9 People Describe How They Were Diagnosed With Ulcerative Colitis
Ulcerative colitis, or UC for short, is a form of inflammatory bowel disease (IBD) that affects portions or all of your large intestine (aka your colon) and rectum. The Centers for Disease Control and Prevention (CDC) estimates that 3.1 million Americans (1.3 percent) have IBD, which also includes Crohn’s disease (a form of IBD that affects the entire digestive tract).
UC is a chronic condition that can cause long-term inflammation and ulceration, severe diarrhea, abdominal pain, blood and mucous in your stool, urgency, nausea, joint paint, fever, weight loss, and fatigue. UC is also a risk factor in colorectal cancer, according to the Mayo Clinic. And while there’s no known cure for ulcerative colitis, removal of the colon and rectum in a procedure called a proctocolectomy can eliminate the disease.
Other treatment options include corticosteroids, anti-inflammatory drugs called 5-aminosalicylates, immunosuppressant biologics (which means the medications are developed from human and animal genes), and bowel resection or removal. Patients can also manage symptoms with pain medication, anti-nausea medication, and antidiarrheals, though all medications should be taken under the care of a doctor. IBD is often confused with irritable bowel syndrome (IBS), a disorder that causes pain and cramping of the large intestine. But unlike IBD, IBS doesn’t cause long-term damage to your intestinal tissue or increase your risk of colorectal cancer.
Ulcerative colitis is diagnosed through a variety of tests including blood tests, stool samples, CT scans, X-rays, and colonoscopies (during which your doctor will also biopsy your tissue for signs of the disease). 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. 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. The cause of UC is still unknown, though according to the Mayo Clinic, it might be caused by an immune system malfunction (which is why it’s considered an autoimmune disease), genetics, or environmental factors.
1. Michelle, 47: “I want people to know that just because we look well, doesn’t mean we are well.”
“I kept throwing up at work. I’d had stomach problems for awhile: nausea, bloody diarrhea, lots of visits to the toilet. I had a doctor’s appointment but couldn’t get time off of work, so it was a few weeks away. I called  because I couldn’t stop vomiting, and I felt like I was going to collapse. At the hospital, they did a colonoscopy and diagnosed me with ulcerative colitis. I was 44.
Since then, I’ve lost count of how many times I’ve been hospitalized. I’ve had my colon removed and replaced with a J-pouch. I still go to the bathroom about 10 times a day and I still get diarrhea, but it’s nowhere near as bad as it was (and no blood). I do get butt burn, which is a sort of rash because what I pass now has a lot of stomach acid in it. I’m also anemic (so I get regular iron infusions) and get easily fatigued because I don’t absorb nutrients like I used to.
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.”
2. Beth, 51: “Most people don’t know how debilitating it is, and how it takes over your entire life.”
“I had mucous and a little blood in my stool, so I had my first colonoscopy at 38. That’s how I was diagnosed. Since then, I’ve been hospitalized at least six times and I’ve had several surgeries: a J-pouch and two-step take-down, and a bowel resection due to complications from the J-pouch surgery.
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.”
3. Kari, 36: “I was down to about 100 pounds and was going to the bathroom 30 times a day.”
“I was diagnosed with UC in 2008 when I was 26. I was having frequent diarrhea, blood in my stool, weight loss, fatigue, and abdominal pain, but I avoided the doctor for almost 10 months because my husband and I had lost our insurance. When I finally went to the doctor, she told me I was just stressed and that I needed more naps and a fiber supplement. A few days later, I started running a fever and wound up in the ER. At the hospital, they performed a CT scan and the doctor told me it was one of the worst cases of UC he’d ever seen. By that point I was down to about 100 pounds and was going to the bathroom 30 times a day. 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.
I started on a biologic drug, which is given intravenously, and within a few days I was feeling much better. In my opinion, it’s a miracle drug, and I’m still on it nearly 10 years later. As long as I stay on the biologic, I’m able to lead a pretty normal life. I’ve found that eating small, frequent meals helps, especially for the gas and bloating that comes with UC. It’s embarrassing, especially for women I think, to talk about their bathroom habits, so we just stay quiet about it. I can’t just take a supplement or eat a special diet and POOF, I’m healed! This is a life-long disease. You don’t know how strong you are until you have to be.”
4. Lindsay, 35: “I want people with UC to know that it’s not your fault.”
“I was diagnosed with UC when I was 21. I had symptoms for two months in college, but waited until I could go home for Christmas break to see my family doctor. Those two months sucked. I didn’t have a local doctor and I was too embarrassed to talk to a friend or tell my mom just how bad it had gotten. I was having intense belly pain (like someone snuck tiny daggers into your digestive tract in an attempt to murder your colon), bloating, and blood and mucous in my stool. 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.”
5. Jessi, 24: “Most of us with autoimmune diseases cover up our pain so well.”
“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. Eventually I opted for J-pouch surgery (my final surgery to complete the process is scheduled for December 26), and currently I feel great. But before surgery, I was having a couple accidents a day, often at work or in my car because I couldn’t get to the restroom fast enough. I had to wear children’s pull-up underwear everywhere I went, and I was unable to go out to eat, go to church, attend meetings, or go on vacation. I had severe abdominal pain and had to take pain medication nightly. It felt like I was constantly being kicked in the gut. I’d wake up about five times during the night to go to the bathroom, so I was always tired.
I wish people knew that UC isn’t IBS. It’s so much more than that. It’s crippling fatigue, extreme anxiety about publicly soiling yourself, and worrying about what to wear to cover up your diaper. It’s constant, excruciating cramps. It’s forcing yourself to eat, even when you know you’ll be in the bathroom five-minutes later, doubled-over on the toilet. 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.”
6. Heather, 32: “I’d describe the pain as a combination of labor, getting repeatedly stabbed in the abdomen and rectum, and like someone has your colon in a vice grip.”
“I was 25 when I was finally diagnosed with ulcerative colitis. I’d been having symptoms for more than five years before my diagnosis: severe diarrhea (up to 30 times a day), pain, blood and mucous in my stool, urgency, vomiting, and overwhelming fatigue. 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. During that visit, a CT scan showed damage to my colon, and I was booked for a colonoscopy to confirm the diagnosis.
Now I’m in remission, but I use the term loosely. During my last colonoscopy, there were no signs of active inflammation, but there is significant damage from previous flares, and I still have pretty severe symptoms depending on the day. My bathroom [habits] can swing from constipation to 10 or more bowel movements a day, but I’m no longer bleeding with each bowel movement. The nausea, occasional vomiting, and fatigue have unfortunately never gone away, and I still have gastrointestinal pain regularly. I’d describe the pain as a combination of labor, getting repeatedly stabbed in the abdomen and rectum, and like someone has your colon in a vice grip.
I’m currently on an infusion medication every four weeks. Over the last several years I’ve been on [everything from steroids to chemotherapy pills], all of which failed or caused allergic reactions. 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.’ It has affected every single part of my life, and the symptoms have extended well beyond the walls of my bathroom and the confines of my colon. When I tell people about my disease, I’ve had a range of reactions from ‘Huh’ to ‘Oh, is that contagious?’ 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). UC patients often feel embarrassed to discuss their disease due to the stigma surrounding one’s bathroom habits, and after years of trying to hide it, I’m not anymore. Yep, I use the bathroom way more than ‘normal’ people, and some people might think my symptoms are disgusting. But my battle with UC is a part of me, and you can either deal with it and deal with me talking about it, or you don’t need to be a part of my life.”
7. Madison, 24: “Occasionally the pain is so bad it feels like a knife in my lower abdomen.”
“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 a flexible sigmoidoscopy and 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. Meanwhile, you have urgency and cramping that doesn’t let up, and waves of fatigue and nausea that make it difficult to function normally. 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. And just because I take medication to keep my disease mostly under control, I still have bad symptom days.”
8. Ginny, 28: “The pain can be bad enough to take my breath away, and I live under a heating pad a lot of the time.”
“My last semester of college I noticed a change in my bathroom habits: frequent diarrhea, urgency, and blood in my stool. 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. My new symptoms included painful bloating, abdominal pain, rectal pain, and constant tenesmus (the feeling in my rectum that I had to ‘go’). I was finally able to get in to see a gastroenterologist, and he ordered a colonoscopy for shortly after my 22nd birthday. The procedure confirmed that I had ulcerative colitis.
Most recently my new doctor prescribed an eight-week course of steroids, nightly enemas, and a change in my anti-inflammatory drugs. This regimen has gotten me into remission, so now I only take the nine capsules of my anti-inflammatory a day (but I also keep some enemas on hand in case a flare starts). During a flare, I have frequent diarrhea, urgency, blood and mucous in my stool, painful bloating, abdominal cramps, rectal pain, and tenesmus. The pain can be bad enough to take my breath away, and I live under a heating pad a lot of the time. But now that I’m in remission, my symptoms are well-controlled except for some urgency.
UC impacts every aspect of my life. If I’m in a flare, I don’t feel like working out, and I’m too scared to be away from the toilet to even go for a leisurely walk. 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.”
9. Mandy, 27: “I don’t want to be known as that ‘sick girl.'”
“I had a colonoscopy over the summer while I was home from college, and was diagnosed then, when I was 22. I remember waking up and demanding apple juice and chocolate chip pancakes. The doctor briefly spoke with me and my dad, handed me a sheet with pictures of my intestines on it, and then wrote me a prescription. 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. This past summer, the pain was so bad that I would just writhe on the couch because no position was comfortable, and I cried out a few times. It’s exhausting. Once the pain passes, you’re completely wiped out.
I get tired really easily, and I’ve developed a unique talent for sleeping. The abdominal pain comes and goes depending on if I remember to take all the medications I’m supposed to take. 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. I also get extremely bloated after I eat, to where I look six months pregnant sometimes, and that can be really embarrassing. I’ve been out to dinner with friends and have to sneakily unbutton my pants to relieve the pressure from the bloating. I have what I call ‘trigger foods’ and right now those include corn, raw spinach, and any kind of melon. In the past it’s been lettuce, pineapple, and tomatoes. I also try 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. There are times where I feel like a failure because I can’t do what I once did before UC. I don’t want to be known as that ‘sick girl.’ I want people to know how much we need you to lean on, and I can guarantee that most people with UC will let you lean right back on them.”