Addressing Fertility Issues and IBD

Podcast Transcript

Dr. Scott Steele: Butts and Guts, a Cleveland Clinic podcast, exploring your digestive and surgical health from end to end.

Hi again, everyone. And welcome to another episode of Butts and Guts. I'm your host, Scott Steele, the Chair of Colorectal Surgery here at the Cleveland Clinic in beautiful Cleveland, Ohio. I'm absolutely pleased to have on Dr. Tracy Hull, who is a professor of surgery at Learner College of Medicine of Case Western University. Also in the Department of Colorectal Surgery as our vice chair. She's also the holder of the Victor W. Faso MD chair in Cleveland Clinics Digestive Disease and Surgery Institute.

Tracy, welcome to Butts and Guts. So can you tell us a little bit of background about yourself, where you're from, where'd you train, and how did it come to the point that you're here at the Cleveland Clinic?

Dr. Tracy Hull: So I am from Ohio and I was born in Columbus, Ohio when my dad was in college in veterinary school, and then they returned to their hometown, which was Fremont, which is kind of over by Toledo, Ohio. And I grew up there and went to Ohio State. I think that was a foregone conclusion. I did medical school and undergrad there, and then went to Syracuse, New York and did my surgery residency there, and then came to the Cleveland Clinic for my colorectal fellowship and have been here ever since.

Dr. Scott Steele: So for those of you new listeners of the program, you may not know that we are blessed with the world's greatest IBD center. And we have one of the greatest IBD surgeons in Dr. Tracy Hull and so we're going to start with a really high level overview. Tell us what is IBD?

Dr. Tracy Hull: So there's a lot of speculation exactly what it is, but I think the easiest way to think of it is it's an inflammatory condition, just like rheumatoid arthritis is an inflammatory condition. If you develop and have some kind of genetic predisposition to it, and then you have some kind of environmental thing that sets it off, like some kind of cue. When I was in medical school, they thought it was toothpaste and we were all afraid to brush our teeth. There have been many things and nothing has really been absolutely proven to be correct.

There's basically two different kinds. There is Crohn's disease and then there is ulcerative colitis. Crohn's disease can cause inflammation anywhere from your mouth to your anus. But most commonly at the end of the small bowel called the terminal ileum. Ulcerative colitis, as far as bowel issues go, only is in the colon. It starts at the very furthest part of the colon, where it meets the anal area. If it progresses, it progresses then upstream and stops before it gets in the small bowel.

You can also have issues of inflammation that affects your joints and gives you Inflammatory Bowel Disease type arthritis. You can have eye issue, it can affect your liver and cause inflammation in your liver and other problems there. So there's other areas that the inflammation can effect is still considered Inflammatory Bowel Disease.

Dr. Scott Steele: You touched on a couple of the things that I was going to ask you, but just telling, does everybody fit nicely, like hand into a glove in terms of the different types of IBD or can you have a little bit of mixture both and in really rough over terms, how common is IBD?

Dr. Tracy Hull: It like every other medical illness. People can have variations of the theme. So are there people that may have a little inflammation in their terminal ileum and we still think that they have ulcerative colitis, a little small bowel disease? Possibly. I think we start getting concerned as far as when we do surgery, when they have things that aren't exactly as we feel like the textbook is written, but I think that it's like every other disease. It is not exactly follow one little script or one little algorithm.

So we used to say that Inflammatory Bowel Disease was, particularly Crohn's disease, more common when I was in medical school in the 80s, we said more in Southern United, not so much in the north. More common in the cities and not in rural areas. And there was a lot of speculation does a lot of the cleanliness we do and the wiping of desks and all that, is that what is leading to some of this? I don't know. We used to not see it in what we would have termed developing countries, but now we're seeing it everywhere.

It has a little bit of a different genetic flavor in different places. For instance, India and Egypt, they may see more jejunal disease overall than we see. So I think there's a little genetic variation to it in that respect. Crohn's disease is increasing in number. Ulcerative colitis is either held in steady or increasing a little bit.

Dr. Scott Steele: So let's go into a little portion that I like to call, Truth or Myth. Truth or Myth: Inflammatory Bowel Disease, IBD, and Irritable Bowel Syndrome, IBS, are the same condition? Truth or Myth?

Dr. Tracy Hull: I think we can comfortably say that they are not. It doesn't mean if you have irritable bowel, you can't then have Inflammatory Bowel Disease. However, a lot of patients, it's sometimes very difficult to make the diagnosis. And unfortunately, a lot of patients are labeled as having Inflammatory Bowel Disease and they really have... Or have Irritable Bowel Syndrome, IBS, and they really have Inflammatory Bowel Disease. And it will delay sometimes the treatment or moving things forward. So yes, you could have both. They are definitely not the same

Dr. Scott Steele: Truth or Myth: one of the topics we're going to get into a little bit today, is women who have IBD have reduced fertility?

Dr. Tracy Hull: So when you think of fertility, you think of how many children a woman would have over her biological ability to have children. And it is a much bigger discussion than that. Women certainly have the ability to have children in the same number. They may not have the same sexual desire if they have active Inflammatory Bowel Disease. We know that surgery does decrease the ability to become pregnant and have to resort sometimes to assisted reproduction. Your ability to have children throughout your lifetime is about the same. The fertility is about the same, the fecundity, how easy it is to get pregnant, that may be more of a challenging thing.

Dr. Scott Steele: Let's talk about that aspect too. So what are other aspects, including the treatment of IBD, that may affect fertility? So one of the questions that comes up a lot is, well, if I take this medication, is it going to affect fertility versus surgery? Is there some surgeries that we do in IBD that may affect fertility? How do you go about counseling, what amounts a lot of times into young patients, about these scenarios?

Dr. Tracy Hull: Exactly. Very commonly it's young people that are affected with this and there are really important decisions that they have to be thinking about. So I think you have to, if we're going to think broadly, you have to think about all the things that go into sexual function, which is desire, which I just alluded to. And we know that people that are truly ill with Inflammatory Bowel Disease have less desires. So therapy will help them.

If patients are interested, men and women, interested in becoming parents, sometimes we have to adjust their medications. When you talk about Crohn's disease, some patients with Crohn's disease, their disease goes into remission when women are pregnant for whatever reason. So there's lots of different things. We know that for Inflammatory Bowel Disease, as far as a pelvic pouch. So we're talking about ulcerative colitis and having surgery. We know that if you're medically treated and stable, about 90% of women are able to achieve pregnancy. And it is probably about 40% in women after they've had a pelvic pouch.

So we know that there are things that occur when we do surgery that are detrimental to be able to achieve pregnancy. A lot of those are felt to be related to scar tissue around the tubes and the ovaries, things like that. One of the difficulties with that is when you look at some of the studies that look at minimally invasive, like a robot or a laparoscopic approach, versus an open approach, while we can document that the adhesions are definitely less in the minimally invasive approach, the chances of becoming pregnant with unprotected intercourse for a year are similar in the two groups. There's so many things we don't understand that we are still trying to study.

Dr. Scott Steele: So one of the unique aspects about being here at the Cleveland Clinic is we have the ability to have multidisciplinary clinics, multidisciplinary conferences, and for both IBD, as well as cancer, we have a whole network of people who are interested in this topic, the idea of preserving fertility, preserving fecundity in our patients.

So what are some of those unique approaches, those unique aspects, that we have in order to address these issues?

Dr. Tracy Hull: So we think about it right from the get go as surgeons, particularly number one, before we even do surgery, we think about it. If we're worried about cancer therapy and radiation, we may bank sperm or preserve eggs. So we have that capability to do those things. I know that most Inflammatory Bowel Disease patients, that's not top of the idea of about having radiation therapy before you would have treatment, but there is a growing number of young people that are getting colorectal cancer that were worried about that.

So we think about those things right from the get go in young people. Transposition of ovaries, all kinds of things, so that's even before we think about surgical intervention. So when we're thinking about surgical intervention we are very cognizant of trying to not be touching the ovaries and the tubes in women, where the nerve structures are in women and men to preserve the ability to be able to have reproductive capability.

So we're constantly thinking about that in the OR and that is top of the mind as we're doing surgery. So we're thinking about those things. And then after surgery, if there are continued problems, we have specialists here that help with assisted reproduction and the different aspects of it.

One thing I thought was always interesting that, in a Crohn's patient, she couldn't get pregnant and we operated on her eventually and just took her tubes out because her tubes were quite enlarged from all the scar tissue. And then they were able to harvest eggs and do in vitro fertilization. And one of the things about it was that I never realized was that her tubes were filled with fluid and quite enlarged. And every time she would ovulate, it would send a gush of fluid with the egg and push it right out her uterus, so that the sperm didn't get a chance to meet and then implant. And I always thought that was just an amazing thing because I would've never thought of that. And we took her tubes out and she still needed assistance, but she was able to get pregnant and carry a baby in a uterus.

So we're just trying to think about it right down the line from before we ever operate on somebody until after when they're having issues. And the other thing that you touched on, that I think is really wonderful here, is the sense of teamwork for every problem. So everybody is willing to help and be part of the team and brainstorm of what's the best thing for a couple that, or a person, that's just trying to achieve pregnancy.

Dr. Scott Steele: So one of the things that we did touch upon there is this whole concept of IBD cancer, cancer related IBD, what is that combination? We know that IBD is obviously, and we're not saying that that's cancer, but are these patients at an increased risk for cancer?

Dr. Tracy Hull: So in ulcerative colitis, which is, as you might recall, I said, only effects the colon. After eight years, we really start to, even if they are relatively stable on their medications, we really start to follow them carefully with colonoscopies and biopsies, because the risk of cancer does go up. It goes up exponentially, kind of around eight to 12 years. And it doesn't mean that every patient needs to have their colon out, don't get me wrong, but we follow them carefully. And we're looking for biopsies of pre-cancerous changes, and yes, they can get cancer. That's why, that's why we follow them. And some patients unfortunately have it earlier than others, but the goal is to not do unnecessary surgery, but to find it before it turns into a problem. So that that's in ulcerative colitis.

It's interesting in Crohn's disease. When I was a fellow here, the thought was Crohn's disease doesn't turn into cancer and that also is not true. I think that there's many aspects of this that that can be leading to it, the chronic irritation of the inflammatory process, or as people get older, some people just develop cancer. The risk is true for the normal population. So for Crohn's disease, yes, they can develop cancer.

The other thing about Crohn's disease that I mentioned is you can have it in your small bowel. And we have had a very small number of patients who have had Crohn's disease in their small bowel in areas where they've had long standing narrowing, but the narrowing hasn't been severe enough that it's required surgery. And then something changes. We get an x-ray study and lo and behold, it doesn't look right and we operate and there's a cancer. It's just a very small number of patients, but you have to think about that.

Dr. Scott Steele: So what is on the horizon in terms of additional research or treatment for IBD, especially with regards to those fertility issues that we are talking about here today?

Dr. Tracy Hull: So I think the biggest is good medicine to put us out business as surgeons. I think that we have had a decrease in the number of people that have required surgery for ulcerative colitis and pelvic pouches over the last three decades. We have been blessed with better medications. It isn't everybody, it doesn't take care of everybody, but I think that is really exciting. And I'm hoping that in the future we'll do even less surgery. And I know that sounds silly coming from a surgeon, but these patients, they suffer a lot and I'm hoping that, particularly ulcerative colitis and Crohn's both, that we can come up with better treatment.

So that's the first thing. We went many years and had just steroids and Imuran, which was okay, but medications are just so much better now. So that's as far as prevention, or not prevention, or heading it off at the pass or treatment, or however you want to look at it. People are looking at so many different aspects of a whole gambit of the disease.

Do I think there'll be a cure in my, well, probably not my lifetime, but do I think there'll be a cure in the next generation's lifetime? I would love to say yes, I don't think so, but we are learning more and more. It's one of those diseases the more we learn the less we know. So I think that makes it even more difficult to, to wrap our head around.

As far as fertility, as I said, we're aggressively pursuing as much minimally invasive as possible, because I think even though our studies don't show that the ability, the fecundity, the ability to get pregnant in a year with unprotected intercourse is different, I think as we go along, it may be different. I think that we are so early in looking at some of these studies and our follow up could be longer. These are young people and they have still many years of reproductive possibilities.

I think that our ability to work with the reproductive specialists is improving. Heavens, here we've done uterine transplants and then had women that had babies who have had uterine transplants. I've seen pictures of these babies. That's a miracle. We are trying to push the envelope in so many different ways in reproductive health and how women who desire pregnancy can achieve that.

\So I think that, in those aspects, it's just going to continue to really continue to grow. We have to think of men, because if you do surgery in men, there can be issues with reproduction. And I think that we have gotten better about harvesting of sperm. There's some very technical ways that they can do it when a man has an orgasm and the sperm doesn't come out the penis like it's supposed to. And I think in the future, those ways, there's people that are very passionately studying that. And I think those different treatments are also going to gain more and more acceptance as more and more young people seek treatment for it.

Dr. Scott Steele: If I'm a young patient, young woman, for example, that has had a pelvic pouch procedure where the rectum, the colon's removed and the new rectum that J pouch or one of the pelvic pouches is made, and now they're pregnant. I know we can't lump everybody together, but do you have any thoughts about carrying that pregnancy, vaginal deliveries, how it affects the pouch, the pouch function, during that? That a common question that's asked. And do you have any advice there?

Dr. Tracy Hull: Yeah. So let's back up one step and think about, because this is where we get a lot of questions to number one, people that have a bag on the outside, in an ileostomy, and these women get pregnant and I get a lot of inquiries from their obstetricians, "What should we do with this woman who has an ileostomy? Oh my goodness, how is that going to happen?"

So the uterus is slow to become enlarged, which is wonderful, and so that it just pushes the ileostomy up and it usually just stretches it out just like you stretch skin out. Same thing with the pelvic pouch. It just pushes it more up and out of the way, both groups of women, when they're pregnant, women with stomas have to empty them a lot of times more frequently, they may have to change their external pouch more frequently. Patients with J pouches may have to go to the bathroom more frequently.

But after they've completed their pregnancy and their hormones are back into a more homeostatic nature, they both tend to go back to the function, very close to what they were before and our study show that.

Delivery is very controversial. So the woman who has Crohn's disease that still has her anus intact and does not have a stoma and has anal disease, I think most people would recommend that woman have a C-section because if she tears into her diseased anal canal, getting that to heal, that might be the beginning of a permanent bag on the outside. A woman that's had her anus removed for medical reasons and has a permanently ostomy, if she would tear typically that isn't as much of a catastrophe and that will heal. So, that's how I look at those two instances.

As far as a pelvic pouch poop that come out of a pelvic pouch is never solid. It's like pudding. The best it is, is like thick baby poop. So the anal muscle has to be as strong as possible. When we've looked at women who had C-sections versus vaginal deliveries in the short term, their problems with fecal incontinence after their back and hormonal homeostasis is the same.

However, when we do really thorough studies, the women who have vaginally delivered have a significantly higher proportion of anterior sphincter defects that may not be noticed at the time of delivery because they're young and their muscles otherwise compensate. And what's going to happen to those women over time? We don't know. We are very cautious about what we recommend at the clinic. And I have a very low threshold to recommend a C-section. I have had multiple women tear into their anal area and fixing that is almost impossible. So I would tend to encourage people more on the side of having a C-section. And that's kind of been the tradition we've had here.

We have a very strong as you know, pelvic floor section, and we take care of a lot of women with fecal incontinence. The problem over time with men, but women because that's what we're talking about, is the issues of fecal incontinence that become a problem, particularly as they age and you need those great anal sphincter muscles for a pelvic pouch for good function.

Dr. Scott Steele: Again, this, this controversial issue raises the importance of having these discussions early on in the pregnancy with all parties that are involved. So we always like to get to know our guests a little bit better. So we're going to switch over some quick hitters. First of all, what's your favorite food?

Dr. Tracy Hull: Lobster.

Dr. Scott Steele: What is your favorite sport to player to watch or both?

Dr. Tracy Hull: Ohio State football

Dr. Scott Steele: Touch and Go Badgers. And what is, you've traveled around the world being asked to be a global speaker, what is your favorite travel spot that you've had?

Dr. Tracy Hull: To go and speak? My favorite travel spot has been many different places in Poland.

Dr. Scott Steele: And then finally you said you're an Ohio girl and you've been here up in Northeast Ohio for quite a while. So what do you like about Cleveland?

Dr. Tracy Hull: Cleveland's like a sleeper city we have a lot of really great things to do here. Our museums, this used to be a very rich city and we have museums that have endowments that are absolutely fabulous. We have the second largest section of Broadway outside of New York city in downtown Cleveland. We have beautiful parks that surround our city that you can enjoy and so many different aspects of it. We have a lake and the lake now is clean and you can swim in it. I love to fish for walleye. You can fish for walleye in the spring and early summer.

There is just so many things that you can do. You can live in a house and you can have a yard. And during the pandemic, I've gotten lots of patients from for instance, New York city because people could work remotely and they needed a place that they could have a yard for their kids. So Cleveland's got so much to offer.

Dr. Scott Steele: So final take home message for our listeners regarding either IBD or this concept of IBD infertility?

Dr. Tracy Hull: It's a team effort. You have to have a good team approach with your doctors and you have to feel comfortable that they're listening to you and that your expectations and goals are being heard. They may not be able to be reached, but I think that the ability to really have a good team of doctors taking care of you is important in this day and age.

Dr. Scott Steele: That's fantastic stuff. And so to learn more about IBD treatment at the Cleveland Clinic and to download a free guide, please visit clevelandclinic.org/ibd. That's clevelandclinic.org/ibd. And to speak with a specialist in the Digestive Disease and Surgery Institute, please call 216.444.7000. That's 216.444.7000.

And remember it's important for you and your family to continue to receive medical care, regular checkups, and screenings and rest assured here at the Cleveland Clinic, we're taking all the necessary precautions to sterilize our facilities and to protect our patients and caregivers.

Dr. Hull, thanks so much for joining us on Butts and Guts.

Dr. Tracy Hull: Thank you very much for having me. It was a pleasure.

Dr. Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts and Guts.