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“Gotta Go” Moments with IBD

One of the most difficult symptoms related to Crohn’s disease is urgency. The need to get to a bathroom promptly, with little to no notice. It’s an embarrassing and stressful part of living with this invisible illness. You feel the uneasy pain and the need to go over, over, and over again. Each time calculating in your mind how many minutes it will take you to get to the nearest bathroom and plotting out your course and game plan.

When the pain of urgency hits

Not even caring if it’s a public or private restroom because you honestly have no choice. These past few weeks there have been countless times where that unwelcomed pain hit my stomach. For days I could barely make it through feeding my son a bottle without having to hand him off to my husband after a couple ounces. I went to get my nails done and wasn’t sure if I was going to be able to make it through the manicure. It’s kept me from running errands and changed my plans because of the stress related to the uncertainty. To those around you, you look carefree and comfortable. While on the inside you’re struggling to keep it together and fearing an accident. Doing meditation and deep breaths can help to temporarily calm down your insides… while trying to continue looking calm on the outside.

Urgency is even worse at work or in social situations

In social situations—whether you’re at work or out with friends, or at someone’s house—it’s even worse.

Luckily, I’ve found friends and family are extremely understanding when it comes to sometimes needing to use their bathroom. It is what it is… and you know what, at the end of the day… everyone poops. It’s not ideal, but I think it’s safe to say whether you have Crohn’s or not… everyone’s had a time where they had “to go” at an inopportune time.

For those with Crohn’s the feelings and consistency are amplified tenfold. There’s nothing worse than public businesses and stores whose bathrooms are for “employees only.”

This is where the “Restroom Request Cards” come in. For those of us with Crohn’s disease and ulcerative colitis, we can register for a free card that allows us to discreetly share our needs when unexpected symptoms arise. You can keep it tucked away in your wallet or purse so you have it ready, just in case. The card provides peace of mind and the knowingness that you have a “free pass” to the use the bathroom.

The stress of constantly having to use the bathroom

Mentally, the stress and worry of bathroom issues is enough to make you want to isolate yourself and stay in your comfort zone at home. In my mind though, that’s letting the disease win and control me. I choose to control it as much as I can.

Just like all things in life, the difficult moments and times pass. It’s not easy when you’re living it, but you overcome. The pain and struggle comes in waves, it’s not a constant. Keeping this in mind is a helpful way of staying strong and keeping a positive attitude. The limitations we place on ourselves while justified, don’t have to be a constant unless we let them.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Motown_Mrs
    7 months ago

    Thank you for sharing your thoughts. I think “the stress related to the uncertainty” is one of the worst parts of the disease. I find myself staying home more because I just don’t want to have that added anxiety when I go out. I am pretty recently diagnosed, and still working through this.

    Thanks for mentioning the “Restroom Request Card”. I’ve never heard of that before, but I can think of instances where it would certainly be helpful.

  • thedancingcrohnie moderator
    7 months ago

    Definitely get yourself one. It is helpful in those emergency situations when you need access to a bathroom designated for employees only.

    Always dancing,
    Elizabeth (team member)

  • thedancingcrohnie moderator
    1 year ago

    The Restroom Request Cards are a great tool to have. I personally have never had to use mine, as I kind of forget it’s in my wallet, and normally if I ask politely to use the restroom they always say yes. But I highly recommend everyone getting one, as I think it even just helps with anxiety knowing that you have it.

    Always dancing,
    Elizabeth (team member)

  • greataunt22
    2 years ago

    I agree with your article. I would also add when I have people over to my house and the urge happens, sometimes it’s difficult to go when other people are in the house. Not so much family members or friends, but contractors, etc. because we all know it can be noisy when we go. I had a contractor in my house to give me a quote and I had to go. I held it as long as I could, then informed him I had to use the restroom. I was in there for quite a while, luckily the contractor was in my garage. One other time some friends dropped me off after eating lunch at a restaurant. They came back in so one of them could use the restroom. All of a sudden, I had to go. I couldn’t wait until they left!

  • Natalie Hayden moderator author
    2 years ago

    Thank you! I can certainly relate to feeling that way, too. It’s crazy how it always seems to act up at the most inopportune times!!

  • SusanHU
    2 years ago

    Thank you for sharing your stories too greataunt22 and for weighing in! – Susan ( Team Member)

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