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Top Questions to Ask Your Doctor About Advanced Treatment Options for Ulcerative Colitis


Top Questions to Ask Your Doctor About Advanced Treatment Options for Ulcerative Colitis

If you've had ulcerative colitis (UC) for a while, you know that this inflammatory bowel disease (IBD) can be a roulette game of symptoms that can come and go unpredictably. But if lately you've been noticing that your trips to the bathroom have been increasing in number and urgency and your flare-ups are getting more intense or more frequent, it's a signal to talk to your doctor about what next steps could be in your treatment plan to get you the relief you need.

We'll help you get the conversation started: We went to gastroenterologists who specialize in treating UC to field the top questions to ask so that your symptoms are addressed.

According to the American Gastroenterological Association (AGA), most people with UC are considered to have a mild-to-moderate case of this autoimmune condition which causes inflammation in the large intestine (a.k.a. colon) and rectum. Per the AGA, a couple key defining features of these UC warriors is that they have no more than four to six bowel movements per day and mild or moderate rectal bleeding.

But if your current UC meds -- which likely include an aminosalicylate (5-ASA) drug to quell inflammation in the colon when you're in remission, and an occasional course of steroids to treat flares -- are no longer managing to keep your symptoms in check, this is one of signs that it may be time to re-evaluate your treatment plan.

Moderate-to-severe UC is characterized as having more than six stools daily, with these being frequently bloody, and frequent urgency to go; having anemia and moderate-to-severe inflammation in the colon round out the check list. "Meeting these criteria is exactly when we would talk about switching medications, likely transitioning away from 5-ASA's to small molecule drugs or biologics," says Michael Schopis, M.D., a board-certified gastroenterologist at Manhattan Gastroenterology in New York City.

Your symptoms of frequent bloody stools tell part of the story, but your doctor will also go by certain lab work and imaging to get the full clinical picture in order to be certain of the status of your UC.

If your symptoms have gotten much worse, your doctor will first order a stool sample to rule out any C.diff bacterial infections, which are common among people with UC, says Sandhya Shukla, M.D., a board-certified gastroenterologist with Atlantic Coast Gastroenterology Associates in Brick, NJ.

Then, they'll order a new colonoscopy and compare it to your previous colonoscopies to determine whether or not more area of the colon is inflamed. "There are some objective measures that we use, like the Ulcerative Colitis Endoscopic Index of Severity, UCEIS, which is scored from 0 to 8, with 8 being the most severe," explains Dr. Shukla. "We also will take the amount of the surface area of the colon that's inflamed, the level of bleeding, ulcers, and erosions, into consideration to tell what's severe."

UC can affect just the rectum, the colon up to where it bends by the spleen (called left-sided disease), or the inflammation can span the entire colon (called pancolitis), explains Dr. Shukla. Your doctor will take all of these factors into consideration, plus blood work that indicates the level of inflammation markers, and a UCEIS score that's in the 7 to 8 range, to diagnose UC as progressing to severe and in need of a biologic treatment or steroids.

Within the past couple decades, people with moderate-to-severe UC have had more options than ever before to get their disease under control -- and their daily lives back. Per the Crohn's & Colitis Foundation (CCF), two newer types of UC medications work to target the proteins, called cytokines, that cause inflammation in the colon: oral small molecule drugs and injectable biologics. Small molecule drugs are synthetic, while biologics are derived from biologic sources.

There are two types of small molecule medications for UC:

There are three classes of biologic medications for UC:

For severe UC cases, biologics are often the first thing doctors will prescribe because they can help you get better faster. "Traditionally, most biologics have been shown to have higher efficacy and work faster than S1P receptor modulators, so if someone is sicker, we may use biologics first," says Dr. Schopis.

He adds that JAK inhibitors medications can't be prescribed in the U.S. unless you have already tried a biologic to treat your moderate-to-severe UC like a TNF-antagonist and it hasn't worked or you have a contraindication to it. Other than that, your lifestyle and preferences matter in the decision. "We discuss the route of administration with the patient, which becomes important to see what they can tolerate long-term [in terms of injections versus oral medications], but we also want to consider drug efficacy and side effects, which drive what med we may use," Dr. Schopis says.

This question is top of mind for most anyone in your position -- understandably, you want to get to the peace of mind and freedom from pain that remission brings. "Most doctors will tell you that they will try a medication for at least a couple of months to see whether symptoms subside, and may check in to see your progress after a couple of weeks," says Dr. Schopis. They may put you on the drug as you are finishing a course of steroids for a flare.

"Your level of improvement can depend on the severity of your UC diagnosis, and the strength of the treatment," says Dr. Schopis. He notes that some people might see benefits -- like less cramping and fewer bowel movements -- after a couple of weeks on any UC medication, but "for other people, it might take around 10 to 12 weeks to feel relief."

Getting the facts on side effects is crucial so that you know what to look out for. "There's a lot of fear around medications that can suppress the immune system in one way or another, especially given that they are often lifelong treatments for UC," says Dr. Schopis.

Your doctor should go over with you the side effects of whatever medication they prescribe; side effects are often specific to the drug you're taking, but immunosuppressants in general come with an important caveat: "With certain biologics like infliximab, along with JAK inhibitors, S1 receptor modulators, and interleukin-23 antagonists like risankizumab and mirikizumab, you'll have to be closely monitored for side effects like elevated liver enzyme levels, which can signify liver damage," Dr. Schopis explains.

According to the Crohn's & Colitis Foundation, some other side effects of biologics may include :

The goal of UC treatment is for you to enter into remission and feel much better, symptom-wise. For your gastroenterologist an important aspect of remission for medication-treated UC is endoscopic remission, in which the colon looks clear, with minimal ulcers showing on a colonoscopy, explains Dr. Schopis.

Histologic remission is also key, where there is no inflammation in the colon mucosa showing under a microscope after a biopsy. It's ideal for everyone to get to this checkpoint, but it depends on the stage and severity of the UC. "Most gastroenterologists would like to see this, but it's not feasible in every case, especially severe cases of UC," says Dr. Shukla. "We try to find a balance as long as patients are in clinical remission and endoscopic remission. Some of the newly developed medications need at least six to 12 months to work on inflammation of the colon in order to reach histologic remission, which is still an important goal."

Clinical remission, or reduction of your symptoms, is also essential. You'll be looking for a decrease in things like diarrhea, urgency to go to the bathroom, and blood in stool. But clinical remission can be deceiving in that you might feel better even if there's still active inflammation in your colon, says Dr. Shukla. "Instead, we aim to treat until the patient feels better and biopsies show that inflammation has gone," she says. Your gastro will help you target each individual symptom and its root cause until you can whittle each one down to feeling -- and actually showing internally -- much better.

As for how long you can expect to remain in remission, our experts say it's different for each person, their UC severity, and their course of treatment. But Dr. Shulka has seen some encouraging results that advanced treatments can produce remission that lasts years.

Your doctor will continue to monitor you with labwork and other tests to keep tabs on how well your treatment is working.

It's natural to be worried when your UC is progressing to the moderate-to-severe level whether the damage to your colon will continue. But you can take heart that, with the advent of newer and advanced treatments for UC, the five-year cumulative risk for someone with any stage of UC requiring surgery for the condition is 7%, according to one 2022 meta-analysis. "Surgery is almost like a last resort in the modern era of biologics for ulcerative colitis," says Dr. Shukla. "Failure of medical therapy to control a flare is uncommon nowadays since we have so many new, successful treatment options."

Working closely with your doctor can help you find the right treatment fit for your ulcerative colitis to get you to remission with UC -- and keep you there longer.

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