Staying Social With Ulcerative Colitis

Reviewed by Neha Pathak, MD on October 20, 2020

Your friendships enrich your life. They’re good for your health, too. Studies show that people who have good friends and good relationships are healthier, happier and may live longer. That’s why maintaining your social life might be the perfect supplement to your ulcerative colitis care.

“Whether you have IBD or not, social isolation is not healthy for human beings,” says Marci Reiss, a licensed clinical social worker and founder and president of the IBD Support Foundation.

During a flare, you might feel like hiding at home, but ulcerative colitis doesn’t mean your social life and relationships have to end. Managing your friendships while managing your condition is a balancing act that you can learn.

Getting Support

You’re close with your friends, so it might help to tell them about your condition. That doesn’t mean you have to tell everyone, and you don’t have to tell them everything.

“Bathroom talk -- diarrhea, urgency -- is not easy to share, and no one is ever coached in how to explain this to people,” Reiss says. Her advice? Carefully choose whom you tell and exactly what you tell them.

Out and About With UCYou don't have to give up on going out. With some planning and organizing, you can get on with your life and not let UC cramp your style.147

SPEAKER: When you have

ulcerative colitis,

your need for a bathroom break

can be urgent and unpredictable,

making it hard to be

out and about.

UC affects the large intestine,

causing symptoms

like sudden diarrhea, pain, gas,

and sometimes bleeding.

You may feel like you need to go

but can't.



There are steps you can take

to manage your symptoms so

that you don't have to give up

on going out.

With some advanced planning

and organizing, you can get on

with your life

and not let UC cramp your style.

Find out ahead of time where

nearby bathrooms are located

in case you need one.

There are even apps for that.



Have a go bag packed

with healthy snacks, water,

and meds.

If you're eating out,

check the menu before you get

there.

That way you can stay hydrated.

Eat foods that do not cause

flares.

And stay on your medication

schedule.



Bring a change of clothes

and bathroom

wipes so that if you need them,

they're right there with you.

Order a free restroom

request card online.

You can get it from the Crohn's

and Colitis Foundation.

Show the card to shop owners,

restaurant managers,

or attendants.

It lets them know you need

to use the bathroom

for medical reasons.



Consider telling friends,

family, and colleagues

about your UC.

Check reputable online resources

for suggestions

about tackling the subject

and jot down or think

through how you'd like

to approach it.

It may feel like something

you don't want to get into.

But if you're out with friends

and family, they can help find

a bathroom or get you home

if your UC kicks up.



If you're traveling,

research where you're going

ahead of time.

If you're going abroad,

learn phrases

in the local language

to ask for help

or find a bathroom.

Understand the local customs

so you can anticipate what you

need to do to get help when you

need it.



You don't have to tell

your employer or school

about your UC.

But if you do, be aware of where

they must accommodate your needs

according to guidelines

and eligibility.

Stress doesn't cause UC,

but it may trigger a flare.

Learn techniques to handle

your stress, whether it's

meditation, yoga, breathing

exercises, or even just

listening to music you love.



UC doesn't always have to mean

you restrict

your daily activities.

In many people, the symptoms

are mild to moderate.

And there are treatments that

can help.

There may be times when you need

to adjust your schedule

or plans, but you can often get

out and about comfortably even

with UC.

Crohn's & Colitis Foundation: "Living With Ulcerative Colitis,"<br>"Navigating Daily Life With IBD,"<br>"Emotional Factors,"<br>"Get Tips for Daily Life With Ulcerative Colitis."/delivery/aws/3e/57/3e572c79-0d6d-45ea-8a3f-f8cd8367f823/091e9c5e820738c8_vo-feature-get-out-comfortably-uc_,4500k,2500k,1000k,750k,400k,.mp411/19/2020 12:00:0018001200couple backpacking/webmd/consumer_assets/site_images/article_thumbnails/video/vo_feature_get_out_comfortably_uc_video/1800x1200_vo_feature_get_out_comfortably_uc_video.jpg091e9c5e820738c8

Continued

You might feel that telling your friends you have ulcerative colitis is the same as telling them you have chronic diarrhea, but, says Reiss, “people don’t know what you don’t tell them.” You have all the control in how much you choose to share. “You can put on a happy face and say, ‘I’ve got this stomach thing that acts up once in a while, and I’m just not up for going out tonight.’”

With your most trusted friends, you might choose to share more. It could bring just the support you need. When Susie Janowski of Pocatello, ID, told her friends about her ulcerative colitis, she got an outpouring of support. “Anything you could do for a person, they did for me,” she said. “It makes you realize you’re not alone.”

If you’re not ready to talk about your condition with your friends, find someone you can share with. Support groups for ulcerative colitis and IBD are readily available on social media and in real life. “It’s amazingly therapeutic,” says Reiss. Sometimes group members get so comfortable and enjoy sharing so much, she says, “it’s like a comedy show in our support group.”

Continued

Janowski, a self-described “social butterfly,” is a co-leader of her online support network. “There are a lot of good people in those groups. They’re very supportive; they try to help you out and share their experiences so that you can know what to expect with colitis.”

A word of caution about support groups: They should be supported by a health professional. “I’ve heard people in support groups convince others to stop meds, start meds, try this diet instead, definitely have surgery, or definitely not have surgery,” Reiss says. “The firsthand experience of another person who’s lived it is powerful, but it can be harmful.”

Dating

Telling your oldest, dearest friend that you have ulcerative colitis is one thing. Sharing that information with a boyfriend of girlfriend might feel like quite another. “If it’s someone you want to pursue a relationship with, you’ll need to tell them, because you need someone who can support you through this,” says Reiss.

Continued

It’s probably not the kind of thing you want to discuss on a first date, but you don’t want to save it till after the engagement either.

“It’s probably sometime after the third date, but long before things become serious,” Reiss says. “There’s a point where it’s a meaningful enough relationship that you need to share because this is a big part of your life, but at the same time you’re not so far into the relationship that the listener is going to feel betrayed that you withheld something so big.”

Reiss recommends not going into too much detail at the beginning. Share what you need to share at first and answer any questions they have. You can offer more details as things progress.

“If somebody bolts because they can’t handle it, yes, that’s painful,” Reiss says, “but consider it a blessing because that wasn’t the right person for you.”

Out and About

Once you’ve shared with your friends what you’re facing, planning social activities becomes more about logistics and less about trying to lie low. These tips might help:

  • Be in control of when you arrive and when you leave. You don’t want to rely on others for a ride home if you need to get out in a hurry.
  • Choose locations where you know you’ll have a clean, comfortable bathroom if you need it.
  • Scope out bathroom locations when you arrive.
  • Carry flushable wipes with you.
  • Ask your doctor about over-the-counter medications, such as anti-diarrheals, anti-gas medications, or digestive aids, that you can take before any can’t-be-missed social activities.
  • If you can’t go out, but want to see your friends, ask them to come to you.

Continued

Ulcerative colitis may make your social life more challenging, but it shouldn’t make it feel impossible. If it does, talk to your doctor about how well your treatment is working for you.

As you venture back out into the social world, Reiss recommends that you remember this: “You are so much more than your disease.”

WebMD Feature

Sources

SOURCES:

Marci Reiss, licensed clinical social worker; founder and president, IBD Support Foundation, Los Angeles.

Susie Janowski, Pocatello, ID.

Crohn’s and Colitis Foundation: “Living with Ulcerative Colitis.”

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