Ulcerative colitis surgery is sometimes viewed as the last stop for treatment but it can be a good option to treat inflammatory bowel disease (IBD). Dr. Vikram Reddy, Division Chief of Yale Medicine, Colon and Rectal Surgery, answers questions about j-pouch surgery including how patients feel about it, how he manages his patients after surgery, what complications might occur, and why surgery for ulcerative colitis is complicated and nuanced.
Concepts discussed on this episode include:
- Yale New Haven Health Digestive Health Service
- What’s It Like To Have A J-Pouch?
- Do You Need A Colorectal Surgeon or Gastroenterologist?
- Overview of J-Pouch Surgery
- Ulcerative Colitis Surgery
Find Vikram B. Reddy, MD, PhD at Yale Colon and Rectal Surgery.
Find Yale New Haven Hospital at Twitter, Instagram, and Facebook, and Yale New Haven Hospital.
Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.
Credits: Mix and sound design is by Mac Cooney. Theme music, “IBD Dance Party,” is from ©Cooney Studio.
Transcript
Amber Tresca 0:00
Real quick before we get started: don’t forget to check the show notes for more information and a transcript. Plus, if you enjoy this or other episodes, please do me a favor and leave a rating or review in your podcast app.
[Music: IBD Dance Party]
Amber Tresca 0:17
I’m Amber Tresca and this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.
Welcome to Episode 103!
Surgery for ulcerative colitis is sometimes thought of as a last resort but it is a viable treatment option that can give patients back their quality of life. For the 10 to 15% of people who go on to have surgery to treat ulcerative colitis, a colectomy with j-pouch creation is one option.1
The technical name is ileal pouch-anal anastomosis, or IPAA. It’s commonly called a j-pouch because the reservoir for holding stool that’s created during the operation is usually in the shape of a “j.”
Before making a decision about surgery, however, it’s good to understand as much possible about all the factors involved. Talking to other patients and getting their experiences is a great idea. Asking questions of a surgeon who cares for lots of people with j-pouches is also helpful.
That’s why I asked Dr. Vikram Reddy, Division Chief of Yale Medicine, Colon and Rectal Surgery, to discuss j-pouches with me, including why patients have the surgery, what the common complications are, and what life looks like after recovery.
Amber Tresca 1:36
Dr. Reddy, thank you so much for coming on About IBD to talk to me about j-pouches.
Vikram B. Reddy, MD, PhD 1:41
Thank you for having me.
Amber Tresca 1:43
It is a topic that’s close to my heart because I live with a j pouch. And I feel like I spend a lot of my time talking about j pouches to other healthcare professionals and then also to patients and trying to help them if this is a journey that they’re going to embark upon, or once they have their j pouch trying to connect them with resources and get their questions answered, because it’s not a common thing. And they run into issues and sometimes they don’t know how to solve them themselves. So I’m glad to be opening up this discussion with you. First, for a level set, I wonder if you would tell us what a j pouch actually is.
Vikram B. Reddy, MD, PhD 2:21
So a j pouch is an artificial reservoir like a rectum. So for most patients, you know for most people, you have the colon and then you have the rectum. Colon absorbs water, the rectum kind of store stools so that we can empty our rectum maybe once a day or twice a day. So for patients with ulcerative colitis when we take out the whole colon and rectum, now we have to create an artificial reservoir where they can hang on to their stool so that they’re not emptying it constantly. So the J pouch is an artificial reservoir that we create with the small intestine and we hook it down to the anus. And usually with that, you know, patients are able to empty maybe about five, six times a day.
Amber Tresca 3:02
And j pouch is a very specialized surgery it’s done for very particular reasons. What are some of the reasons that someone might have a j pouch surgery.
Vikram B. Reddy, MD, PhD 3:11
So nowadays, the most common reason to have a j pouch surgery is ulcerative colitis. The second reason that we also do j pouch is for is for patients who have polyposis. So any kind of condition where they have polyps throughout their entire colon and rectum. Now some of these polyps can be cancer, they can also be benign, and we do it prophylactically the most common condition polyposis condition is a FAP. So it’s usually for ulcerative colitis.
Amber Tresca 3:38
So someone decides to have the surgery. I mean, it can be emergency or it can be something that’s planned, I think, depending on why you’re having it and your general overall health. But what do people usually go through in terms of follow up care and I recognize that that might be a huge spectrum depending on so many different factors that you’re going into the surgery, but what might be typical.
Vikram B. Reddy, MD, PhD 4:01
So after you have the surgery, I usually tend to follow the patients at least initially every couple of months because it’s a complete lifestyle change. They’re going from you know, if you’re having it for emergency reasons, let’s say you’re having ulcerative colitis battles replies and you’re 10, 15, 20 times and then you’re transitioning to a j pouch patients are actually very happy.
Vikram B. Reddy, MD, PhD 4:22
But let’s say you had ulcerativie colitis for a long time and the reason you’re going for a j pouch is you get this thing called dysplasia, which is a precancerous lesion. Now some of those patients, they’re only going once a day, even though they have ulcerative colitis, but the reason they’re having the surgery and having their entire colon removed is because they have dysplasia. For those patients, all of a sudden, they’re going from one bowel movement a day to five times a day. And that’s a huge drastic change.
Vikram B. Reddy, MD, PhD 4:46
So what I explained to patients is that having the j-pouch is sort of a life altering, or a life changing situation that no one understands it better than the patient who’s going through it. And sometimes just to walk through the process with them you know I tend to see them periodically even even you know every two months because they will notice little changes, little symptoms. And that’s the initial for the first year we sort of do that but after about a year the patients know like much better than we do.
Vikram B. Reddy, MD, PhD 5:17
They know what kind of diet they can eat though avoid complications, they know you know how to identify things, such as pouchitis, which is an inflammation in your pouch that people commonly get. They also know when you get blockages what foods trigger blockages, and later on, we actually follow them mainly to look at their pouch, make sure they don’t develop anything like Crohn’s disease, which is another inflammatory condition, or in patients who have dysplasia to make sure that they don’t get any dysplasia, which is another precancerous lesion that can form in any of the residual rectum that’s left. And lastly, for patients with FAP who have j-pouches, we also look inside their pouch to make sure they don’t develop polyps. And so those are the most common reasons we follow them.
Amber Tresca 6:03
How common is it though, to develop dysplasia or full on cancer or polyps in a pouch after and I’m talking about people with ulcerative colitis, not people with FAP, how common would it be to develop that after having the surgery.
Vikram B. Reddy, MD, PhD 6:18
So for developing dysplasia, and cancer, it’s actually low A long time ago, not even so long ago, even now, if you have ulcerative colitis for more than 10 years, your risk of cancer in your colon and rectum, if you still have your colon rectum, keeps going up.
Vikram B. Reddy, MD, PhD 6:34
Now when we do the surgery, you know, a long time ago, what they used to do was they would strip the bottom area of the rectum and not take it out and it’s called the mucosectomy, they would bring the pouch down and attach it back to the anus. They were doing that in the hopes that that bottom half where they strip that area, the risk of cancer went down to zero. But what they realized is some of the glands actually go between the muscle cells. But one downside of that operation is that patients tended to have accidents at night.
Vikram B. Reddy, MD, PhD 7:01
So now what we do is we call this the double staple technique where we divide the rectum right about that area, knowing fully, well, maybe we’re leaving about a centimeter of rectal cuff, which has tissue which can turn cancerous and the chance of developing it, the cancer is actually very low.
Vikram B. Reddy, MD, PhD 7:21
But if someone is coming to us because they’ve had ulcerative colitis, let’s say for 20 years, and they have dysplasia or cancer somewhere else, their risk of developing cancer and that little segment that’s left behind is sufficient enough that we do a scope even then it’s very low, it’s less than 1%. But you know, but we still just to keep an eye on it. It’s too simple procedure we come in, you know, we take a look, biopsy that area and if you find anything, we cut it out, and then we can catch it before it turns into something.
Amber Tresca 7:49
I had my j pouch surgery in in 1999. So I had the old way. I had there were they they took out the mucosal layer, I have a rectal stump, as is what my surgeon called it. And so I do get regular scopes. I am supposed to get them every year I do my best I’m going to say sometimes it goes maybe a few months longer than that. And especially during the pandemic, it has maybe been a little longer. Do you normally see people every year for a scope? Or? Or it does it differ because I also had ulcerative colitis that was not well controlled for 10 years before my surgery. And would that make a difference if someone as you were saying someone who maybe was diagnosed and then had the surgery very quickly after.
Vikram B. Reddy, MD, PhD 8:39
So for patients who were diagnosed and had the surgery very quickly after sometimes, you know, we only do it once every two years, the data say you know one to two years. But for patients who had dysplasia let’s say you had your surgery for dysplasia or cancer, I would definitely say do it at least once a year. Now saying that a lot of patients don’t come back every year because they have a normal life. They have no blood, they have good quality of life. You know, you want to move on also so you know, we don’t fault them if they don’t. But at least I say at least do it every two years.
Amber Tresca 9:09
Yeah, well that’s good to hear because sometimes it is difficult to work that that pouchoscopy in every year. But um, but I also had my surgery because of dysplasia so I know how important it is. So I definitely want to get up get it done for my own peace of mind every so often. And one thing that I’ve encountered that I think some other patients encounter, too, is that when you are having a problem, you don’t really know who to go to all of the time. I think especially in that first couple of years like you were saying that you follow patients for about a year. So what would you say are some of the things that maybe a patient should come to you for versus a situation that they should maybe see their gastroenterologist and I think another thing to mention is that you shouldn’t be breaking up with your gastroenterologist. So let me know, what are some of the things that you that you think you might handle versus what a gastroenterologist might handle?
Vikram B. Reddy, MD, PhD 10:05
It depends on how closely involved with the patient but I tend to follow my patients. And the main reason is, the gastroenterologist is great if there is, let’s say, for example, the biggest complication to the pouch operation or construction pouchitis. Sometimes patients have difficulty getting pregnant, sexual dysfunction in men and women. But for all of these, you know, I think the surgeon who created the pouch or knows enough about the pouch is able to address the patient issue.
Vikram B. Reddy, MD, PhD 10:33
Now, let’s say by accident, you know, you were diagnosed with ulcerative colitis when you really had Crohn’s disease. And let’s say you know, we created a pouch, now you will have some pouch complications. And those pouch complications may require medical therapy, which I think is better with the gastroenterologist. So if there’s any suspicion for Crohn’s, 100%, you should be seeing the gastroenterologist and the surgeon.
Vikram B. Reddy, MD, PhD 10:57
Now the surgeon may take a backseat, because most of this most of the issues with the pouch and Crohn’s can be managed by the gastroenterologist. But if there’s any structural problems like fistulas, if there’s strictures, I think I think a surgeon is better. So when you do that, when you do the connection between the pouch and the anus, a lot of times patients do get a narrowing. And if they get a narrowing, the easiest thing is for the gastroenterologist to do a scope to do a balloon dilation. The problem with the dilation is that it keeps coming back. So if you have a stricture that keeps coming back that can’t be fixed, or you’re going for dilations every couple of weeks, then you need to see a surgeon show any complication that is not easily treated with medications.
Vikram B. Reddy, MD, PhD 11:37
For simple dilation, you need to see a surgeon for the patients that I did the pouch on I do follow them. Unless they live so far away that it’s it’s very difficult for them to come in. I also like to do the pouchosocopy on our patients but but sometimes if they live far away and if their gastroenterologist knows how to manage that pouch, I usually say just go have their scope. And we just check in. And now with the video health and telehealth being more prevalent, it’s actually much easier for those patients that check
Amber Tresca 12:07
Would you say that every pouch is different, each one that you create?
Vikram B. Reddy, MD, PhD 12:12
Yeah, so every pouch is kind of different. Even though we tried to standardize it, you look at the textbooks, they’ll say you know, make the pouch 15 to 20 centimeters. So some surgeons pick 15, some pick 20. And they stick to it. And what you realize is it’s never 15 centimeters or 20 centimeters when you go when you operate, you know you have a really tall guy, you know, because of the narrow pelvis and the height, your pouch size is going to be different. You know, if you have someone who is, you know, kind of…kind of small, you know the pouch size is going to be different.
Vikram B. Reddy, MD, PhD 12:40
So, for each person, that pouch size is configured for that person and for their reach down into the pelvis. The way the pouch lies inside the pelvis is also different. We know that like pouchitis, for example, we have even identified genes which predisposes someone to pouchitis. So even the complications that patients get are unique to each person. And sometimes we tell one person do this. And the same thing doesn’t work on the other person. So I usually think they’re all unique.
Amber Tresca 13:10
That’s so interesting. I have no idea what size mine is. I’m going to ask my endsocopist to let me know.
[MUSIC: About IBD Transition]
Amber Tresca 13:25
Complications. We talked about a few complications. I think the one that I hear most often from other patients is pouchitis. And then I also know that there can be something called cuffitis, you talked about strictures. Can we go through, are there any others can we go through, what some of the other complications might be?
Vikram B. Reddy, MD, PhD 13:43
So let’s talk about pouchitis and cuffitis. The last, the most other complications that can be handled, or one you know after any surgery like this, especially if you’re sick and you had the surgery, you can get hernias, that’s one. Those can be easily fixed.
Vikram B. Reddy, MD, PhD 13:58
The second complication which we used to see a lot more in the old days was obstructions. So when you used to have a big incision and you had surgery done that way, we know that you know if you have a big incision and have the surgery done in an open fashion, that risk of an obstruction is slightly higher. Nowadays we do them laparoscopically or some people do it robotically when we do them. The risk of an obstruction is very low. The studies haven’t really shown how big of a difference that number is, but you know we see it.
Vikram B. Reddy, MD, PhD 14:27
The other complication is you know, you know when we do this operation for young women, they have fertility issues. Now when we’re doing them laparoscopically or robotically, we have seen less of that. But a lot of times you know, whenever they have childbirth or whenever they’re planning on childbirth, sometimes they have to see a specialist a reproductive endocrinologist to help with help with the egg retrieval or to take down the scar tissue on the fallopian tubes.
Vikram B. Reddy, MD, PhD 14:52
And then the last thing is, you know, for women, you know, when they’re when they’re having the baby, you know, the decision has to be made between a c-section and the vaginal delivery. If the baby is small, you know, vaginal deliveries, okay, if the baby is slightly bigger, you know, you don’t want to have a tear in the vagina, which then tears into the pouch and then creates a fistula, which is very hard to fix. So we tend to push more towards c-sections. And we do c-sections.
Vikram B. Reddy, MD, PhD 15:18
The other issue is sometimes small intestine gets stuck around the uterus, and you can have an injury. So a lot of times, you know, I actually joke with all my patients that I hope that I’m in the operating room, and I just get to play with the baby after the baby’s born, I don’t have to do anything and 99% of the case, you know, I just literally get to play with the baby and then I walk away. But we’re always there in the operating in the operating suite when they’re having procedure. So those are sort of the easy complications.
Vikram B. Reddy, MD, PhD 15:47
And then you have the more difficult complication. So the complications that I classify them into two groups, one, that is a complication of the surgery itself. And then the second one is a complication of other disease processes with pouchitis or Crohn’s disease.
Vikram B. Reddy, MD, PhD 16:01
So the complications of the surgery itself. So when you do the surgery, what can sometimes end up happening is that both in men and women, you can accidentally, you know, incorporate another organ, for example, in the back wall of the vagina, sometimes it gets stuck to the staple line and then you can get a fistula, that is the most common complication that we see in women. And then the second complication that is, you know, when we do the connections, because there’s almost like 60-70 centimeters of bowel connection that’s made one of those, if it doesn’t feel well, then you get these fistulas because of the actual technical aspect of that let’s say, you know, we do the surgery, everything comes out fine. And maybe a year later you start having problems then we start suspecting Crohn’s disease. If you obviously get Crohn’s, then we get the gastroenterologist involved, we tried to manage it with medications, but we still have to deal with the fistula.
Vikram B. Reddy, MD, PhD 16:55
It usually involves things like putting in setons doing flaps, or even doing things like pouch advancement to close up the fistula. Then, you know, long term, the big complications are pouchitis, and also cuffitis. So in some patients, you know, if you look at the actual literature, people can even leave up to three to four centimeters, which is about almost two inches of rectal tissue. So obviously, the more cuff that we leave behind, the higher the incidence of essentially ulcerative colitis left behind in the piece of rectum that’s still in your body. So we like to leave the least amount possible, but sometimes, you know, either because of anatomy or something like that, you may end up leaving more than a centimeter or two centimeters, which is about an inch.
Vikram B. Reddy, MD, PhD 17:36
And if you do that, you can get inflammation on that area, you can get dysplasia in that area. And the way we manage it is we manage it, but suppositories initially calm that area down. And if you really can’t calm it down, sometimes we actually go in there and strip that area out and actually advance your pouch. And let’s say we can’t do it, for whatever reason we can’t do it. Sometimes we have to go back on medications. Okay, this is because, you know, normally the body’s anatomy, you know, the small intestine just transfers the stool from one area to another, it is not meant to hang on to, to stop. So with the artificial rectum that we have created with the small intestine, we’re forcing it to hang on to stool. And what we realize is that somehow it triggers an immune response within the walls of the small intestine, with the stool staying in that area. And you get this thing called pouchitis.
Vikram B. Reddy, MD, PhD 18:26
It’s easily treated, you can give some antibiotics, and within a day or two, it goes away, but in some patients, they’re not responsive. And there are some certain conditions like someone who has a liver problem called primary sclerosing cholangitis. They are prone to more pouchitis. And they’re also prone to irritability. Meaning instead of going five times a day, they go like even six to 10 times a day. And it is because of the problem with the liver. The same process that caused their ulcerative colitis can affect their liver and bile ducts within the liver, in those patients tend to have more problems. So pouchitis, this is the biggest reason most of our patients call us.
Amber Tresca 19:00
Do you normally manage the pouchitis or do you have the gastro or how does that work out usually?
Vikram B. Reddy, MD, PhD 19:06
So some of our patients we manage the pouch. And then a lot of like, for example at Cleveland Clinic I think the gastroenterologist manage it. Obviously I don’t want to speak for them. 100% but you know, for us, we did manage our patients with pouchitis, a lot of times they get the patients have both their gastroenterologist and surgeon. Sometimes if the gastroenterologist knows very well how to manage it, let’s say you know they tried the simple things then sometimes we get involved or sometimes you don’t when we try the antibiotics, it doesn’t work. You need to use any biologic therapy for managing pouchitis, we do get the gastroenterologist involved. So it goes both ways.
Amber Tresca 19:41
It sounds like it just depends on how severe it is or maybe how bothersome it is. That type of thing I don’t think I’ve ever heard before about the idea that the stool sitting in essentially part of your small intestine could be something that has an effect on the development of pouchitis, that then leads me as a patient with a j-pouch to think maybe it’s better for you to empty your pouch whenever you feel like there’s something in it and to not hold it.
Amber Tresca 20:12
Although when I had my surgery, I was told to, in the beginning to try to hold it a little bit, to sort of, like, stretch the pouch out and get it working for I don’t know why exactly, but that’s what I was told. So is that your recommendation as well to your new patients, and what do you tell them about emptying?
Vikram B. Reddy, MD, PhD 20:31
So after about two weeks, I actually tell them to hang on to not to empty at all, you know, try to hold it, I actually tell them you know, if you have the urge to go to just stand up and walk around and get distracted by something else. I tell family members to take the patient, you know, somewhere where they get distracted, you know, they like going to the mall, I tell them, take them to the mall, you know, buy them something distract them.
Vikram B. Reddy, MD, PhD 20:54
And for patients who can’t do that, I actually even tell them go sit on the toilet. Because if you’re afraid that it’s going to come out, go sit on the toilet, read a book, play on the iPhone, watch TV, do anything other than released the bowel. So even though you know we think that the stool staying in there and the bacteria within this tool may cause pouchitis, it doesn’t happen in everyone. It happens in a small percentage of patients. And but we want to stretch the pouch because if you stretch the pouch, the capacity increases and patients return to somewhat of a normal life.
[MUSIC: About IBD Piano]
Amber Tresca 21:38
Some people with j-pouches go on to have more surgeries afterwards. And I’ve known people who’ve also had j-pouch reconstructions. Can you talk a little bit maybe about some of those things that you’ve seen and why someone might need to have for instance, a reconstruction or what what might make them a candidate for one?
Vikram B. Reddy, MD, PhD 21:58
Of the biggest reasons patients go for a patch reconstruction is if there’s any complication with the pouch, it can happen right, you know, right away because of the surgery. So let’s say for example, you know, like I was talking about pouch-vaginal fistula. So let’s say the pouch-vaginal fistula is sort of higher, where we can go in through the anus and fix it, or we can just advance the pouch and fix it for whatever reason, let’s say it’s higher. So sometimes we have to go back inside the belly and free up the vagina in the pouch, close up the hole in the vagina, and we tried to fix the hole on the vagina without having to redo the pouch. But sometimes we don’t have a choice. Just taking the pouch away from the vagina, for example, or just digging it away from the sacrum, which is the bone in the back, you end up damaging the pouch in those situations we have to redo a pouch. So the most common reason to have a redo pouch surgery is because of the complications of the initial operation.
Vikram B. Reddy, MD, PhD 22:50
And then the second reason is, you know some patients that have a pouch for a long time, they can develop other complications either narrowing their pouch, sometimes we have seen these structures in the mid pouch, or where the you know, with the small intestine comes into the pouch itself, you can get a narrowing. Anytime you get an narrowing in that area we always worry Crohn’s, we make sure it’s not Crohn’s.
Vikram B. Reddy, MD, PhD 23:11
And but let’s say it happens, you know either bad luck or any reason, then sometimes we have to redo a pouch that when we redo a pouch, we select the patients who are good candidates for it because their redo pouch is never as good as the first pouch. And the reason it’s not as good as not because the pouch is bad. But you know, when we take on someone’s pouch you’re losing let’s say I made a pouch, which is 20 centimeters for you. To make the 20 centimeter pouch, you’re using 40 centimeters of intestine because it’s folded on itself. So if you take out 40 centimeters of intestine, you’re losing a foot and a half of your small intestine, then you’re recreating the pouch. So right off the bat, you’re going to be worse than most patients where the pouch for the first time because things move through much quicker.
Vikram B. Reddy, MD, PhD 23:52
So what I tell patients who are going for a re-do, is I tell them to be prepared. If they’re going five times a day, I tell them to be prepared for anywhere from seven to 10. And then you know it’s easier to redo a pouch in a younger patient because they tend to tolerate operation better. So let’s say you’re 75 you have had a pouch for a long time, let’s say let’s say you have prostate cancer and high radiation and your pouch is damaged and you come for a re-do patch, you may not be the best candidate for the pouch because to adapt to a big operation to adapt to losing your bowel, having the radiation damage in that area, you may not be the best candidate and will have the best quality.
Amber Tresca 24:29
This is all so complicated. And I know I had a second opinion, actually went for third opinion before I had my j-pouch surgery. What do you tell patients about getting second opinions or before they have surgery or before they seek any other kind of treatment in regards to their their pouch?
Vikram B. Reddy, MD, PhD 24:47
So I actually encourage them to get multiple opinions. And here’s the reason why. So for example, you had it for dysplasia. So imagine, you know, measurements I am a patient and You know, had ulcerative colitis, it’s mild, have a completely normal life, and someone found a precancerous lesion. And it’s one little area that probably your gastroenterologist took it away. But because of the dysplasia is a marker of instability, they’re saying you need to have surgery. And then you meet the surgeon for the first time, the surgeon looks at you and says, I’m going to take out your entire colon, rectum, you’re going to have a bag, temporary bag, and then after that you’re going to go five times a day for a one year adjustment period. That is a shock for most patients.
Vikram B. Reddy, MD, PhD 25:31
And sometimes you need to hear it from multiple people, you know, to say, yes, this is the right operation. I know it is stressed that I don’t think we should remove just a little piece of your intestine. But saying that I do tell patients go and seek people who do a lot of pouches, don’t don’t go to, for example, a general surgeon who does colon stuff but not pouches, because then you may get a different answer. They may say, Well, maybe we’ll just take out a part of your intestine.
Vikram B. Reddy, MD, PhD 25:58
So I do tell them to go for second opinion. Now let’s say you’re coming to me, because you’re going to the bathroom, but 20 times a day, I still tell them to go and seek a second opinion for a couple of reasons. One, in different centers, they have different clinical trials, sometimes looking at you with a different set of eyes, someone might say, you know, maybe we should try this, I know you’ve tried this in the past, let’s try combination of this. And if they can somehow diminish your symptoms and improve the quality of life, I think you should seek it out.
Vikram B. Reddy, MD, PhD 26:27
What I tell patients is that, you know, with ulcerative colitis, you have a surgery, you don’t have to be on medications, you don’t have to be on anything. But the truth is, you know, it is a lifestyle changing surgery that, you know, I’m sure you know that your family doesn’t understand that unless they’ve had a pouch. And, you know, you can go to the emergency room. And let’s say for a cough, and most people there will not know, you know anything about the pouch. Your gastroenterologist knows about it, and your surgeon knows about it. And you know, that’s it.
Amber Tresca 26:56
Yes, that’s accurate. And I’ve been asked, Have you brought another bag with you so that if you need to change because when you say j-pouch or that you’ve had surgery for your ulcerative colitis, they assume that you have an ileostomy Yeah, it’s it’s definitely all over the place. Some of the patients, we joke that we might want to print up a little card that explains what a j pouch is, and just hand it out in certain situations. But at the same time, I’m so grateful for my j-pouch, it has changed my life, I was that patient that was going 20 times a day. And I think about that a lot. Because going from going to the bathroom 20 times a day and being so sick, going six times a day and feeling well most of the time. Like that’s fine, like I’m good.
Amber Tresca 27:41
But I think about those patients, you’re talking about that it is it is a big shock for them. And it is a drastic change in their life and, and how how difficult that must be to deal with all of that mentally and physically. So we hope that our pouches are going to last a lifetime. I actually had it said to me, I believe it was my OB/GNY who told me “Well, it’s natural tissue it shouldn’t wear out.” She said to me, I don’t know how accurate that is. But we want them to last. So what can we do to keep them healthy and thinking about our future and as we do get older and as the j-pouches age?
Vikram B. Reddy, MD, PhD 28:19
So the big thing that I tell patients, and I advise them right away is, you know, the only data that we have to prevent pouchitis is that using a probiotic. And the data is weak that that is the only strong evidence that we have. So I tell them to do that.
Vikram B. Reddy, MD, PhD 28:37
And then usually the other things are things like don’t smoke, exercise, there’s data show that if you gain a lot of weight after you had your pouch surgery, because you have fat that position in that area, it actually diminishes the pouch expansion. So I told him that you know, those are hard things to tell someone who is struggling with 20 bowel movements today who’s skinny, and they don’t see that they’d never realize that after their pouch operation.
Vikram B. Reddy, MD, PhD 29:03
I’ve seen people I’ve seen kids who were skinny for their, for their for their age. You know, all of a sudden, you know, I told him you know, you’re going to gain weight you’re going to become you’re going to be normal, you’re going to be like your peers, and they don’t believe it at that moment. And then usually two years later, they come back and they’re like, I cannot believe I’m back to back to my peer level. So we always tell them don’t don’t go overboard.
Vikram B. Reddy, MD, PhD 29:31
And in women the other thing that I tell them is definitely you know, focus on the key goals. pelvic floor is important because, you know, women are prone to prolapse, especially if they have children if their pelvic floor is weak if they have connective tissue disorders. So that is one thing that I do worry about long term in women because I’ve seen some women who have had pouch prolapses and the surgery for prolapse is not the same as rectal prolapse. Rectal prolapse because we can cut it out and do it just through the through the anus itself for women, we tend to do it differently with pouches we go in, we got we have to go back in through the belly and kind of pull it up.
Vikram B. Reddy, MD, PhD 30:12
So those are the things that I tell them to focus on the pouch is has can last their entire lifetime. We have done these operations since 1985. Not me personally, and I’ve inherited some patients who had their projects done in 1985. They seem to have a good quality of life. But the bigger thing is, you know, as people age, they get other issues which can complicate a pouch,
Amber Tresca 30:32
You might have patients that come to you and they don’t know what to do, because with ulcerative colitis, you have some choices available to you. What do you tell your patients who are seeking counsel about whether or not they should have j-pouch surgery?
Vikram B. Reddy, MD, PhD 30:47
So for those patients, you know, especially if they’ve tried everything, and despite trying everything, they’re struggling, and I’ve seen some patients who have had to change their, their lifestyle because of their symptoms, you know, they’re not able to work. I’ve seen some kids who are not able to go to school or they’re getting homeschooled.
Vikram B. Reddy, MD, PhD 31:05
If it is if your ulcerative colitis is affecting your quality of life that you’re not able to live, I would say definitely pick a pouch. And even if you’re pessimistic about the pouch, one, you know, once you have the pouch operation, you realize that you can get your life back in what I always tell them is worst case, even if you have every complication that’s not meant to happen to you with the pouch. We can always take out the pouch and give you an ileostomy. Worst case scenario, you still have good quality of life. So you know, I know surgery should be the last resort. But it should be in something that you consider.
Amber Tresca 31:39
Dr. Reddy thank you so much for all of your work in working with j-pouch patients and ulcerative colitis patients and helping people to get a better quality of life. Talking to you has been so informative for me even as a person who has a 21 year old j-pouch I learned so much. Thank you for coming on my show. Thank you for making the time. And I’m so glad that we can get this information out to people and so that they can learn more about j-pouches and how it can be a great treatment option for people with ulcerative colitis. So thank you.
Vikram B. Reddy, MD, PhD 32:12
Thank you so much Amber. I think this was great. Patients keep asking me you know where they can get more information about pouches and then I can refer them to your podcast.
[MUSIC: About IBD Dance Party]
Amber Tresca 32:24
Hey super listener! Thanks to Dr Reddy for providing so much information about j-pouches. One last thing that I will say is that if you are considering a j-pouch, you may find it helpful to get an opinion from a pouch specialist like Dr Reddy at an institution that specializes in IBD, such as Yale. Links to more information about the topics we discussed is in the show notes and on my Episode 103 page on AboutIBD.com.
You can follow me across all social media as AboutIBD. If you want to leave me a voice message for use on a future show, you can contact me at speakpipe.com/aboutIBD.
Thanks for listening, and remember, until next time, I want you to know more About IBD.
About IBD is a production of Mal and Tal Enterprises.
It is written, produced, and directed by me, Amber Tresca.
Mix and sound design is by Mac Cooney.
Theme music is from Cooney Studio.
Reference:
- Feuerstein JD, Isaacs KL, Schneider Y, et al. AGA Clinical Practice Guidelines on the Management of Moderate to Severe Ulcerative Colitis. Gastroenterology. 2020;158(5):1450-1461. doi:10.1053/j.gastro.2020.01.006.