Commuting with Crohn’s or Colitis

July 22, 2015 at 10:00 am 3 comments

One of the tough parts about being “stuck in the middle” with moderate Crohn’s Disease or ulcerative colitis is having to get up and go to work each day, regardless of symptoms. Depending on where you live and work, there are varying degrees of difficult commutes. Unfortunately, I live in New York, which not only boasts the longest commutes in the country but I also live in the borough of New York that has the longest commute in the city. By moving my job to lower Manhattan, I’ve cut my commute to about an hour and ten minutes, which is better than my hour and forty five minute commute I used to have when my job was in midtown. It still is pretty terrible.

Despite my diagnosis in my senior year of college, I’ve been dedicated to advancing my career. I have tried to not let my disease stand in the way of my career in public relations. Therefore, I have learned to cope with my commute and being away from both the comforts of home and a restroom.

Waking Up

I wake up a minimum of an hour and a half before I have to leave. If I have to shower, I wake up at least two hours before. Because I need to be at my desk by 9am and I stop for a cup of coffee, that means I need to wake up by 5:30am on the days I shower. I do this because my disease is the most active in the morning. On average, I use the bathroom three to four times before I ever step foot out the door in the morning. It takes a lot of time to settle my stomach down but I have the process down to a science. And this is when I’m feeling well and not in a flare up.

Getting Out of the Door

I start checking NYC’s Metropolitan Transit Authority (MTA) Bus locator app about a half hour before I leave my house. I track a bus that I need to catch and I follow that until I know I need to be out the door to make it in time. This is the make or break moment of my commute. At least once a week I’m at the point I need to be out of the door, I take one step outside, and turn back around to use the bathroom one last time. It always results in me missing my connection and being late.

Getting there too early isn’t really an option either. I tend to get in my own head if I’m there too early, and often times end up running home to use the bathroom or a local establishment. Unfortunately my only options are a gas station, 7/11 convenience store and a Walgreens. I usually rotate those options so I don’t inconvenience one more than the other. At Walgreens I need an employee to open the door for me so I only go when it’s a small emergency.

On the Bus

Once I’m on the bus, the panic continues. The traffic in the summer is significantly lighter, thankfully, because schools are out. But normally I’m sitting in quite a bit of traffic and I worry constantly. At each stop of my bus, I have a plan of action to get to a restroom. When I used to commute via subway, it was the same. “If I have to get off at Rector Street, here are the closest public restrooms,” I would repeat to myself.

The bus is also ridiculously crowded at all times. On some days I get a seat and on others I’m left standing. If I’m sitting I normally can calm myself down, do my breathing exercises, pull out my phone to distract myself and get to my destination. When I’m standing I cannot do that and my nerves often get the best of me. Even worse, when I’m standing and people are on top of me I get claustrophobia on top of everything else. I’ve been known to abandon a bus because of crowds, only to get on another, more crowded bus.

On certain days I want to ask for a seat in the disabled section, but I always feel funny because I do not have a visible disability. As it is, when I was nine months pregnant nobody offered their seat for me, so I can’t imagine anyone would be enthusiastic about giving me their spot. I’ve seen people with canes and the elderly stand, so what gives me the right to that seat?

Staten Island Ferry

The Staten Island Ferry is my safe haven. Once I get to this part of my trip, I breathe a little easier. Why? Both terminals (the Staten Island and Manhattan sides) plus the boats themselves have restrooms.

Just because I’m on the ferry doesn’t mean I’m in the clear. Even though the boats and terminals HAVE restrooms, doesn’t mean that I want to use them. They’re pretty gross, to be quite honest, and there are often homeless people hanging out in there and lines of impatient commuters waiting their turn.

Also, thanks to the weather, my experience on the Staten Island Ferry varies greatly. The heat exacerbates my ulcerative colitis. There is no air conditioning on the Staten Island Ferry, but on most days the ocean breeze is enough. On other days, the humidity truly gets to me and my stomach and joints immediately start hurting. I am worthless on those days, both at the office and at home. Luckily at home, I have my husband to pick up the slack. At work I’m not so lucky.

Walking to Work

Once I’m off the ferry I’m back in the grind. This is where I used to depart into the depths and onto the subway. Luckily now I work close enough that I have a twenty minute walk to work. While this is great, it does have its drawbacks. First, if I need to use the restroom I have to find a place that will allow me to do so. New York failed (yet again) to pass the Restroom Access Act, leaving the choice up to the many businesses that I pass along the way.

Second, when the weather is lousy I am left to the elements. There is no easy way to get to my office using public transportation and few cabs during rush hour. In the winter months my bones ache and as I mentioned before, during the summer months the heat really bothers me.

Bottom Line

Commuting with Crohn’s Disease and ulcerative colitis is not fun; in fact, it’s miserable. What I’ve described to you is the commute I do five days a week ONE WAY. It is my commute routine that I do while I am well, and during what I consider remission. I’m sure you can imagine how much worse this can be during a flare up.

I do not write this for your sympathy, nor to say my commute is better or worse than others. It is simply an insight into what patients like me go through on a daily basis. It isn’t easy to manage, but we really have no choice. In order to live our lives, it is a necessity.

How do you manage your commute? Tell me in the comment section below or connect with me on Twitter @RoeMoPR.

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3 Comments Add your own

  • 1. Jess B  |  July 24, 2015 at 10:03 am

    I’ve always wondered how folks like us survive life in the city and commuting via public transportation. I use the same strategies to feel prepared, plan all of my possible “escape” options and try to calm myself when I’m traveling (Ativan also helps). It’s amazing that you do it every single day…twice a day. That’s Superhero stuff!

    Reply
    • 2. roemottola  |  July 24, 2015 at 10:09 am

      Thanks Jess. I’m really not a Superhero but I appreciate it. It’s true though, sometimes I feel more comfortable on my commute than the car too, because I have a routine that’s down pat. We do what we have to do…

      Reply
  • 3. Breukelen  |  August 3, 2015 at 7:57 pm

    Reading this made my heart heavy. It seems you’re managing it well, so I don’t mean it in a pitying manner. It just resonated with my own struggles with IBS as a New Yorker. I do all of the same things you described whenever I’m taking the train or a bus. My longest commute was from south Brooklyn to East Harlem – looking back, I can’t believe I did it for so long! Ultimately I bought a car to take away the social anxiety factor. The only thing I missed about public transportation was downtime to read. Now I have a job in my neighborhood that I can quickly bike or drive to. It feels like I’m living the dream, but of course there are still flare ups that make my 10-minute commute a challenge too. That’s the way it goes I guess. I bet I could work from home and still struggle with the commute to the kitchen! 🙂

    Anyways, thanks for posting – it’s comforting to know others in the city are dealing with this and not letting it hold them back. Sending you lots of positive energy and support from Brooklyn!

    PS – Found your blog after reading up on restroom access in NYC. So disappointed it didn’t pass but am hopeful for the future!

    Reply

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