The 11 worst things about having Crohn’s or ulcerative colitis

There’s no doubt that having inflammatory bowel disease — that is, Crohn’s disease or ulcerative colitis — can bring lots of frustrations. With proper diagnosis and treatment, most people are able to lead fairly normal lives, although it might take some time and trial-and-error to reach that point. At every stage along the way, it’s nice to be able to commiserate with people who know exactly what you’re going through. That’s one great thing about social media — you can get in touch with people from around the world who are dealing with the same condition you are.

Crohn’s and Colitis Headquarters has built an active community on Twitter at @colitiscrohnshq, and it’s a great way to find out what people think. We asked our Twitter followers: What’s the WORST thing about having IBD?

This article isn’t meant to be a downer. As noted, most people with IBD can still be happy and productive, with some adjustments. But when you’re having a flare, it’s easy to get depressed, and it helps to know that there are plenty of people out there who “get it.”

Here’s what people said:

1. The Constant Uncertainty

It’s frustrating to feel that you’re not in your control of your life.

Having to cancel plans when a flareup starts. No matter how many times you explain to family or friends what’s happening with you they don’t understand or believe you.

— Twanz (@IAmTwanz) January 1, 2020

When you have IBD, your condition can change with no warning whatsoever.

The uncertainty. You’re feeling good one day and the next day might be a different story.

— T!m (@Goober99_) January 1, 2020

2. Bathroom Issues, of Course

If you have Crohn’s or colitis, you know this all too well!

Is during a flare up having the worst wind and having to go to the bathroom every time you have wind in case of accident . That and the soreness from going to often sometimes resulting in anal fissures etc

— The one&onlyNonie! (@noniedougal231) January 1, 2020

Going to the bathroom can take over your life during a flare in a way that most will never comprehend.

Stairing at bathroom walls

— DJack (@DjackFOC3) January 1, 2020

It can be quite embarrassing at times.

Being heard on the toilet 😩😩

— Sabrita Dale (@SabritaDale) January 2, 2020

By necessity, figuring out where the nearest bathroom is becomes an obsession.

Urgency when flaring, and having to know where all restrooms are located just in case. Secondly, people’s lack of understanding of the disease….even though I have tried to educate them.

— Jennifer Marks (@jennjmarks) January 1, 2020

3. The General Cluelessness of People Around You

You can never assume that friends and family understand what you’re going through.

People not understanding just how completely it takes over your life

— Tatum (@Ma2adams) January 1, 2020

As a rule, they have no idea.

People not actually understand what your condition is!

— CHLᎧE (@ChloeP96) January 1, 2020

They often think you just have minor digestive problems.

Some people still – after 30 plus years – don’t realise it isn’t just a jippy tum.

— Jackie Rainford (@JackieRainford1) January 2, 2020

And unfortunately, many don’t want to learn more.

The fact that it is both invisible and taboo. You don’t look ill but when you try to explain the symptoms, the subject touchess things most are uncomfortable talking about. So its then easier to hide it to make things less awkward. It’s a catch 22 situation.

— Laura Bauld (@LaLaBauldie) January 1, 2020

4. Having to Watch What You Eat

For some people, IBD brings dietary limitations.

My diet. Can’t eat vegetable, nuts, a lot of fruits, anything whole grain. Going out to eat sucks

— Brady Lake (@Bradyhockey25) January 2, 2020

5. The Exhaustion

IBD has a way of sapping every last bit of your energy at times.

The fatigue is horrible. Literally feel drained and its just bang💥🤦‍♂️it hits feel hollow with nothing inside. Migraines are another pleasant side affect im experiencing. 😬. #WEFIGHTON pic.twitter.com/ijEzFjIjGu

— Ed P (@EdPapworth) January 1, 2020

It pretty much hits us all at one point or another!

Fatigue. Thinking you can go about your day then feeling exhausted walking to the next room

— Jim Dawkins (@jimmyJAD16) January 1, 2020

6. The Pain

When you’re having a flare, IBD can hurt. A lot.

The worst thing about having Crohn’s is the pain. The physical pain is excruciating and extends from your digestive system outward, but there’s emotional pain as well. What you’re going through extends from you to those around you.

— Stephanie (@MissBension) January 1, 2020

7. The Way It’s a Hidden Disease

You can’t necessarily tell from the outside that someone has Crohn’s disease or ulcerative colitis.  Sometimes people have a hard time understanding that you’re sick.

The fact that it’s an invisible disease. People never really understand how debilitating it is because we look healthy on the outside.

— Jessica Rose🌹 (@JessicaSteelle) January 2, 2020

Nobody wants to look ill, but it’s hard when people just don’t get what you’re going through.

“You look fabulous!” Said to me after I’ve sat on the toilet since last nights supper until 5am and afraid to go to sleep in case my depends leak.

— ML Goodacre 🖤 (@MLGoodacre) January 2, 2020

8. The Fact That It Affects So Many Aspects of Your Life

IBD can touch just about every aspect of your life, including work, family, romance and social activities.

Missed opportunities. Not being able to travel, missing/cancelling plans, not doing your dream job, not being able to eat out/do the same range of activities.

— Susan H (@Susanthecrohnie) January 1, 2020

Travel can be a particularly big issue!

Being afraid to be in a car for a long amount of time

— Crohnie Pants (@wannabehxc) January 1, 2020

9. The Treatments and Diagnostic Procedures

We need them, but sometimes we hate them.

Infusions!!! Every time I have to put everything on hold to spend hours in the chair and lose work and copay $$!!

— Bill N (@MemRibMan) January 1, 2020

Colonoscopy prep is no one’s idea of a good time!

Drinking prep before a colonoscopy!(only because I’m going through that right now) but canceling plans and people not understanding why you may need to cancel

— Haley Stearns (@haleyyy_6) January 2, 2020

10. The Complications and Related Conditions

IBD sometimes brings along unwelcome “friends.”

Going to the emergency department last night with haematemesis and melaena ranked as a new low. Colonoscopies are a close second. Enteropathic Ankolysing Spondyloarthritis isn’t much fun either…

— Sam B (@crohns_999) January 2, 2020

That’s because IBD and its treatments affect the body in so many ways.

Combined with side effects from medications, it really is an all-encompassing illness: The endless list of GI issues, but also fatigue, additional sickness from immunosuppressants, nausea, headaches, etc.

— Lauren Nolan 👸🏼 (@LaurenNolannn) January 2, 2020

11. The Combination of Everything!

This isn’t exactly a separate item, but let’s face it: Sometimes it all hits at once and that’s when IBD really takes on a life of its own.

The unpredictability.The fatigue.The anemia. The mental issues.The pain. The lack of understanding of the illness. The expectation that you HAVE to get better. The… it’s hard to pinpoint one single element as our lives get turned upside down, so many factors. #ulcerativecolitis

— Matilda Blixen (@Matilda_Blixen) January 2, 2020