Do you also have inflammation in your 'pouch'? Let's talk about pouchitis!

Have you ever had ileal pouch surgery? Or has someone you know had one? People with ileal pouch surgery can sometimes develop a condition called pouchitis. Although it can be a bit annoying, it's nothing to worry about. Let's talk about it in a simple way that you can understand.

What exactly is Pouchitis?

Simply put, pouchitis is inflammation of your ileal pouch . Let's take a look at what an ileal pouch is. For example, some people have a serious bowel condition that requires the removal of their entire colon and rectum. We call this surgery a total proctocolectomy. Then, they need to create a new way for waste, or stool, to pass out of their body. That's where the ileal pouch comes in. Surgeons use the end of your small intestine, the ileum, to create this pouch, which is like a small bag. This is your removed colon and rectum, which means it collects and holds stool for a while. This pouch is then connected to where the stool comes out. Sometimes it's connected to your anus, either as a J-pouch or an S-pouch, or as a K-pouch, which is connected to a special opening in your abdomen, called a stoma. In other words, part of your small intestine is now acting as your colon. So, pouchitis is the same as colitis – inflammation of the colon – or proctitis – inflammation of the rectum – but it occurs in people who have an ileal pouch. The symptoms are very similar. Symptoms may include stomach pain and the need to go to the toilet quickly and frequently. Most people develop 'acute pouchitis', which is an inflammation that comes and goes for a short time. However, for some, it can be a condition called 'chronic pouchitis', which is persistent or comes and goes.

How common is pouchitis?

It is estimated that between 25% and 45% of people who have had ileal pouch surgery will develop pouchitis at some point in their lives . About 40% of people will develop it for the first time each year. Also, between 10% and 20% will develop it again.

What are the symptoms of Pouchitis?

If you have pouchitis, you may experience symptoms like these.

• Lower abdominal pain and limping.
• Needing to go to the toilet quickly and frequently.
• Having to get up to go to the toilet at night.
• Difficulty controlling bowel movements (bowel incontinence), which means a slight leak.
• Difficulty passing stools, straining (dyschezia).
• Feeling like you need to go to the toilet, but not being able to go (tenesmus).
• A little blood in the stool.
• Fever or feeling cold.

What are the causes of pouchitis?

Doctors think that the main cause of pouchitis is a change in the types of gut bacteria that live in your pouch. Think about it, when part of your small intestine is now functioning like a large intestine, it is exposed to new types of bacteria. These new bacteria compete with the bacteria that were there before. This causes your immune system to think, "Oh, there's an infection here," and then it responds by causing inflammation. Some people actually have an infection. Some types of bacteria in our intestines, if given the chance, try to control the others and become king. These are called "pathogenic bacteria." Normally, having a few of these bacteria in our intestines is fine, because other good bacteria keep them in check. But after ileal pouch surgery, this balance changes, and those "bad" bacteria have a new opportunity to spread their power. It is common to develop pouchitis for a short time after ileal pouch surgery. This is called early-onset pouchitis, and it is considered a side effect of the surgery. It often gets better with antibiotics. But it can come back. For some people, it keeps coming back. This is because some types of bacteria keep dominating others. You may have several episodes of acute pouchitis, and each time you can get better with antibiotics. The problem becomes a little more complicated when you have more than a few episodes a year. Some people become dependent on antibiotics – this is called chronic antibiotic-dependent pouchitis (CADP). For others, antibiotics gradually stop working. This is called Chronic Antibiotic-Resistant Pouchitis (CARP).

What factors influence chronic, antibiotic-resistant pouchitis (CARP)?

There are several reasons that can contribute to this 'CARP' condition. Some of them are:

• Inflammatory Bowel Disease ( IBD ): People who have had a proctocolectomy for IBD, such as ulcerative colitis or Crohn's disease , are at a higher risk of developing pouchitis. The same factors that caused their original condition can affect the pouch.
• Antibiotic -resistant bacteria: SomeBacterial infections , such as C. difficile, are resistant to antibiotics. With continued use of antibiotics, bacteria that normally do not cause disease can become resistant to antibiotics. This can also cause an imbalance of bacteria in the pouch.
• Other infections: Sometimes a viral infection, such as cytomegalovirus, or a fungal infection, such as candidiasis, can also cause inflammation of the pouch.
• Immunosuppression: Your immune system may be weakened by certain pre-existing conditions or medications you take, making you less able to fight infections.
• Continued use of NSAIDs : Taking painkillers called 'NSAIDs' (nonsteroidal anti-inflammatory drugs) like 'Aspirin' and ' Ibuprofen ' frequently and excessively can damage the lining of your intestines and the lining of the 'pouch'.
• Reduced blood supply (Ischemia): Although rare, inflammation can also occur due to reduced blood flow to a part of the body. This can be due to a blockage in the blood vessels that supply blood.
• Primary Sclerosing Cholangitis (PSC): This is an autoimmune disease, meaning that the body's own immune system attacks its own cells. It causes chronic inflammation in your biliary tract. Like IBD, the mechanisms that cause this chronic inflammation can also affect the pouch. People with this disease are at a higher risk of developing pouchitis.

What are the possible complications of pouchitis?

Acute pouchitis rarely causes major complications. However, persistent, untreated pouchitis can cause problems. These can include:

• Changes in bowel habits: Inflammation of the pouch can make it difficult to hold stool in, and swelling can make it difficult to pass stool. This can affect your long-term bowel habits.
• Reduced quality of life: Having constant problems going to the toilet can be difficult to live with. It can cause physical and mental stress, and can interfere with enjoying a social life.
• Pouch stricture:Chronic inflammation can cause scarring of the pouch. This scarring can narrow the opening of the pouch. It can also reduce blood flow to the pouch, hindering the healing process.
• Erosion: Long-term inflammation can cause the lining of the pouch to erode, forming ulcers. These ulcers can bleed. Some types of pathogenic bacteria can also damage the intestinal wall.
• Malabsorption and malnutrition: When the inner layer of the pouch is damaged, the ability to absorb nutrients from the food inside it is reduced (malabsorption), which can lead to malnutrition.
• Pouch failure: When problems with the pouch persist, it can eventually become unusable. This may require surgery to remove the pouch and divert the bowel into an ileostomy.

How is Pouchitis diagnosed?

Diagnosing pouchitis starts with talking about your symptoms and health history. Then, your doctor will look inside your pouch. They will use an instrument called an endoscope . This is a thin tube with a small camera attached. They will pass it through the pouch to look for inflammation or other abnormalities. They will also take a tissue sample (biopsy) through the endoscope and examine it to find out what might be causing the condition. Your doctor may also use other imaging tests to look at the outside of the pouch and the structures that are connected to it. This is done to look for other conditions that may be involved. Additional tests that may be done include:

• Contrast pouchography (pouchogram): This is a type of X-ray. A contrast fluid is injected into the pouch to make it more visible. It is similar to a barium enema, but this is done on the ileal pouch.
• CT scan.
• MRI scan (MRI).

How to cure pouchitis?

The first-line treatment for acute pouchitis is a two-week course of antibiotics . Most people get better with this. If you don't get better with this, your doctor will try a different antibiotic, or a combination of antibiotics, for a longer period of time. If you still have symptoms after four weeks, you may have antibiotic-resistant pouchitis. Your doctor will then need to do more tests to look for other possible causes before deciding on the best treatment.

What are the treatments for recurrent pouchitis?

If acute pouchitis resolves with treatment and then recurs, your doctor will continue the same treatment. If the treatment is working and the symptoms don't recur frequently, the same treatment is used. However, if it recurs more than three times a year, doctors consider it chronic antibiotic-dependent pouchitis. It is treated with long-term maintenance therapy to prevent recurrence. Maintenance therapy may include:

• Antibiotics: Taking antibiotics at low doses can help prevent recurrence.
• Probiotics: These are supplements that contain beneficial bacteria that live in our intestines. They can help restore the balance of bacteria in the pouch and fight off pathogenic bacteria.

What are the treatments for chronic, antibiotic-resistant pouchitis (CARP)?

If your pouchitis has never gotten better with antibiotics, or if it has gotten better in the past but is not getting better now, doctors call it chronic antibiotic-resistant pouchitis (CARP). In this case, the doctor will first look for any underlying causes, such as a secondary infection, an autoimmune disease, or a structural defect in the pouch. If no clear cause can be found, they will treat chronic pouchitis in the same way as they treat inflammatory bowel disease (IBD). Here are some possible treatments:

• Mesalamine enemas: Mesalamine, also known as 5-aminosalicylic acid (5-ASA), is a first-line medication for ulcerative colitis. It comes as an enema that you insert into a pouch.
• Bismuth enemas: Bismuth subsalicylate, the active ingredient in Pepto Bismol®, also comes as a foam enema (bismuth carbomer). This may help reduce your symptoms.
• Corticosteroids: These are a type of anti-inflammatory medication used to treat chronic inflammation.
• Immunosuppressants: These medications reduce your immune system's response. Doctors prescribe these when your immune system is causing chronic inflammation.
• Monoclonal antibodies (biologics): Monoclonal antibodies are man-made proteins that work like human antibodies, boosting your natural immune response against infections.
• Small molecules: These are new drugs that work like monoclonal antibodies, but they are synthetically made.
• Fecal microbiota transplant: This treatment is approved by the US Food and Drug Administration (FDA) to treat antibiotic-resistant C. diff. However, it can also be used off-label to treat antibiotic-resistant pouchitis, even if it is not caused by C. diff. It helps restore a healthy gut microbiome.

How long does it take for pouchitis to heal?

Symptoms of acute pouchitis usually start to improve within a few days of starting antibiotic treatment. However, it is important to finish the full two-week course of antibiotics, even if you feel better. You should see your doctor after the treatment is over. They will want to look inside your pouch again to make sure the inflammation has completely gone.

Can Pouchitis be prevented?

Some evidence suggests that probiotics may help prevent pouchitis from developing after surgery or from returning after successful treatment. They may not always work, but they may work for you. Doctors sometimes prescribe a special probiotic blend (such as the DeSimone formulation). The type of probiotic you take is important, so it's important to talk to your doctor.

What can you expect if you develop pouchitis?

If you develop pouchitis after ileal pouch surgery – even if it happens a few times – there is a good chance that it will be successfully treated with antibiotics. Some people may need a longer course of antibiotics than others. If you have frequent episodes, you may need long-term treatment with antibiotics or probiotics. For a small number of people with pouchitis, none of these treatments may work. If you continue to have pouchitis and it does not respond to antibiotic treatment, your doctor will look for underlying causes of inflammation, such as ischemia, NSAID use, or an autoimmune disease. If they can't find a secondary cause, they'll diagnose it as chronic antibiotic-resistant pouchitis (CARP). Doctors will suggest a variety of treatments for CARP. They'll work with you to find the one that's best for you.

Sometimes, if the problems with the pouch outweigh the benefits, you may decide to remove the pouch to live a disease-free life. That's also an option.

Does food and drink affect pouchitis?

Yes, to some extent. Some evidence suggests that if your diet is low in antioxidants , you may be at increased risk of developing pouchitis. Antioxidants are naturally found in many fruits and vegetables. These compounds help neutralize chemicals in our bodies called free radicals. When free radicals accumulate in the body, they can damage cells and contribute to inflammation. Antioxidants from food are more effective than supplements. On the other hand, if you are suffering from pouchitis symptoms, reducing the amount of fiber in your diet may help. Doctors recommend a low-FODMAP diet . This reduces the amount of foods your gut bacteria like to eat, including fiber. Cutting out these foods temporarily may help reduce your gut symptoms. But in the long run, you should try to add a variety of foods back into your diet.

Foods that help prevent pouchitis:

Make sure you're getting enough antioxidants. You can get these by eating a variety of fruits and vegetables. Some of the best foods high in antioxidants are:

• Apple
• Berries (like strawberries, blueberries)
• Grapes
• Dried plums (Prunes)
• Types of beans
• Artichokes
• Russet potatoes
• Dark green leafy vegetables (like spinach, kale)

Adding whole foods to your diet, especially plant-based foods, is a key principle of an anti-inflammatory diet. Antioxidants are just one reason.

Foods not to eat when you have pouchitis (to reduce symptoms):

To reduce pouchitis symptoms, doctors recommend a low-FODMAP diet, at least until you figure out which FODMAPs you are allergic to. Common FODMAPs include:

• Fructose (sugar in fruit)
• Lactose (sugar in milk)
• Onion
• White onion
• Types of beans
• Wheat

The low-FODMAP diet is a short-term elimination diet. You eliminate certain foods from your diet, find out what triggers them, and then gradually reintroduce them under the guidance of a doctor.

Finally, the take-home message

If you have an ileal pouch, you may experience pouchitis at some point. Not everyone gets it, but those who do may get it more than once. It can be frustrating to have ongoing bowel problems even after having most of their colon removed. The good news is that for most people, pouchitis is only an occasional problem, and it's much easier to treat than the chronic bowel conditions they may have previously suffered from. Chronic antibiotic-resistant pouchitis (CARP) is a bit trickier. Sometimes, it can be related to a pre-existing chronic bowel condition. Treating it can be just as complicated. But with a little bit of experimentation, you can find a combination of treatments that work for most people. Remember, you're not alone. Talk openly with your doctor and ask any questions you have. With the right guidance and treatment, you can live well with this condition.