IBD Drive Time: Laura Raffals, MD, on Complications of the J-Pouch

Dr Raffals discusses managing the J-pouch and possible complications among patients with hosts Raymond Cross, MD, and Millie Long, MD.

Laura Raffals, MD, is vice chair of gastroenterology and hepatology at the Mayo Clinic in Rochester, Minnesota.

Dr Millie Long:  Hello and welcome to "IBD Drive Time." This is Millie Long from University of North Carolina and I'm here with my cohost Ray Cross from University of Maryland. We have the pleasure of introducing our guest today who is Laura Raffals from Mayo Clinic in Rochester who's a real expert on the J-pouch.

This is an area where I think many of us have a lot of questions. We have difficult patients that we want to treat appropriately. This is a wonderful time to help us to shore up our knowledge on the pouch front. Welcome, Laura. We're so thrilled to have you.

Dr. Raffals:  Thank you for having me. It's great to be here today. I've enjoyed this podcast so it's fun to be on this side of it.

Dr Long:  Great. Just watch out. We have some great questions around on the pouch, but we certainly want to try to get to know you a little bit more for our listeners as well during these 20 minutes. Let me start with a general question which is...I even struggle with this sometimes myself.

In terms of the definition surrounding the pouch. Obviously, once a J-pouch is made, there can be a lot of things that can go wrong whether that be acute pouchitis or chronic pouchitis. Would you talk us through what some of the definitions are surrounding the J-pouch?

Dr. Raffals:  Absolutely. To be honest, if you just sit back and think logically about what's happening with the pouch, you can usually work your way through these definitions. The most common type of pouchitis we see is acute idiopathic pouchitis and this is pouchitis where somebody is experiencing symptoms suggest of a pouchitis where those symptoms are lasting less than four weeks.

If you get beyond those 4 weeks, that's where you get into chronic pouchitis. That's a different ballgame. Even as you get into the chronic pouchitis, can get a bit more complicated, because then you have several different categories that you're looking at. This is where your history and understanding what's going on with a pouch will help you walk through.

There's antibiotic-responsive chronic pouchitis. There's antibiotic-dependent pouchitis, chronic pouchitis. Those are the folks that respond to antibiotics but you can never get them off the antibiotics, which is a little bit different than the general chronic. You can have chronic‑dependent and then chronic antibiotic-refractory pouchitis as well.

Those are the folks who try antibiotics. They don't do a whole lot to get their symptoms and inflammation under control. That's where in that group of patients, you need to try to understand, why aren't they responding to antibiotics?

That's where you start to think about, do they have Crohn's-like disease of the pouch? Do they have something else affecting the pouch that is either triggering inflammation in the pouch, like pelvic sepsis, or perhaps they just simply have...Whether it's related to poor evacuation or emptying of the pouch, fecal stasis that leads to this chronic low inflammatory state in the pouch.

Trying to understand, in that chronic antibiotic refractory group that doesn't have Crohn's‑like disease of the pouch, is always trying to understand a little bit deeper there, is something else triggering that inflammation that's requiring them to start exploring treatment options outside of antibiotics?

Dr Long:  I know you've done a lot of work in this arena, in terms of the evacuation difficulties that some patients with pouches have. You've done some work even looking at anorectal manometry. Could you tell us a little bit about that? When should we be thinking about this with our patients?

Dr. Raffals:  Of course. I'm actually going to tell a little story about why I even got interested in this. I think it helps people understand why this is important and how this all works. When I just finished my training, I was working with Gene Chang at the University of Chicago. We were doing a study looking at the microbiome in pouches.

This was a longitudinal study in patient's right after colectomy, where we scoped them 10 times over the course of about 18 months. I did all the scopes pretty much myself unless I was out of town for some reason.

I got to know these patients well. I was just doing their pouchoscopies and getting to see patients longitudinally over time and what would happen with their pouches. This is a microbiome study, we did these pouchoscopies unprepped. Before their pouchoscopy, I'd ask them to go have a bowel movement before I did their scope.

What was interesting is I started to get to the point where I could predict who was going to get pouchitis. It was basically the folks who when I went into go scope them after they had their bowel movement, had a bunch of stool in their pouches.

I'd wash away the stool off the pouch wall at the end of the procedure to get a good assessment of their pouch mucosa. Those folks always had just this little bit of friability, granularity even early on compared to the folks who had a clean pouch right from the get‑go.

I was like, "What's going on?" There's something going on here in these folks who can't empty their pouch. It just seemed like clockwork. They were the ones who were getting pouchitis, and even the chronic pouchitis.

That's when I moved to Mayo Clinic, was after I'd done quite a few of these patients. I met with Michael Camilleri, who as you all know, is the motility expert, and talked to him about this observation. That's where we basically developed some studies to look at pouch evacuation and its role in inflammation.

If I have a patient who has recurrent pouchitis or who has chronic, either antibiotic dependent or refractory pouchitis, any of those, I always ask questions about their pouch evacuation habits, and try to get a sense if there's a problem there. That can be certainly an area where you can go in and make a difference for these folks.

Sometimes it's as simple as they have an anastomotic structure and they just need to be dilated. You need to be on top of that so they can empty that pouch. Sometimes our patients, due to pelvic floor issues, have a hard time emptying the pouch.

You have to remember, a pouch is not the same as a colon. It could be floppy. The longer you go without emptying it, the floppier it gets. You don't have that same propulsive force to evacuate stool from the pouch.

There are other pieces to it that are interesting, too. I always say if you have a patient who's lived with ulcerative colitis for a long time or they had terrible flares before their colectomy, what are those patients doing all the time when they have that colon attack? They're squeezing their anus because they don't want to have incontinence.

The anal sphincter is a muscle. It gets stronger. They forget how to relax it. That can also lead to some pouch evacuation issues later. You have to retrain these folks in terms of how to relax that muscle so they can empty their pouch.

Dr Long:  Biofeedback can help in that scenario. Is that right?

Dr. Raffals:  It can. The data are a little bit tricky. We've looked at this retrospectively, not prospectively. For full disclosure, our pelvic floor training program is not typical of what you see across the country. We have a 2-week program where our patients are working with a biofeedback therapist in morning and afternoon for the 2 weeks straight. It's pretty intensive training.

What we did find is our patients who underwent pelvic floor retraining had significant improvement, and actually, fewer episodes of pouchitis. I think if you have intensive training with a therapist who understands basically what a pouch is and understands what these patients are going through, that there is a good opportunity to help retrain folks how to evacuate correctly.

It's a behavior. We're trying to change a behavior to help empty that pouch the best you can.

Dr Long:  No, that's really helpful. I think we all need to put that in our differential when we see these patients with this either refractory or antibiotic-dependent pouchitis.

Dr. Raffals:  I do want to make one more point, Millie, that may be important. I do know folks are doing a lot better job of getting anorectal manometries in these patients. The reality is we don't know what's normal for our patient.

We're always using the colon as our normal definition. That doesn't make sense. We have a paper that's going to be published here shortly, where we took pouch patients and we looked at patients who had normal pouches. We looked at their manometry and did MR defecography.

What we found is it's not the same in the pouch as it is in the colon. There are some differences, particularly our pouch patients can't expel a balloon as well as somebody with a colon. Which makes sense because you've got the anastomosis, which doesn't give.

We've often used that balloon expulsion tests as a marker of evacuation issues. That doesn't hold much weight when it comes to a patient with a pouch. You have to look at the actual manometry readings and put together the story based on what you're seeing with those manometry readings.

Dr Long:  That's a great tip. I'm definitely going to look for your paper as we...We need to tweak those reads for sure in our pouch patients. I want to ask you one last question before I turn it over to Ray, who's going to get into some of your treatment recommendations.

My question has to do with the endoscopy that we do of the pouch. If you don't mind, just making sure that our listeners are aware, how should we be doing those endoscopic exams? What should we be looking at?

Dr. Raffals:  This is key. There are certain areas of the pouch it's important to comment on, again, in a patient who's symptomatic particularly. When you go into the pouch, you want to get a good look...I usually go straight up to the prepouch ileum right at the get-go at the beginning of my exam.

You want to be sure you're going more than 5, 10 centimeters above the pouch inlet. It's key to try to get up as proximal as you can to look at that prepouch ileum to look for inflammation. If you see inflammation more than 10 centimeters above that pouch, it's certainly much more significant as somebody who has 2 to 3 centimeters of prepouch inflammation.

You want to look at the pouch inlet and get photo documentation there. If you have issues specifically at that pouch and inlet, you start thinking about Crohn's-like disease of the pouch. You want to look at your staple line. You want to specifically look at the tip of the J. That's a common place where patients can get ischemia and even have a leak. It can go on for years before it gets recognized. You want to photo document the tip of the J. That's a really important part of the exam. I also, of course, like to get a good view of the pouch body itself, and in my report, like to comment on the capacity of that pouch.

It's important. If it's a small‑capacity pouch, that's important. The patient's probably going to have a little bit less good function or quality of life from that. Also importantly, if you have a big pouch, that probably tells you that that patient's not emptying their pouch. That big, floppy pouch can be a problem, too.

You can also, obviously, look at the cuff and the ileoanal anastomosis. That's key. One other point I want to bring up is sometimes you can pick up an afferent limb syndrome or even some twisting of the pouch on your exam.

If you notice the tip of the J is not on the left side as it typically is as you enter the pouch — when you're in the pouch body looking at the pouch inlet and the tip of the J, you want to see that owl eye appearance. That's distorted — either the patient has had chronic inflammation of that pouch, which is a problem, may have twisting of the pouch, which can be a problem.

Certainly, if you have that swirling of the prepouch ileum at the pouch inlet and you can't get up there, they may have a kink or twist at the afferent limb, which can cause problems, too. There are a lot of clues you can get from doing this exam right and photodocumenting all those aspects of the pouch.

Dr Long:  No, that's great. That's helpful. I plan on using that in my next endoscopy day. I want to take a brief break and thank our sponsor of this podcast, the Gastroenterology Learning Network.

I also want to make sure all of our listeners are aware that on April 2nd, Ray and I would love you to join us in-person in Raleigh, North Carolina for our first in‑person AIBD regional in the past couple of years.

We're excited to get back in person. Now, let me introduce Ray, who's going to take over with a few more questions for Laura.

Dr Cross:  Great. Thanks, Millie. Laura, it's a real testament to someone when you give a lecture and it changes people's practice. When you visited University of Maryland and did our IBD grant rounds, you definitely changed how I think about a pouch as far as evacuation disorder. Kudos to you. It was a good talk, it changed how I practice.

Let's think about before pouchitis. Patients ask us all the time, "What should I eat after the pouch is formed and the ileostomy's reversed." Maybe speak a little bit about probiotics. Do they make any difference at all in preventing pouchitis?

Dr. Raffals:  First thing, it's important as a gastroenterologist or a provider taking care of these patients, before surgery, you have to set expectations for that patient of what they can expect with their pouch function.

Sometimes patients go into surgery thinking after colostomy, they're going to be back to normal feeling just like they did before they had IBD. That's not realistic. They're going to feel well. They're going to have control over their bowel movements, but they're going to have more bowel movements than what somebody would have with a normal pouch.

Actually, those first 6 months of living with a pouch, there's a period of the pouch adapting to stool being in it, to be quite honest. Patients need to realize early on their pouch function may not be as good as it's going to get and helping them through that.

I find it's good to help patients early on with their pouch be aware of what tools they can rely on to thicken their stool so they have better control. The typical foods that will thicken your stool, looking to serve oatmeal, applesauce, starchy foods, bananas. Those things can help.

I do encourage my patients to use fiber slurries. This doesn't work with everybody. Some folks have a hard time with this. In some patients, it can be helpful. That's where they take psyllium husk. Mix it either with yogurt or just a little bit of water. Take it 30 minutes or so before a meal to thicken up the consistency of their stool, which can be helpful.

Using loperamide can be helpful too. With my pouch patients, I use it similarly to how I use it in ostomy patients. Have them crush it and mix it with applesauce. That can be helpful.

I also think our patients oftentimes think about they have a pouch, they're drinking. Taking the history on what your patients are drinking sometimes could be helpful. You find they're doing these smoothies that have a ton of fruit and sugar in them or they're drinking straight‑up Gatorade, which has a high sugar load. They're going to have a lot of urgency and frequency.

Even just thinking about what they're using to hydrate sometimes or just drinking, in general, can be very informative in optimizing their pouch function. There's a cool study that came out a year or two ago with the Israeli group, where they looked at their patients who had followed a Mediterranean diet. This is very interesting.

They found that in their practice, folks who were compliant with a Mediterranean diet had lower levels of fecal calprotectin compared to those who weren't following a Mediterranean diet. Over time, those who followed a Mediterranean diet long term, they had follow up...I can't remember the exact number of times, 5 or 8 years, they had fewer episodes of pouchitis.

That's interesting. It gets back to this concept of eating a healthy diet without all of the processed foods may be beneficial. It's tricky in the pouch. Some of these fermentable fibers as we know that we find in our fruits and vegetables can sometimes increase your bowel frequency. There's a delicate balance there.

There's a lot of personalizing the diet with patients. I'm very interested in that study by the Israelis looking at the Mediterranean diet. There's way more to come there in the future. In terms of probiotics, there are some studies that suggest probiotics may be good prophylactic strategies, but the data inconsistent.

In my own practice, I've not seen any dramatic results. I don't care if patients take them. I certainly don't prescribe them per se. Patients who want to take probiotics, I'm fully supportive. I don't make it a habit to prescribe them in my own practice.

Dr Cross:  I'm glad that it's not just Millie and I that are failing.

I thought it was just our patients that weren't responding to a probiotic. One other little trick for loose stools is our dietitian loves big marshmallows, apparently act as a sponge when you're having a lot of liquid stools. Apparently, it's only the big marshmallows, not the little marshmallows.

Dr. Raffals:  I did not know that. You're teaching me something now.

Dr Long:  We use for high ostomy output too. We have them put the big marshmallows in their travel bag.

Dr. Raffals:  I love that.

Dr Cross:  They're tasty so they're good.

Dr. Raffals:  I would be in trouble. I can't stop when I start on those. [laughs]

Dr Cross:  I think that most of our listeners are pretty comfortable treating a simple episode of acute pouchitis. Most people are going to use ciprofloxacin or metronidazole typically for two weeks. The question that always comes to mind is, which patient if any, should have an extended course or a combination of antibiotics?

When you're thinking about antibiotic-refractory pouchitis, do you just have to fail one antibiotic? Do you have to fail 2 or 3? I don't think we know that for sure. What's your thoughts and approach to that?

Dr. Raffals:  I would say this is one area in my practice where I'm starting to change how I treat these patients. I used to rotate antibiotics. I would have regimens where I taper down to the lowest dose I can but rotate in 3 or 4 antibiotics for these folks.

I'm concerned about antibiotic resistance. A lot of these patients are young. I'm not so sure we're doing our patients a great favor giving them decades' worth of antibiotic therapy not knowing what type of antibiotic resistance we're creating for these folks.

Especially now that we have more effective treatments that we can fall back on — that, to be quite honest, have pretty good safety profiles — that seem a lot more reasonable to me than developing a treatment that may cause antibiotic resistance.

In somebody who is on chronic antibiotic regimens, I start the conversations about introducing a biologic. Vedolizumab is a great example of one that's shown both in case series, as well as more recently, in a randomized controlled trial to be effective in treating patients with chronic pouchitis.

There's an opportunity to fall back on some of our biologic therapies in this group of patients and not rely on antibiotics for decades of time. I approach it very similarly in patients who have antibiotic‑refractory pouchitis. Those folks, I am very quick to move on to a biologic treatment for them, or a small molecule, if that's appropriate. I look at what treatments they were on precolectomy.

Based on that, what they've already been exposed to. I look to see what I still have available to me to use moving forward. From there, we'll choose what I think is the most appropriate biologic therapy. I'm pretty quick now to move towards a biologic if it feels appropriate.

This pouch is an investment for this patient. They've put a lot into getting this pouch. Allowing a patient to live with chronic inflammation of the pouch for years is not really doing them any service. Over time, that chronic inflammation causes the pouch to be less distensible. Their pouch function over time can start to decrease.

It's important to be aggressive, just like we are in IBD patients who haven't had a colectomy regressive now to try to get mucosal healing. We need to have the same level of aggressiveness and shooting for mucosal healing in these pouch patients. Antibiotics often just doesn't cut it.

Dr Cross:  It makes sense with what you're saying. If you're thinking about transitioning to highly effective therapy, like a biologic, if someone's antibiotic-dependent, for you, it really doesn't matter if it's 1, 2, or 3 antibiotics. You're already thinking in your mind that may be something you're going to do.

You mentioned the randomized controlled trial that was presented at ECCO with vedolizumab, which was impressive. Two‑part question, which are really terrible. I apologize. I'm going to give you a 2‑part question.

Should vedolizumab be our biologic of choice for antibiotic‑refractory or antibiotic‑dependent pouchitis? In follow‑up to that, does prior treatment for their colitis, does that influence how their pouchitis is going to respond?

Dr. Raffals:  Those are great questions. I would be very cautious about saying that vedolizumab should be our go‑to. You have to look at each patient's history and what they've been on prior to colectomy. For example, if I have a patient who never responded to vedolizumab precolectomy, and they never tried an anti-TNF, I might want to just try an anti-TNF.

Now, if they've been through everything, I'm going to try the vedolizumab. It's a safe drug. The results in both retrospective studies as well as this recently prospective study, results look good in terms of the response.

I don't know that the results, if we look at our anti-TNF data in pouches, it's also pretty darn good as well. I think I always look at what patients have been on in the past and personalize my approach.

Raymond:  This is the fun question, Laura. Tell us something about yourself that the listeners may not know. Something maybe I don't even know.

Dr. Raffals: Well, this is always tough. I would say probably what people may not know is I used to be...I love the mountains. I fell in love with the mountains back when I was...Before med school, I was working as a housekeeper at the YMCA of the Rockies.

Actually, still, go out there every year to hike and have had some pretty crazy stories out there with some of my hiking misadventures.

Dr Cross:  Housekeeper at the YMCA. I would not have expected that. It doesn't beat Ben Click's story about being a skate rat with green hair, but it's a close second.

Laura, that was wonderful. Thanks so much for joining us today and we hope you'll join us again in the future.

Dr. Raffals:  Thanks for having me. It's been great fun.