Untreated ulcerative colitis: 6 potential consequences

If you have ulcerative colitis, it is important to seek treatment immediately. Delaying treatment — or even downplaying your symptoms to your doctor — could turn a mild case into something much more serious.
“The longer ulcerative colitis smolders, the harder it is to control,” says Nirupama Bonthala, MD, a gastroenterologist at UCLA Health who specializes in inflammatory bowel disease (IBD). “One of the most serious things we see over and over again is patients who are not fully treated, and then their disease progresses to something that could have been stopped or controlled a long time ago.”
For example, in its early stages, ulcerative colitis can often be treated with gentler medications that have fewer side effects, such as aminosalicylates, a type of anti-inflammatory, says Dr. Bonthala.
But these medications might not work in people whose disease has gone untreated for long periods of time, because the inflammation might be more significant, she says. As the disease progresses, “you may need stronger medications than you initially needed,” says Bonthala. “Then, even if we try a powerful drug, there is no guarantee that it will work, which may require surgery.”
Here are some of the risks of untreated (or undertreated) ulcerative colitis and their long-term implications.
1. You might develop chronic fatigue
2. Your immune system may suffer
Inflammation can put constant stress on your body, leaving you vulnerable to infections and other illnesses. “Your body spends so much energy trying to control inflammation that it doesn’t really allow it to do the normal household chores it’s supposed to do,” says Bonthala. “This makes it harder for people to fight off illnesses and more likely to get other infections. »
3. You May Have an Increased Risk of Colorectal Cancer
If there are polyps or irregular growths in your colon, uncontrolled inflammation may make it difficult for your doctor to detect them during a colonoscopy. “You really want to start from scratch when you have a colonoscopy, so your doctor can be sure everything is OK,” says Bonthala.
4. You May Have an Increased Risk of Osteoporosis
According to Bonthala, the reason why undertreated or untreated ulcerative colitis can lead to osteoporosis is twofold.
The first reason is that active inflammation “steals” bone. “Patients are in the bone-building phase of their lives 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 says.
The second reason is that flare-ups resulting from poorly managed ulcerative colitis are often treated with steroids, which can themselves lead to osteoporosis. “I get a lot of referrals for bone density testing in patients with ulcerative colitis in their early 20s,” she says.
5. You May Have an Increased Risk of Miscarriage and Other Pregnancy Complications
Many Bonthala patients who are pregnant or trying to conceive are reluctant to take medications to treat their ulcerative colitis, she says. They share concerns about how these treatments might affect their babies.
“It is important to emphasize that the vast majority of IBD medications are safe during pregnancy and breastfeeding, with a few exceptions,” she says. A greater risk for pregnancy? Untreated IBD.
If you’re trying to get pregnant, Bonthala recommends getting your ulcerative colitis under control first. If you are already pregnant and have a flare-up, seek treatment as soon as possible.
6. You might develop toxic megacolon
“Right now, there’s really no other medical treatment option other than surgery,” says Bonthala. Toxic megacolon surgery usually involves removing all or part of your colon.
How do you know if you’re not getting the right treatment?
Anyone with a chronic illness such as ulcerative colitis should keep a record of their care and closely monitor their symptoms. In particular, Bonthala recommends monitoring your stools, including their frequency, whether they are loose, whether there is blood or mucus present, and whether 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 that you used to tolerate just fine, that’s another sign that you may be undertreated.
Bonthala says your doctor should monitor your inflammation levels by testing C-reactive protein levels in your blood. Your doctor may also test your stool for fecal calprotectin, a substance your body produces when your intestines are inflamed.
What can you do if you think you are outsourced?
Above all, Bonthala recommends developing your health knowledge. “Dealing with a chronic illness can be very overwhelming and intimidating. There are a lot of medical terms and medications; it’s a lot to take in,” she says. She recommends referring to the Crohn’s and Colitis Foundation to learn more about your disease and find resources and healthcare professionals near you.
If you think you’re not getting the right treatment for ulcerative colitis and your symptoms worry you, Bonthala says it’s important to advocate for yourself. Doctors have the ability to adapt your treatments based on the severity and progression of your disease. Don’t hesitate to speak up and ask questions about other options if you think your current treatment isn’t working.
For his part, Bonthala is optimistic about the treatment of ulcerative colitis. “I always tell my patients that we have the same goal: to achieve complete remission,” she says. “Aside from taking a pill or getting an infusion or an injection, I want you to be like everyone else and live your life as if you don’t have this disease.”
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