[DO NOT PUBLISH] Dealing With Pouchitis

Last updated: September 2022

I have pouchitis. Pouchitis is inflammation in the j-pouch. A j-pouch is a “fake colon” that is made out of the small intestine and sometimes the rectum. In my case, my colorectal surgeon took out my whole entire large intestine and created a j-pouch out of my small intestine and an inch of the rectum. It has grown and matured to the size of a softball. Around seventy percent of Crohn’s patients who have a j-pouch will get pouchitis once or twice in their lifetime.

What is pouchitis?

Pouchitis is the inflammation of the pouch. You can get inflammation from bacteria. Certain bacteria get in the pouch from different foods you consume.

What are the symptoms of pouchitis?

From my experience, I can tell when I have a bout of pouchitis. I have more urgency to use the bathroom. When I say urgency, I mean spasms in my rectum. The intensity of the spasms is really high. And the spasms are frequent. When I have pouchitis, I use the bathroom more than my baseline. I also have a lot more gas and bloating.

How do you get rid of pouchitis?

For one, you can call your stomach doctor. Sometimes they will do a sigmoidoscopy so they can see the inflammation inside the pouch. An easy fix once they identify pouchitis is an antibiotic. After a few days of Flaygal or Cipro you should start to feel better. Don’t get upset if pouchitis comes back once or twice more in your lifetime.

What is chronic pouchitis?

About thirty percent of Crohn’s patients have chronic pouchitis. I fall into this category. Because my Crohn’s was very progressive, my j-pouch develops pouchitis more frequently. No biggie! I just take Flagyl every single day. I take three Flagyl pills a day, and I rarely have any urgency issues. I would say, every six months, I might have to take an extra antibiotic to help me through the pouchitis. Is Flagyl the best for me? No, I can become “antibiotic-resistant,” but I will take my chances. I did try to cut down my Flagyl, but the urgency and more frequent bowel movements made me go back up. As of right now, I am good with my Flagyl.

By the way, if you ever have to take this drug, I am warning you now, it tastes horrible! Take it with something that will mask the taste. Just a word to the wise, do not drink more than a glass or two of alcohol. This drug does magnify the effect.

Dealing with both pouchitis and cuffitis

On top of having chronic pouchitis, I have another type of inflammation that surrounds the end tip of my rectum. This is called the “Cuff.” Because it’s of the cuff, it is called cuffitis. I don’t know why I got so lucky but I have cuffitis. It just means that my Pouch and the end of my rectum are inflamed at times. All the same reason to stay on the Flagyl.

These small setbacks of the j-pouch should not discourage you. Doctors are well aware of pouchitis and cuffitis. Just watch out for these symptoms if you have a j-pouch. And hey, you might not even have to worry about every getting it! Carry on!

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