“The longer ulcerative colitis smolders, the harder it is to rein it back in,” says Nirupama Bonthala, MD, a physician and researcher at Cedars-Sinai in Los Angeles who specializes in inflammatory bowel diseases (IBD). “One of the biggest things we see over and over again is patients who don’t get fully treated, and then their illness progresses to something that could have been stopped or controlled a long time ago.” For example, Dr. Bonthala explains that early on, a person’s ulcerative colitis may be able to treated with less powerful (but still effective) medications that have fewer side effects, such as aminosalicylates. But these medications may not work for people whose disease has gone untreated for longer periods, since there may be more inflammation, she explains. As the disease progresses, “You may need stronger medicines than you would have needed initially,” Bonthala says. “Then, even if we try a strong medicine, there’s no guarantee that it will work, which can force surgical intervention.” Here are some of the risks of untreated (or undertreated) ulcerative colitis that can have long-term implications.
1. You could develop chronic fatigue.
“When you have active inflammation, [it’s like] your body is running a marathon,” Bonthala says. “You waste a lot of energy.” Research backs this up: A study published in the March 2020 issue of the Journal of Crohn’s and Colitis found that people who were in remission reported less fatigue than people with active ulcerative colitis or Crohn’s disease, another type of IBD.
2. Your immune system may suffer.
Inflammation can put constant stress on your body, which makes you vulnerable to infections and other illnesses. “Your body is putting in so much energy to try to keep the inflammation under control that it really doesn’t allow your body to do the normal housekeeping things it’s supposed to do,” Bonthala explains. “So people have a harder time fighting off illnesses and are more susceptible to catching other infections.”
3. You may have an increased risk of colorectal cancer.
When there’s inflammation in the colon, the cells in the lining of the colon continuously turn over to try to repair the damage, explains the Crohn’s & Colitis Foundation. This constant turnover can increase the odds of a mutation occurring that can lead to cancer. If there are any irregular polyps or growths in your colon, unchecked inflammation can make it difficult for your doctor to spot them during a colonoscopy. “You really want to have a clean slate when you do a colonoscopy, so your doctor can be sure everything looks good,” Bonthala says.
4. You may have an increased risk of osteoporosis.
The reason undertreated and untreated ulcerative colitis can lead to osteoporosis is twofold, according to Bonthala. One is that active inflammation “steals” from the bones. “Patients are in the bone-building phase of their life until their mid-30s, so if you have active inflammation, you’re depleting nutrients from your bones, and you’re not absorbing a lot of the nutrients your bones need,” she explains. The second reason: Flares that arise from poorly managed ulcerative colitis are often treated with steroids, which themselves can lead to osteoporosis. “I get a lot of referrals for bone density tests in ulcerative colitis patients in their early 20s,” she says.
5. You may have an increased risk of miscarriage and other pregnancy complications.
Bonthala notices that many of her patients who are pregnant or trying to conceive are wary of taking medications to treat their ulcerative colitis, citing concerns about how the treatment may affect their baby. “It’s important to put out there that the vast majority of medications are safe for pregnancy and for breastfeeding — with only a few exceptions,” she says. A bigger risk to pregnancy? Untreated IBD. In fact, a September 2020 review published in the journal Digestion found that active IBD is associated with an increased risk of miscarriage, stillbirth, preterm delivery, low birth weight, and other pregnancy complications. The researchers found that women who have inactive disease before conceiving have pregnancy outcomes that are similar to women without IBD. If you’re trying to get pregnant, Bonthala recommends getting your ulcerative colitis under control first. If you’re already pregnant and are having a flare, seek treatment as soon as possible.
6. You could develop toxic megacolon.
If ulcerative colitis remains untreated, the inflammation can spread to the deeper layers of your colon and result in a very dangerous complication called toxic megacolon. This condition can lead to life-threatening infections, kidney failure, or a colon rupture and needs to be treated immediately. “At this point, there is really no other option for medical treatment than surgery,” Bonthala says. Surgery for toxic megacolon typically involves removing all or part of your colon.
How Do You Know if You’re Not Receiving the Right Treatment?
Anyone with a chronic condition such as ulcerative colitis should keep records of their care and closely monitor their symptoms. In particular, Bonthala recommends keeping an eye on your bowel movements, including the frequency, whether they are loose, if there’s blood or mucus present, and if you suddenly experience constipation — all of which could be signs that you need to change your treatment regimen. If you suddenly develop intolerances to foods you used to stomach just fine, that’s another sign that you may be undertreated. Bonthala says your doctor should monitor your inflammation levels by testing for high levels of C-reactive protein in your blood. Your doctor can also test your stool for fecal calprotectin, a substance that your body produces when your intestines are inflamed.
What Can You Do if You Believe You’re Being Undertreated?
First and foremost, Bonthala recommends developing your health literacy. “Dealing with chronic illness can be very overwhelming and daunting. There are a lot of medical terms and medications; it’s a lot to take in,” she says. She recommends using the Crohn’s & Colitis Foundation to learn more about your illness and find resources and medical professionals in your state to help you. If you believe you’re not receiving the right ulcerative colitis treatment and you’re concerned about your symptoms, Bonthala says it’s important to advocate for yourself. Doctors have the ability to tailor your treatments, depending on the severity and progression of your disease, so don’t be afraid to speak up and ask about other options if you feel your current treatment isn’t working. For her part, Bonthala is optimistic about treating ulcerative colitis. “I always tell my patients that we have the same goal: Get to full remission,” she says. “Outside of taking a pill or getting an infusion or injection, I want you to be like everybody else and live your life as if you don’t have this disease.”
