UC is also a risk factor in colorectal cancer,according to the Mayo Clinic.
UC can range from mild to severe, and it can increase in severity over time.
Patients experience periods of “flare-ups” and remissions, whether the disease is active or not.
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These periods can be unpredictable and last for short or long periods of time.
Flares are often debilitating and patients can wind up hospitalized during these periods of active disease.
Managing UC is a complex puzzle of treatment options and unpredictable symptoms.
We spoke with nine women to find out what life is like with the disease.
“I kept throwing up at work.
I’d had stomach problems for awhile: nausea, bloody diarrhea, lots of visits to the toilet.
At the hospital, they did a colonoscopy and diagnosed me with ulcerative colitis.
Since then, I’ve lost count of how many times I’ve been hospitalized.
I’ve had my colon removed and replaced with aJ-pouch.
It’s hard to remember the pain of a real UC flare now.
It’s almost like my brain has blocked out that trauma.
It was agonizing, I remember that.
Like someone had rammed a corkscrew into my abdomen and was twisting it around and around.
I want people to know that just because we look well, doesn’t mean we are well.
On the outside we can look perfect, but inside we’re utterly ravaged by this disease.”
That’s how I was diagnosed.
It’s hard to describe the visceral pain of UC.
It’s an ever-present pain, nausea, and general uneasiness.
And it’s always there.
There’s horrible cramping and pain in your abdomen and rectal area.
When my UC was at it worst, it felt like I could feel every inch of my colon.
Plus, you’re tired all the time.
I think people without UC think it’s ‘not so bad’ or curable with medication.
They think it’s just diarrhea once in awhile, or like when they get a stomach bug.
That’s even what my family thought.
But no, this is every moment of my life, every day.
Most people don’t know how debilitating it is, and how it takes over your entire life.
Just the thought of leaving the house can give me a panic attack."
“I was diagnosed with UC in 2008 when I was 26.
A few days later, I started running a fever and wound up in the ER.
I could barely walk.
I’ve had four children and can say that nothing compares to the pain of a UC flare.
The pain is that intense.
As long as I stay on the biologic, I’m able to lead a pretty normal life.
I can’t just take a supplement or eat a special diet andPOOF, I’m healed!
This is a life-long disease.
You don’t know how strong you are until you have to be.”
“I was diagnosed with UC when I was 21.
I kind of suspected that I had UC because my mom had been diagnosed a few years earlier.
The doctors did a colonoscopy right around Christmas and confirmed the diagnosis.
I’m in remission now, but I get colds a lot because I’m on an immunosuppressant.
I do my best to limit sugar and alcohol and I don’t eat anything too spicy.
I want people with UC to know that it’s not your fault.
And also, not everyone ends up losing their colon.”
“I was diagnosed with ulcerative colitis through a colonoscopy.
Before my diagnosis, I had constant diarrhea (10-20 times a day) and significant weight loss.
I had severe abdominal pain and had to take pain medication nightly.
It felt like I was constantly being kicked in the gut.
I wish people knew that UC isn’t IBS.
It’s so much more than that.
It’s constant, excruciating cramps.
It isn’t simply inconvenient, it controls your whole life.
I also wish more people would accept invisible illnesses.
Most of us with autoimmune diseases cover up our pain so well.
But just because we don’t look sick doesn’t mean inflammation isn’t currently attacking our colons.
And just because we need to rest more than most people doesn’t mean we’re lazy.
Rest is a vital part of treatment for those of us with UC.”
“I was 25 when I was finally diagnosed with ulcerative colitis.
I was young and desperately wanted to ignore what was happening to my body.
Eventually I was flaring so badly that I ended up in the emergency room.
Now I’m in remission, but I use the term loosely.
I’m currently on an infusion medication every four weeks.
I also take medications as needed to help control diarrhea, nausea, vomiting, pain, and anxiety.
Being sick for almost a decade really does a number on your mental health.
UC is absolutely not just a ‘bathroom disease.’
and my favorite, ‘I/my mom/my uncle’s third cousin had that once!’
(um, I can assure you, you did not and could not have it once).
“I was 23 when I was diagnosed with UC but my symptoms started when I was 18.
I ended up in the ER, and was officially diagnosed through aflexible sigmoidoscopyand biopsies.
I’d been having severe abdominal pain and was running to the bathroom 25-30 times a day.
I wasn’t eating much and there was blood and mucous in my stool.
My abdomen was swollen and painful to the touch and my energy level was low.
A UC flare feels like someone punched you in the abdomen repeatedly, like you’re bruised and swollen.
Occasionally the pain is so bad it feels like a knife in my lower abdomen.
A lot of my friends say, ‘Oh come on, what’s the worst that can happen?’
when I talk about avoiding certain trigger foods, like salads.
But for those with UC, we know that a wrong meal can cause serious problems.
I just wish people understood that UC isn’t curable and that it can be very serious.
I chalked most of this up to pre-graduation stress combined with the usual horrific college student diet.
But a month after graduation, I was completely miserable.
The procedure confirmed that I had ulcerative colitis.
But now that I’m in remission, my symptoms are well-controlled except for some urgency.
UC impacts every aspect of my life.
No workouts, plus a steroid-fueled appetite and dietary restrictions means unwanted weight gain usually accompanies my flares.
It changes the way you think too.
I know which stores have bathrooms in the front versus the back.
I can point out the best gas stations for bathroom stops up and down the interstate.
I keep toilet paper and a spare pair of underwear in my car.
I always pack a towel to sit on if I ride in someone else’s car.
If I go on a trip, I always pack extra underwear and pants, just in case.
The ‘just in cases’ can drive you crazy.”
I remember waking up and demanding apple juice and chocolate chip pancakes.
That was about it.
Before my diagnosis, I had severe stomach pain.
I remember being in class and doubling over at my desk, just sitting there clutching my abdomen.
I also had zero control over my bowel movements and wound up pooping my pants a few times.
Then I started filling up the toilet with blood, in addition to the pain and lack of control.
I wouldn’t wish the pain of UC on my worst enemy.
Once the pain passes, you’re completely wiped out.
I get tired really easily, and I’ve developed a unique talent for sleeping.
Sometimes I have control over my bowel movements, and other times I don’t have any control.
I still pass mucous and blood in my stool.
In the past it’s been lettuce, pineapple, and tomatoes.
I also give a shot to avoid dairy as much as I can.
I wish more people knew that UC is not just a bathroom disease.
It’s caused me to cancel plans multiple times, and that takes a toll emotionally, too.
It’s caused me to miss out on things that I would normally love doing.
It takes me away from family, friends, and work.
I don’t want to be known as that ‘sick girl.’
Ulcerative colitis is a serious disease and not something you want to delay getting treatment for.
So if you suspect UC could be behind your bathroom issues, talk to your doctor.
Responses have been edited for length and clarity.
