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Sunanda Kane, MD: Hello. I'm Dr Sunanda Kane. Welcome to Medscape's InDiscussion series on ulcerative colitis. Today we'll be discussing patient care and pouch management with our guest, Dr Laura Raffals. Dr Raffals is professor of medicine in gastroenterology and hepatology at Mayo Clinic in Rochester, Minnesota. She has a clinical interest as well as research funding in the area of pouch disorders, and she also happens to be the vice chair of our division — the first woman to ever hold that position. Hi, Laura. Thanks for coming.
Laura E. Raffals, MD: Hi, Susie. Thank you so much for having me here today.
Kane: What was the complaint from a patient with a J pouch that made you so interested in specializing in this area?
Raffals: It actually wasn't one patient. There's sort of an interesting story. You and I were both trained by the same folks, and I remember how Steve Hanauer always taught us to be sort of very good observers of the patterns we see in our patients. One of the very first research projects I had as a junior faculty member was studying the microbiome and the evolution of the microbiome in patients with newly formed J pouches. In this study, I was scoping patients 10 times over the course of 18 months after they had their pouch. We scoped over 20 patients, so I got to know these patients incredibly well and I got to know their pouches incredibly well. What was interesting is these were unprepped pouchoscopies because we're studying the microbiome. I would ask patients to go have a bowel movement before I would scope them. In some patients, I would scope them, their pouch would look pristine, and it was always that way for those folks. Then there were other patients who, after they had their bowel movement, I would scope them and there was still a ton of stool in the pouch. Stool was stuck to the wall of the pouch. I could never get a good view of the pouch mucosa. Under that stool there would be a little bit of inflammation, and those are always the folks that would get pouchitis. I started this game with the research coordinator. I would predict who is going to get pouchitis, and it was all just based on stool. So when I moved, Gene Chang, who was my research mentor, and I would talk about this a lot. You always heard fecal stasis was a risk factor. But I said, no, it's all about if the patient can poop or not.
Raffals: When I moved to Mayo Clinic, one of the first phone calls I made was to Michael Camilleri because I knew he was a motility expert, and I told him about this observation. That's where we developed a research program. I also think because I scoped so many patients with pouches and thought about the physiology of pouchitis, it naturally evolved into a clinical interest of mine. I didn't really set out thinking I was going to be a pouch expert, but it evolved based on seeing a lot of pouches and thinking about the physiology behind pouchitis.
Kane: That's a pretty cool story about the patients who can poop and don't really need a prep vs those that do. At the clinic, we get referred a lot of patients, or the patients will call, and they'll say, "I have a flare of my pouchitis." What is it that we should be asking or looking for before we just knee jerk give them antibiotics? Or should we? Is that the treatment algorithm?
Raffals: I do believe that if a patient has symptoms of pouchitis, they probably need treatment, and we know they're going to respond well to antibiotics. Are we treating bacterial overgrowth, are we treating the mucosal inflammation, or is by treating the bacterial overgrowth is that allowing the mucosa — who knows? We don't know. But I do find it interesting to ask patients, "Did something precipitate this? Did you go on a long trip? Were you going through finals where you were sitting in a classroom for long periods of time, unable to go empty your pouch when you felt the urge? Was there something different at work that didn't allow you to empty your pouch regularly?" Not always, but sometimes patients say, "Oh, you know what? Yeah, I was not emptying my pouch as regularly as I usually do because of X, Y, or Z maybe that precipitated this episode." I can't say that every time I get that story, but I find it interesting enough that there are times when I do pick up that story and that also I think helps patients recognize how important it is that they try to make it a priority to empty their pouch regularly. I do ask those questions of my patients who just have occasional episodes of pouchitis.
Kane: When do you start thinking that perhaps they have chronic pouchitis or even maybe this is Crohn's of the pouch? Because there's so much overlap with what we might see or what the patient complains about. It's clearly going to be a big deal to change their diagnosis from ulcerative colitis to Crohn's. Let's talk a little bit about that for our listeners. What are some of the key things that we should be thinking about?
Raffals: Well, I'll sort of walk through my algorithm of how I approach these patients. You have just acute pouchitis — those folks who have an occasional episode of pouchitis, and those are pretty easy. But then when you get a patient who, every time, they have recurrent pouchitis and every time they come off their antibiotics, their symptoms come back or they're just having more than four episodes a year, those are the folks that are the frequent fliers. You need to start thinking: Is there something else going on here? Why is this patient dependent on antibiotics? This is where I start asking questions about pouch evacuation to see if there could be a pouch evacuation disorder or an ileoanal anastomotic stricture that could be making it harder to empty the pouch. I start thinking about those causes. This is where our diagnostic tools are so critical. You obviously need to scope these patients and get a look at the pattern of inflammation. I think that patterns of inflammation can be very helpful. If it's just diffuse inflammation limited to the pouch, then this is likely chronic antibiotic-dependent pouchitis. Be sure there's not an evacuation issue. But if the patient has a different pattern like deep ulcerations, pre-pouch ileitis, strictures that involve something beyond an anastomosis, then you have to start thinking whether something else is going on. Certainly, patients with primary sclerosing cholangitis (PSC) are very likely to have pre-pouch ileitis as well as pouchitis.
Kane: Okay. So, is that Crohn's?
Kane: No? Okay.
Raffals: I think that's PSC. I don't label those. Kevin Quinn, one of our prior trainees who's done a lot of the research with me, and I described it, as have others, as the PSC pouch phenotype. Eighty percent of PSC patients are going to have chronic inflammation of the pouch. It tends to be a little bit harder to treat than patients without PSC, and the phenotype of inflammation is they have pre-pouch ileitis. I don't think it's really Crohn's. Similar to when we see the UC patient with PSC with backwash ileitis, I think it's a similar phenomenon. They're a tough crew to treat sometimes, but we're anecdotally collecting these cases and we have been trying vancomycin in these patients with some success. That may be something that we'll be recommending down the road. Then you get into those folks who are not responding to antibiotics or maybe they have pre-pouch ileitis but don't have PSC or have strictures or have fistulas. You have to start entertaining the thought, does this patient have Crohn's disease?
Raffals: Which is very challenging because emotionally we just told this patient at the time of their colectomy that we were going to cure them of their ulcerative colitis. And now we're throwing around Crohn's disease as a diagnosis. I think we have to be very cautious.
Kane: When you talk about fistulas, it's so important to have that discussion with the surgeon because this could be a post-surgical fistula and not Crohn's.
Raffals: Because we're a tertiary care center, we'll often see these folks who come in with the label of Crohn's disease of the pouch, and they've been on multiple biologics, none of which are helping. You go back and you look at the imaging and you see that where the issue is, the fistula is coming from an anastomosis and they have presacral abscess or, sacral inflammation from chronic sepsis down that presacral space. Whenever you see fluid collection in that presacral space and an anastomotic leak, or an anastomotic fistula, you always have to be thinking about a leak. Even if you're five years out from surgery, my guess is that if you could go back in time, and you could look back with imaging, you might see like a tiny sinus tract or somewhat chronic small leak. I think you have to be clued into the location.
Kane: You can ask the patient how they did between stages. Do they say, "Oh, I was perfect and I had no problems"? Or there's the patient who was like, "Yeah, you know what? I sort of always felt bad." And the surgeon will describe a really tight anastomosis or that there was fluid or that there were complications, and it wasn't just a smooth one, two, three.
Raffals: You're right. Then there are the folks who feel great until they have the takedown of their loop ileostomy. I had one of these patients recently where they actually didn't do well; they had a leak after the second stage. They never did well after their takedown, but they were diagnosed with Crohn's of the pouch. This was all just chronic leak, the same leak that they had after stage two. Our surgeons are taking that patient back to the operating room to see if we can revise the pouch. That patient had been on multiple biologics, of course, following the pouch. We always will have medically refractory patients, but I think we have to at least consider if this could have been a surgical issue.
Kane: They talk about having a pouch done at a high-volume center. I think that the definition still is 50 per year, right? That's one a week. And we do 500 here at Mayo. Is it a good question to ask your surgeon — how many have you done? Because you want them to be able to identify when there is a problem in between these stages right?
Raffals: You do need it. Not all colorectal surgeons focus on inflammatory bowel disease (IBD).
Raffals: They may not be doing pouches. And so it's true — you want a colorectal surgeon who has done a lot of J pouches and is very comfortable with the J-pouch procedure because this is an investment. This is an investment in the quality of your life, for the duration of your life. You want it to be a really solid pouch. I think it's very fair to ask that question. You want not just a great colorectal surgeon, but one who specifically is interested in IBD and is willing to be sure that the J pouch is the right thing and has experience doing it.
Kane: There have been recent papers saying that the quality of life in patients with pouches is not as good as those who still have their colon and might actually have some active disease. I don't know how you feel about what potential biases there were in there. I know I've had patients come and quote me that study because, of course, it goes online and they read, and I just am not sure why suddenly there are these people who are trying to send this anti-pouch message.
Raffals: I think there are a couple of things to consider here. Often a patient who has been really sick, who gets a colectomy with the pouch — about 9 times out of 10, they tell me they wish they'd done it sooner.
Kane: Exactly. That's what mine say.
Raffals: What's different now than, say, 10 years ago is that we have so many more drugs in our toolbox that we can use. This issue came up at a recent congress. We are exposing these patients to multiple therapies that impact the immune system in different ways. Our patients who have been on multiple therapies, as opposed to one or two biologics and then a pouch, may not do as well. Some of that is because at the time of surgery, they've been on four biologics, five biologics and a small molecule, and they've been on steroids off and on for 4 years. We can keep kicking the can down the road because we have so many options.
Raffals: That patient is not as ideal of a surgical candidate compared to the patient who didn't respond to Remicade [infliximab] and had a pouch. They're very different patient populations. Those surgeries don't go as smoothly and then I'm not even sure what we've done to the immune system after all of these therapies. I don't have the answer here, but I'm just throwing it out there. I'm curious as to what you think. It does feel like we see more of the chronic antibiotic refractory pouchitis or Crohn's of the pouch than we used to. Is there something about exposing our patients to so many treatments prior to sort of moving to surgery that we've somehow hypersensitized those folks down the road?
Kane: I think you're right about that because the patient will throw it back and say their quality of life is not as good with the pouch. So you have to have that conversation about potentially thinking about surgery earlier in your colitis career, when you are a healthier candidate for it, rather than kicking the can and then saying, okay, fine, I've tried every single thing and my colon is not responding. Fine. I'll have you take it out.
Raffals: There's nothing more heartbreaking than when you have that patient who's been terrified of surgery and has been on high doses of steroids, and then they have that leak and they have the complication. I think we can do a better job communicating to our patients that if we can intervene earlier, sometimes surgery really is a great opportunity. It's a question of, how do you predict those folks that are not going to respond to anything, and you need to just get them to surgery before they get too sick? That is what we have to figure out. How do we identify that group of patients, because we're not doing them a service by letting them get malnourished and at risk for anemia and all these complications.
Kane: When do you give up on a pouch? We have surgeons who can revise a pouch. They can redo a pouch. When is it time to say, "You need an end ileostomy and you need your health back"?
Raffals: I think it depends on the patient and their quality of life. These cases are so hard, because our patients are terrified of a life with a permanent ileostomy; that's not what they signed up for when they decided to have the J pouch. I will fight for a pouch. We have great surgeons, so we're lucky here. We have that backup, so I'll fight for a pouch and try medications. I'll try different endoscopy procedures. We'll try pouch revision if the surgeon feels it's appropriate — however, not at the expense of somebody's long-term health. If I feel that by trying all these measures to save a pouch is in some way impacting somebody's overall health, that's where you have to take the time to understand what that patient's so fearful of and try to help get them to a point where they can emotionally and intellectually understand why it's time to remove the pouch. I try hard to fight to save the pouches when I can, but there are definitely circumstances where it really isn't in the patient's best interest for their health long term.
Kane: We have a few minutes. I wanted to get to pelvic floor dysfunction, the bugaboo of when the patients say they have pouchitis. There's really not that much endoscopically going on, but they're miserable. Are you able to do anorectal manometry? Is it appropriate when you've got a pouch anatomy to make that kind of diagnosis? We're lucky here; we have Michael Camilleri and you guys have done some really elegant work. Is that something that can be done in the community to make that diagnosis?
Raffals: It could be challenging. If you have a really good team you can certainly do it, but I would say we don't really know exactly how to interpret the anorectal manometry in and of itself. Again, there's another study, that Kevin Quinn and I did, on what we consider normal, with a healthy colon or rectum. We looked at a small group of patients who reported themselves as having normal pouch function and we screened them radiologically, etc., to be sure they had normal pouches. I think what's interesting is that of the normal people that we could see all the way through the study because they were truly normal, the parameters were not the same as what we see in a healthy rectum. So, we had to be careful in terms of how we interpret normal on an anorectal manometry. I think you have to put the whole picture together: the clinical history, asking the right questions about evacuation, looking at the overall theme of the anorectal manometry, and putting that in the context of the history. Then I use our physical therapists to eventually confirm a diagnosis. Sometimes I'll do a defecography — MR defecography, which is not widely available; or even a simple barium defecography can give you some sense about the defecation or evacuation. It's definitely worth exploring, but you can't just rely on one modality such as anorectal manometry.
Kane: To wrap up in these last few seconds here, what's your current recommendation about pregnancy in a pouch?
Raffals: You can do it. You can get pregnant. You may have a little bit of fecal incontinence as that baby starts pushing on your pouch.
Kane: Okay, but it's worth it in the end. The old literature said that if you had a pouch, you were going to be infertile or significantly at risk for infertility. Do those data still hold up?
Raffals: Now that they're doing this laparoscopically, I think we're seeing fewer issues with infertility. I remind patients that it's a plumbing issue. We can get around that plumbing issue with our great maternal-fetal and infertility doctors.
Kane: Exactly. Great. Can you believe it's been 20 minutes?
Raffals: No. It flew.
Kane: We've talked a lot about pouches in terms of pouch function, what tests we have to try to get at the right diagnosis. And then you taught me something! I feel like I'm a relative expert, but this pre-pouch ileitis in a patient with PSC is a different phenotype, so don't necessarily call it Crohn's. I think that's a great takeaway pearl. Thank you so much for joining us today. This is Dr Sunanda Kane for InDiscussion.
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Cite this: J-Pouch Care: Disorders and Complications - Medscape - Jun 20, 2023.