does heal and this doesn’t last forever. Never give up NEVER!

  9. TrishApril 12, 2012 at 5:34 am #

    When I lived in London, commuting was a nightmare. I quickly gave up on the Tube and switched to buses, but this meant commuting at least 90 minutes in each direction, perhaps up to two hours each way. The morning ride was the worst – I very often had to get off and use a public loo. And then they closed the loos because of the drug users, and then where the hell is a person meant to go? Now that I live in the country, things are a lot easier, but I do keep a change of clothing in the car, and loo roll and baby wipes. And the DH knows full well that if I say Stop the car NOW, I mean it – he’s very good. Thank heavens for crop rotation, LOL – there’s usually something growing in the fields, and my favourite of all is the maize… :) Trish

Leave a Reply