Everything You Need to Know About Ulcerative Proctitis

When you’re dealing with uncomfortable (or downright painful) GI symptoms, from feeling an urgent need to go to seeing blood in the toilet, the signs might point to an inflammatory bowel disease like ulcerative colitis. However, up to 30% of people diagnosed with ulcerative colitis might actually have a limited form of the condition known as ulcerative proctitis, according to the Gastrointestinal Society.

Both ulcerative proctitis and ulcerative colitis are autoimmune conditions that fall under the umbrella of inflammatory bowel disease (IBD), which also includes Crohn’s disease. In proctitis, inflammation causes swelling that begins at the rectum (the portion of your GI tract that holds stool before it passes through the anus) and spreads no more than six inches into the inner lining of your colon (the longest part of your large intestine). Colitis, on the other hand, can affect a larger part of the colon or the entire colon, leading to a wider range of symptoms that may also feel more severe, per the Crohn’s & Colitis Foundation.

According to a 2018 review of research published in the journal Digestion¹, ulcerative proctitis is considered to be an initial manifestation of ulcerative colitis—so preventing further aggravation of the condition is key. Not sure what’s going on in the bathroom? Here’s everything you need to know about ulcerative proctitis, including signs to watch for, how to get a diagnosis, and what treatment looks like.

According to the Mayo Clinic, symptoms of ulcerative proctitis may include:

1. Rectal bleeding when going to the bathroom
2. Rectal pain when having a bowel movement
3. The urge that you need to have a bowel movement right away
4. A feeling of fullness or like you constantly need to have a bowel movement
5. Diarrhea that is sometimes followed by constipation and straining of the rectal muscles
6. Blood and mucus in well-formed stools
7. Pain on the left side of your abdomen

“The rectum serves a purpose,” Eugene J. Yoon, M.D., a gastroenterologist at Providence St. Jude Medical Center, tells SELF. “It’s a pliable and stretchy part of the GI tract, which allows us to hold poop in.” But when the rectum is inflamed due to a condition like ulcerative proctitis, “it doesn’t have that stretchiness or elasticity, so you feel like you’ve got to go. You might go to the restroom on an hourly basis, but not much comes out.”

Symptoms of ulcerative colitis, on the other hand, can involve the entire colon or at least a larger portion of it, per the Mayo Clinic. This can result in a wider range of side effects throughout the entire body, including:

• Diarrhea
• Abdominal cramps
• Nausea
• Weight loss
• Anemia
• Blood, mucus, or pus in bowel movements
• Joint pain
• Fever
• Skin rashes
• Mouth sores
• Red, painful eyes
• Loss of fluids and nutrients
• Liver disease

The disease is thought to be an over-activation of the immune system, although experts still don’t know why this happens in certain people and not others, Robert Lerrigo, M.D., associate chief of gastroenterology and hepatology at Santa Clara Valley Medical Center, tells SELF.

The immune system and digestive system are a lot more connected than you might think: Your gut has one of the largest populations of immune cells in your body, Dr. Lerrigo says. It’s also home to roughly 100 trillion microorganisms (mainly bacteria, both good and bad), which help break down the food you eat, influencing various processes throughout your entire body.

But sometimes, “normal bacteria that are supposed to help digestion and regulate our immune system cause it to go haywire, which creates local inflammation in the colon,” Dr. Lerrigo says. “The general thinking is that in all forms of inflammatory bowel disease, the immune system is dysregulated.”

Autoimmune diseases lead to a consistent state of inflammation because your body mounts a prolonged response against a perceived “threat,” spurring persistent symptoms as it malfunctions and mistakenly attacks healthy parts of the body, according to the U.S. National Library of Medicine.

There may be a genetic component behind the condition. Having a family history of any type of IBD makes it more likely that you’ll develop this wonky immune response in the GI tract, according to the Centers for Disease Control and Prevention (CDC).

Getting treated for ulcerative proctitis can ease symptoms and even lead to remission, meaning you may not experience symptoms for a certain period of time, but that’s not quite the same thing as a cure.

Progression of the disease can happen, but it’s not super common, although being younger at the time of your diagnosis (around 13 years old or younger) “tends to be a risk factor for more severe disease throughout life,” adds Dr. Lerrigo.

Less than 15% of people with ulcerative proctitis go on to develop full-blown ulcerative colitis, according to the National Organization for Rare Disorders (NORD). “A majority of the time, people with ulcerative proctitis just have ulcerative proctitis. It doesn’t necessarily progress to other areas of the colon,” Dr. Yoon says. “In most people with IBD, wherever the disease is located, it usually stays in that area.”

Because the symptoms of ulcerative proctitis can easily be confused with other issues, like the effects of irritating enemas and laxatives or long-term trauma to the anus and anal canal, per NORD, it’s important to see a doctor to ensure you’re getting a proper diagnosis. If you’re experiencing rectal bleeding on a regular basis—say, more often than not when you have a bowel movement—Dr. Yoon suggests getting checked out to rule out other GI conditions or, in very rare cases, colorectal cancer.

First, your doctor will get a detailed history of your symptoms. Then, according to the Mayo Clinic, these are some of the tests and procedures they may turn to in order to confirm a diagnosis:

1. Blood or stool tests to look for blood loss or signs of infection, which can trigger an ulcerative proctitis flare.
2. Flexible sigmoidoscopy, a procedure in which the rectum and lowest part of the colon are examined. At the same time, the doctor can take tissue samples for laboratory analysis.
3. Colonoscopy, which allows the doctor to view the entire colon using a thin, flexible, lighted tube with an attached camera. Tissue samples can be taken during the procedure.
4. Tests for sexually transmitted infections (STIs), which involve taking a sample of discharge from your rectum or urethra. This is done to rule out an STI as the cause of inflammation in the rectum.

Ulcerative proctitis is usually very responsive to treatment, says Dr. Yoon. Your doctor will likely start by prescribing topical therapy, which means you’ll either use a suppository (a lubricated “pill” that goes in your rectum) or an enema (an injection of fluid into the rectum) with an anti-inflammatory medication called mesalamine.

Dr. Yoon explains that the recommendation is to either use it every single night or at least two or three times a week just to keep the inflammation from coming back. If it works, you should ideally continue using it every night moving forward.

“But in a practical sense, most people don’t want to do that. People with ulcerative proctitis are usually young, in their 20s, so getting them to use a suppository for the rest of their life is wishful thinking,” Dr. Yoon says. “I have patients do it for four weeks and if they’re feeling fine and symptoms are mild, they can go ahead and stop. In the future, if they start bleeding again, they can do it for another four weeks.”

Treatment for ulcerative proctitis can also include corticosteroids, such as prednisone or budesonide, which help reduce inflammation. Treating ulcerative colitis in general can involve immune system suppressors, like the pill azathioprine, and biologics, which are antibodies given via IV infusion or an injection that stop certain proteins from causing inflammation, according to the Crohn’s & Colitis Foundation.

It’s important to note that managing ulcerative proctitis is not a one-size-fits-all approach, as it really depends on a person’s immune system response and personal risk factors for developing severe disease over time, Dr. Lerrigo explains.

“There are different immune pathways that can be activated, and we have medicines to target multiple pathways,” Dr. Lerrigo says. Of course, it would be great if a doctor could instantly tell which medication would work for every individual with ulcerative proctitis, but the science hasn’t caught up yet. “We just don’t have a biomarker to tell us that, but we’re getting there—to a more personalized approach to treatment,” Dr. Lerrigo says.

Because ulcerative proctitis is a chronic condition, you will always need to take medication to keep symptoms under control, which can potentially lead to other issues. “If you take any medication long enough and in a high enough dose, there can be side effects, so we have to be mindful of that,” Dr. Lerrigo says. For example, certain medications can reduce the responsiveness of the immune system, which can put you at a higher risk for other infections when taking them.

There is also the potential for your treatment regimen to completely change without warning. “A patient may respond to one particular type of drug for five years, then out of the blue, the inflammation pathway changes and that drug no longer works, so we have to try a different drug,” says Dr. Lerrigo.

When symptoms don’t improve and start to severely impact your quality of life, your doctor may recommend surgically removing the damaged portion of your digestive tract to ensure the inflammation is gone, which is typically reserved as a last resort, Dr. Lerrigo says.

Remember, ulcerative proctitis is an autoimmune disease, meaning you didn’t do anything to cause it. “Even in remission, there’s a risk of disturbing the very fine balance within the colon that can tip a flare-up,” Dr. Lerrigo says. “It’s not the patient’s fault.”

However, he says there are a few things you can do to try and support a healthier GI tract. (Still, overall gut health is something scientists are just starting to understand and there are lots of unknowns, so keep in mind there’s more research to be done.)

The “perfect” diet doesn’t exist because each person has unique nutrition needs, explains Dr. Lerrigo. That’s why most of his patients work with a registered dietitian. However, experts do know that a diet that closely mimics the Mediterranean diet, one that is focused on fiber-rich whole grains, leafy vegetables, nuts, legumes, lean proteins like chicken and fish, and some dairy if you tolerate it, “promotes a healthy gut ecosystem² and reduces the risk of ulcerative proctitis flares,” Dr. Lerrigo says.

He also recommends getting plenty of exercise and doing your best to manage stress, both of which can impact the immune system.

Frequent bleeding due to ulcerative proctitis can lead to anemia, a condition where you don’t have enough red blood cells to carry oxygen to the various tissues in your body, or iron deficiency, says Dr. Yoon. According to the National Institutes of Health (NIH), if your proctitis isn’t treated or doesn’t respond to treatment, complications can also include:

• Rectal stricture, which is an abnormal narrowing of the rectum
• Ulcers, or sores in the lining of the intestines
• Colon cancer

Progression to ulcerative colitis can also lead to other complications. “With any severe inflammation, there’s a risk for perforation of the colon wall, which weakens the whole colon,” says Dr. Lerrigo. This means long-term inflammation of the colon has compromised the intestine wall so much that a hole forms, which can be very dangerous, as bacteria can infiltrate places it shouldn’t be and cause an infection³.

“Chronic inflammation in any organ for a long period of time causes damage at the cellular level, increasing the risk of colon cancer,” Dr. Lerrigo adds. That’s why he recommends colonoscopies every year to two years for people who have progressed to ulcerative colitis and have had severe symptoms for many years.

With the right treatment, though, ulcerative proctitis doesn’t have to take over your life.

Just to recap: Ulcerative proctitis is a form of ulcerative colitis, making it part of the IBD family. The condition can be a (literal) pain in the butt, but you can get your symptoms under control with the help of a gastroenterologist. Don’t worry, they’ve heard it all when it comes to bowel issues, so don’t be afraid to speak up and start your journey to better health (and more productive trips to the bathroom).

Sources:

1. Digestion, Optimized Management of Ulcerative Proctitis: When and How to Use Mesalazine Suppository
2. BMJ, Mediterranean diet intervention alters the gut microbiome in older people reducing frailty and improving health status: the NU-AGE 1-year dietary intervention across five European countries
3. Crohn’s & Colitis Foundation, Fact Sheet: Intestinal Complications

Related:

• 7 Things No One Tells You About Life With Ulcerative Colitis
• Here’s How You Could Accidentally Be Making Your IBS Worse
• 6 Types of Foods That Could Make Your Ulcerative Colitis Symptoms Worse