Living with IBD: What Patients and Families Should Know about Surgery and Hospitalization

Inflammatory bowel disease (IBD) is a challenging condition that affects up to one million people in the U.S., including 100,000 children younger than age 18. In this educational video, a panel of experts from the Center for Pediatric Inflammatory Bowel Disease at The Children’s Hospital of Philadelphia discuss surgical treatment of IBD. Pediatric surgeons and advanced practice nurses answer questions about when surgery is needed and the different surgical procedures used to treat Crohn’s disease and ulcerative colitis.


Living with IBD: What Patients and Families Should Know

Susan Peck, MSN:  All right panel, we're ready to get started. Welcome back to our educational video. My name is Susan Peck. I'm a nurse practitioner in the Division of Gastroenterology, Hematology and Nutrition at The Children's Hospital of Philadelphia. This episode is on surgery and hospitalization. I would like for you to meet our panel.

Natalie Walker, RN: I'm Natalie Walker, a pediatric nurse practitioner in pediatric surgery.

Bob Baldassano, MD: Bob Baldassano, director of Center for Pediatric Inflammatory Bowel Disease.

Linda DeSantis, RN: I'm Linda DeSantis. I'm the nurse manager for the Inpatient GI Unit.

Peter Mattei, MD: I'm Peter Mattei, pediatric surgeon.

Noelle Bates, RN: I'm Noelle Bates. I'm the inpatient nurse practitioner for the Division of GI and Nutrition.

Susan Peck, MSNThank you very much and we're happy to have you with us today.

Dr. Baldassano, since this episode is on surgery, when patients have inflammatory bowel disease, when is surgery indicated?

Bob Baldassano, MD: Well, when people who have inflammatory bowel disease, again, we all know there's different types of inflammatory bowel disease, and because of that, there's different therapies. And so we typically like to try to use medical therapies, but often surgical therapies are very important for us to take care of our patients. And so patients who have Crohn's disease, they often may require surgeries for if they have a lot of scarring or narrowing with the near intestinal tract, if they develop abscesses, or if they develop a problem called perirectal disease. This is when you have abscess or infections around your rectum. And when this happens, that really is a medical/surgical problem and it's really very important that the medical team and the surgical team works together to really give the best care. With ulcerative colitis, again, surgery often is an important therapy for some people. And, I mean, Dr. Mattei will be talking about this — about having sometimes to remove the part of the intestinal tract that is irritated or inflamed to improve quality of life and to treat our patients.

Susan Peck, MSN: So Dr. Mattei, what types of surgeries are available for patients with inflammatory bowel disease? Do families have different options?

Peter Mattei, MD: Yes, and of course it does depend also on the type of disease, the type of inflammatory bowel disease that we're dealing with. In general, surgery involves removing that portion of the intestine that is the culprit that is causing the problem. Surgery is not a cure for either of the diseases, but we can help patients get over a particularly difficult complication or difficult time in their disease. So for ulcerative colitis we would remove the colon and the rectum, which are the organs that are involved with ulcerative colitis. And in Crohn's disease, because it can affect multiple different parts of the bowel, we would remove that part of the bowel that's most involved.

Susan Peck, MSNCan patients with inflammatory bowel disease have laparoscopic surgery?

Peter Mattei, MD: Laparoscopic — most patients who need surgery for inflammatory bowel disease are candidates for minimally invasive surgery or laparoscopy. And with laparoscopic surgery we can use much smaller incisions and the patients generally recover more quickly and have less pain after surgery.

Susan Peck, MSNWhen you say — when I hear surgeons talking about operations they sometimes use the word resection. What does that mean?

Peter Mattei, MD: Resection is exactly the removal of the offending part of the intestine that is causing the problem. Not every patient needs a resection. In some cases, if there's a narrow stricture or narrowing of the bowel then we can do what we call a strictureplasty, which involves preserving the bowel. Because after a while, if you remove too much of the bowel, you can end up with short bowel or not enough bowel to absorb — digest the food and absorb the nutrients that you need. And so in that case if we need to preserve the length of the bowel we can do a strictureplasty, which is a way of opening up that narrow spot.

Bob Baldassano, MD: You mentioned laparoscopic, so you're saying you use scopes? How exactly is that different than regular surgery?

Peter Mattei, MD: That's right. Well, with traditional surgery you would make a generally rather large incision. Because in order to — even though we're removing a small segment of the intestine, we tend to need a large incision in order to mobilize the part of the intestine that we need to remove. But nowadays with laparoscopy, and mostly what we're talking about are laparoscopic-assisted operations, where part of the operation is done laparoscopically. And what that means is that we use tiny incisions, typically half an inch to three-quarters of an inch in size, one of which is for a telescope or laparoscope in which we can see what we're doing. And then through the other small incision we can use various instruments to mobilize the bowel, divide adhesions, and put us in a situation where we can actually use a very small incision to bring the bowel up out of the abdomen and resect it or remove it.

Bob Baldassano, MD: So you mentioned one of the advantages is scars are smaller. Are there any other advantages of laparoscopic?

Peter Mattei, MD: We do see that patients recover more quickly after laparoscopic surgery. They have less pain and they're able to resume their activities both in the short-term, even just walking in the hallways after the surgery, but also resuming their usual activities such as going back to school or work and sports and things like that. I think the greatest appeal to most patients and their families is the scarring, but for us we also see other advantages including the more rapid return to functional activities.

Bob Baldassano, MD: And for laparoscopic surgery, is that done everywhere? Do all surgeons nowadays just do it that way or is it a specialty that a surgeon develops?

Peter Mattei, MD: It's becoming more and more common everywhere, but I don't think it's available everywhere yet, especially in inflammatory bowel disease. But in specialized centers we're using it much more frequently. In fact, it's rare for a patient to undergo a very large incision and large operation anymore.

Susan Peck, MSN: And when would a patient not be a candidate for laparoscopic surgery?

Peter Mattei, MD: That's rare in our population in children. But patients who've had multiple operations where they would have very many adhesions, lots of scar tissue, that could make it very difficult to do a laparoscopic operation because then it's not safe sometimes to manipulate the bowel under those circumstances.

Susan Peck, MSNDr. Baldassano mentioned perirectal or perianal disease. Are there special operations involved in taking care of that type of inflammatory bowel disease?

Peter Mattei, MD: Yes, there are. In fact, most patients with, and this applies mostly to patients with Crohn's disease. Perianal disease is very uncommon in patients with ulcerative colitis, but with Crohn's disease there is a subset. There are patients who have perirectal issues including abscesses, fistulas and fissures. And most of those patients will at some point require an examination under anesthesia in which we can examine the patient very carefully in a painless way and determine the extent of their disease. And then we can treat acute problems such as abscesses; which typically involve an incision and drainage of the abscess; sometimes placement of a temporary drain, which is a silicone rubber tube that drains the material for a certain amount of time to allow healing. And then there are fistulas in which case we would apply a seton or a silk thread that would keep the fistula under control and prevent infectious complications.

Bob Baldassano, MD: And this is really resulting in much better outcomes. Probably five or 10 years ago there was a tendency that the medical people didn't include the surgical people in this particular approach. It really wasn't the team approach that we have now. And doing this team approach really has made the outcomes of this particular problem just much better.

Susan Peck, MSN: I know that many patients worry about having to have a bag on their abdomen or belly when you're talking about surgery. When is an ostomy necessary and what exactly is an ostomy? I'll turn that over to Dr. Mattei and Natalie.

Peter Mattei, MD: Well, an ostomy is, luckily, are very rarely required these days. It used to be much more common before all of the wonderful and improved medications that we have now. But generally we use ostomies to divert the stool from the area of involvement, either another part of the intestine or the perianal area. But, again, I want to stress the fact that these are very rarely done these days and only for very extreme complications or very difficult to control disease.

Natalie Walker, RN: And an ostomy, by definition, is an operation where we make an opening in the skin and pull up a portion of the intestine, and that is where the child would go to the bathroom into the bag.

Susan Peck, MSNI see that we have an audience question.

Audience Member: What do I have to do to take care of it? Can I go to school? Can I swim and play sports with an ostomy?

Natalie Walker, RN: You can do all of the above. And so to take care of your ostomy you use a pouch and a flange that goes onto your abdomen around the ostomy and that collects stool. You're able to go to school and live your daily life, including sports and swimming, all with an ostomy.

Audience Member: What does an ostomy look like and will I have it forever?

Natalie Walker, RN: In most cases, the ostomies are temporary. And an ostomy is in your right lower portion of your abdomen and it's red and moist and it has stool coming out of it into the pouch.

Susan Peck, MSN: And the pouch is a bag?

Natalie Walker, RN: It is a bag.

Susan Peck, MSN: Can you make those bags attractive?

Noelle Bates, RN: You know, we do the absolute best that we can. And I think we've all learned over time sort of tricks of the trade to make ostomies as much of a low profile device, so under clothes they're very hard to detect. In fact, this summer at our IBD camp we had a few children who had ostomies and they were in the pool swimming with everyone else. And a few children who knew they were going to go into surgery in the fall were very curious to find out who those children were because you can't pick them out in the crowd, and that's the very nice thing.

Susan Peck, MSN: Hospitalization — does everyone who has IBD go into the hospital?

Noelle Bates, RN: Certainly not. So since I'm an inpatient nurse practitioner, I mostly see children who are diagnosed with their inflammatory bowel disease as inpatients. The very nice thing for me is that I can tell them, "Just because you are diagnosed as an inpatient and you are very sick at the time of diagnosis doesn't mean that every single time you have a flare of your disease you'll have to come back in." Likewise, the great majority of our patients are diagnosed as outpatients, and they remain outpatients. So when they are feeling ill, when they do have a flare of their disease, they work more through the telephone system. Sometimes having a sick visit with their pediatrician or primary care nurse practitioner. Sometimes in communication with their outpatient GI team to manage their disease outpatients. So certainly not everyone has to come in. But if you do have to come in and you do have to be hospitalized, we're prepared and we can help you make that transition.

Susan Peck, MSNDr. Baldassano, when would we — when would somebody have to come into the hospital?

Bob Baldassano, MD: Well, the exciting thing is with the new therapies we have available now, hospitalization is much less frequent. Ten years ago or 15 years ago, visiting the Hospital, staying in the Hospital if you have inflammatory bowel disease was not uncommon. Now, it's very uncommon. I mean, last year at our institution we saw 1,600 kids with inflammatory bowel disease. Maybe we have two or three in the Hospital at any one time to give you an idea that most people never actually get admitted into the Hospital, even for diagnosis or for therapy. But times that we need to have people come into the Hospital is if the symptoms are such that they need to be corrected quickly. You can make people better faster if they come into the Hospital than often to try to do this as an outpatient. For certain concerns that we're afraid maybe surgery is necessary, we'd want these patients to come in to watch them closely, because if you do need to get surgery, we can get it done a lot quicker if you're already in the Hospital. So in certain instances, hospitalization is really very necessary. But in most cases fortunately, it's something nowadays that we just don't need to — I don't consider that part of the care of an IBD patient to say, "Oh, you're going to spend time in the Hospital." Twenty years ago, I think most physicians would've said, "You're going to spend time in the hospital." And lucky nowadays we don't seem to have to do that with our new therapies and our new approaches.

Susan Peck, MSN: We have another audience question.

Audience Member: What is the Hospital like if I have to go?

Susan Peck, MSNThat's a great question. Linda, can you address that?

Linda DeSantis, RN: The Inpatient GI Unit is a 24-bed unit. It's all single rooms, so every patient has their own private room and bathroom in their own room. There's a setup there so that parents can stay overnight. We have lots of additional activities and diversions, everything for patients who are in the Hospital for a while. We have some child life therapists, we have teen activities, we have a music room. We also have an educational center on the Inpatient Unit where the nurses that are experts in the care of children with IBD staff that area and help with educational teaching for the entire family while they're there, be it in ostomy or any other additional care that they may need and educational stuff to go home with. Our whole goal is to work with the whole team and transition these patients through their recovery and to their normal daily activities at home.

Bob Baldassano, MD: It's really the philosophy now — different than, again, 20 years ago — is when you were hospitalized, you were in your bed, and if you got out of your bed you'd get in trouble.

Linda DeSantis, RN: Right.

Bob Baldassano, MD: Nowadays it seems like we really try to get kids up and doing things, doing your homework and having whatever activities that you're able to do and to try not to make it so that you are stuck in your bed the whole time.

Linda DeSantis, RN: Right. There's plenty of activities. And the nurses get patients' families involved in every aspect of their care including those types of activities while they're in the Hospital so that we can get them home quickly.

Susan Peck, MSN: What is the expertise of the nursing staff? Do they know about inflammatory bowel disease?

Noelle Bates, RN: Oh, absolutely. All of our nurses go through extensive training to learn about the ins and outs of every single GI disorder and not just inflammatory bowel disease. But they are considered the experts in the Hospital.

Susan Peck, MSNSo what — who will meet the family when they come into Hospital? Who do — who is the team?

Noelle Bates, RN: As outpatients, families are very used to having two people at most that they converse with and see during clinical visits, their attending physician and either a fellow physician or a nurse practitioner. When they become inpatient, we have a vastly huge inpatient team that's dedicated to caring for your child. You may or may not see those people you've come to know and have built a rapport with as an outpatient, but that doesn't mean we aren't communicating all the time. And our team is rather large. We have an attending physician, a fellow physician, myself, I'm always on service in the Hospital. But we also have a GI social worker, we have nutritionists, dietitians, we have psychologists, psychiatrists, child life therapists. It's a very huge team. We also, being a teaching hospital, have resident physicians who are learning how to become pediatricians, who are doctors, but are learning how to become pediatricians and are rotating on a GI service to learn more about GI specifically. We are a bit of an intimidating group, but we try to keep our sizes down when we come into your room. But at some point you'll be meeting very many of us.

Susan Peck, MSN: Dr. Baldassano, if, say, Dr. Mattei needs to be consulted, how does that work? How do other services get involved in the care of children?

Bob Baldassano, MD: Well, when a child's admitted into the Hospital and admitted to the GI service, typically it would be the GI attending along with the team that would decide on, "Do we need to consult or do we need to get the expertise of some of the other people in the Hospital?" And with inflammatory bowel disease the most common is surgery. And so if once we evaluated the patient, then if we felt that we needed the surgical input, then what we would do is call up surgery, put in what we call a surgical consult, the surgeons would come by and do their evaluation. Before we would do that, though, we would always speak to the patient and their family so that they're expecting and they know who's going to be walking in and the type of questions that'll probably be asked of them. Then once the surgeons or whatever consult service we've asked to come for help, after they've evaluated the situation, once again we get together as a team and decide on what's the best care for the patient.

Susan Peck, MSN: So what would they expect if they were to meet you, Dr. Mattei? What would happen?

Peter Mattei, MD: Well, typically one of my residents or fellows from the surgery team would come by to introduce themselves and to talk to the family mostly for data gathering. And then at some point I would come in and talk to the family. And we try to use a very gentle approach. You know, we don't like to the stereotype of the surgeon who kind of comes in and takes charge. I mean, we're there to try to help and to provide a service. We try to involve the families, and the patient as well, in the decision-making process so that, you know, I'm fond of saying that we make the recommendations, but the families and the patient actually make the decisions. And so we try to talk very generically about surgery in general so that they know what to expect, because I think that takes a lot of the fear out of the whole process.

Susan Peck, MSNAnd Natalie, when would a family meet you?

Natalie Walker, RN: Well, if Dr. Mattei or the surgeon feels an ostomy is indicated, they would either meet myself or one of my partners. And we would go up and introduce ourselves. We would take a look at the child's abdomen. Everybody's body is different. We know we want to shoot for the right lower quadrant, but we look at the shape of the abdomen, what type of clothing, where the child would think the ostomy is easy for self-care, and take a look at that. And then we would preoperatively mark the site of best location for the ostomy.

Susan Peck, MSN: So Dr. Mattei, how do you determine what type of surgery each individual patient needs?

Peter Mattei, MD: Well, it really depends a lot on the pattern of the disease. For example, in Crohn's disease, we would address the particular location of the bowel that's involved. In ulcerative colitis, it's a little more standardized because the operation involves removal of the colon and the rectum. And the operation for ulcerative colitis is also conducted in three parts. The first part is removal of the colon. And that's the part that can usually be done laparoscopically with a great deal of benefit to the patient. The second part is the reconstruction of the rectum using a part of the small intestine, and that's commonly referred to as a J-pouch procedure. And then the third portion is the ileostomy. And patients do need an ostomy temporarily for this operation until the newly formed rectum is healed. And so that can be — sometimes all three parts can be done in one stage. More often it's done in two stages, where the second stage is actually closure of the ostomy. Or in rare cases, for example in emergency situations, we would do it in three — we would do each of those three parts separately and that's called a three-stage operation.

Bob Baldassano, MD: Dr. Mattei, if you do decide to do the three-stage procedure for ulcerative colitis and you do need to have an ostomy, you had mentioned that it was a temporary ostomy, what should the definition of temporary? Is that a day, a week, a month?

Peter Mattei, MD: That's a good point. Typically it's on the order of two to three months. So we would try to do the operation, for example, at the beginning of the summer and close it before school starts again in September. That's a typical example of the timing.

Bob Baldassano, MD: And for kids who do have this, I guess they call it the ileoanal pull-through procedure for people who have ulcerative colitis. And typically as a medical physician I would consider surgery when a person is not responding to the medicines. What's the quality of life like after you have this ileoanal pull-through procedure? Can kids expect to be regular kids?

Peter Mattei, MD: Generally, it's quite good. Our goal is to have patients have a normal lifestyle afterwards where they can go to school, they can go to work, they can play, they can do everything that everyone else does. The pattern of bowel movements is not quite what some might consider normal, but it is usually very acceptable. Typically two to three bowel movements per day, maybe sometimes one at night with good control, and that's also an important part of it.

Bob Baldassano, MD: So the job of the large intestine, that portion of the intestinal tract that you're removing, really my understanding is it helps absorb water. So as long as you drink enough, and again, it might be one of the reasons why the bowel movements aren't as formed is because you're taking that sort of organ out that sort of absorbs water, but it does sound like most people have a pretty good quality of life afterwards.

Peter Mattei, MD: That's true. We tend to consider the colon as an organ of convenience and not a true vital organ, and so that we can get by without one. But there may be some slight modifications, for example, drinking more water, that some people have to accommodate. But in general the lifestyle is quite good and that's always our ultimate goal.

Bob Baldassano, MD: And some of the advantages of the surgery, again, this is individual. You know, each patient you have to look at and say what's best for them. But the advantages that the surgery, I guess, affords the patient is it takes away the risk of colon cancer and it also can give you the opportunity to get off many of the different medical therapies that most of these children are on at the time when we suggest to talk about surgery.

Noelle Bates, RN: And several of the children that I see are the sickest of our sick children. And they've been sick for so long that it's hard for them to remember a time where they truly felt well. And that's the most important benefit to those children who have an ostomy, that it returns them to a state of normal life that they remember before they get sick.

Susan Peck, MSN: So Linda, Noelle mentioned that the nursing staff is excellent at teaching families how to care for their disease and surgical interventions. What else can families expect from the nursing staff when they're an inpatient?

Linda DeSantis, RN: The nursing staff in the Inpatient Unit really serves as a conduit or a liaison between a lot of the other services that we involve. We have psychology services, behavioral health services. Again, there's child life services that are involved. Anything the patient and family really would need, the nurse can serve as that liaison and get in contact with those services for the family.

Susan Peck, MSNAnd they are the people that are available to the family 24 hours a day, is that correct?

Linda DeSantis, RN: Twenty-four hours a day. We also have some nursing assistants that are on the unit and nurse techs that they'll also be involved in the care of those patients as well.

Susan Peck, MSN: And what is the — what type of experience does the nursing staff have? Are they pediatric experts or —?

Linda DeSantis, RN: They're pediatric experts in the care of patients with IBD. They've received extensive training. Some of that training is done actually by other members of the team at different portions throughout the year. They have spent time in some of the other departments, such as the GI Suite where some procedures and things are done. And they also are the people that will help to educate the family as well.

Susan Peck, MSN: So are there any other words of wisdom we need to — we would like to share with families about surgery and hospitalization?

Bob Baldassano, MD: Well, it's scary to hear you have to come into the Hospital. But I think most people would say when once they get into the Hospital and they get to meet everybody on the floor and that we're all really working together as a team, that you make actually a lot of friends. It's not that you look forward to go to the hospital, but most people, when they leave, they feel so much better. And many of the families that, you know, we were saying, "Maybe you need to come into the Hospital to get things better," and at first they're a little bit resistant. After they've been in the Hospital, people are happy that they went in and even sometimes wished they would've gone in a little bit sooner so they could get better faster.

Susan Peck, MSN: Thank you panel for participating in today's episode. This was a very interesting and enlightening discussion on hospitalization and surgery. And thank you to all of you for joining us today for our educational video. Once again, if you have questions that were not addressed during the session, please direct them to your healthcare provider. There are additional resources available to you at the end of this DVD. Thank you again for joining us for this educational program.

Related Centers and Programs: Center for Pediatric Inflammatory Bowel Disease, Division of Gastroenterology, Hepatology and Nutrition