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IBD Resources for Professionals

IBD Resources for Professionals

About IBD

Inflammatory bowel disease (IBD) describes either of two related, but clinically and histologically distinct, diseases.

Crohn’s disease is a chronic inflammatory disorder characterized by inflammation that extends through all layers of the intestinal wall (called transmural inflammation). It can involve any part of the gastrointestinal (GI) tract from mouth to anus. The inflammation can be patchy (classically referred to as “skip lesions”) with transmural inflammation, and can lead to strictures, fistulae, and perianal involvement such as perianal fistulae or skin tags. Under the microscope, biopsies of tissue may show chronic inflammatory changes including inflammation, ulceration, architectural distortion, and clusters of immune cells (called non-caseating granulomas) that form in response to inflammation. 

Ulcerative colitis is a chronic inflammatory bowel disorder characterized by inflammation involving the colon and rectum in a continuous fashion. While strictures can develop with ulcerative colitis, fistulae and perianal involvement are not seen. Histologic findings in ulcerative colitis show chronic inflammatory changes of the mucous membrane (mucosa) and submucosa that line the GI tract. Architectural distortion, mucosal infiltration of inflammatory cells, and crypt abscesses may also be present. 

The prevalence of IBD in the United States has been estimated at nearly 1 in 100 Americans, and the incidence appears to be increasing, particularly in North America and Western Europe. The underlying cause of the disease is unknown, but it is hypothesized to be multi-factorial involving genetics, immune dysregulation, and environmental triggers resulting in a spontaneously relapsing and remitting disease process.

IBD treatment

Therapeutics for the treatment of IBD are expanding rapidly. Pharmaceutical therapies for IBD may include aminosalicylates (also known as 5-ASAs), immunomodulators, corticosteroids, antibiotics, biologics and small molecules. Despite this exciting time of new drug development, only a few therapies are currently approved by the U.S. Food and Drug Administration (FDA) for use in pediatrics. In some situations, off-label use of a particular therapy is necessary.

Nutritional therapy is a treatment option – either as a primary therapy alone or with medication. Collaboration with a pediatric registered dietitian and family involvement is paramount for nutritional therapy to be successful.

When patients with IBD develop complications, or are not responding to medications, surgical treatment is considered to relieve symptoms and improve the patient’s health and growth. If you would like a consultation about proceeding with surgical intervention for a patient with IBD, gastroenterologists and pediatric surgeons from Children’s Hospital of Philadelphia (CHOP) are available to help.

VEO-IBD treatment

Children who present with signs or symptoms of IBD before the age of 6 make up a unique cohort of patients who need specialized evaluation and may need different treatment than older children with IBD. Children with VEO-IBD may have an underlying immune deficiency or immune dysregulation that must be identified to choose the appropriate treatment and avoid complications of the disease. At CHOP, we have built the first and largest multidisciplinary VEO-IBD Program to meet the needs of these patients with integrated immunology, gastroenterology, and nutrition experts who personalize the care for each patient.

IBD & IBS: Symptoms, workup and when to refer to a GI specialist

In this article, GI specialists at CHOP, in collaboration with a CHOP pediatrician, offer advice on:

  • What to look for when assessing patients with diarrhea and abdominal pain,
  • Differentiating IBD from irritable bowel syndrome (IBS),
  • What lab tests to order when the symptoms warrant,
  • When to make a referral to a specialist.

Research

IBD research

The Division of Gastroenterology, Hepatology and Nutrition at CHOP has an active research program that studies the entire IBD disease continuum. The Center for Pediatric IBD has conducted many research projects to better understand IBD, advance current treatments, improve quality of life, develop new therapies, and ultimately to find a cure for IBD.

VEO-IBD research

Children with VEO-IBD may have different genetic backgrounds than other patients with IBD, and therefore, we aim to identify rare and novel genes causative for the disease. Through advances in sequencing technology – including whole genome sequencing and transcriptomics – we are studying the genetic pathways responsible for VEO-IBD. Learn about our CHOP VEO-IBD Genetic Panel.

Our breakthroughs in genetic causes of VEO-IBD have led to the detection of therapeutic targets specific for individuals’ diseases and achieving improved outcomes in their clinical care. In addition, we continue to investigate the microbial and environmental triggers for VEO-IBD and why this disease is rising in young children faster than any other age cohort with IBD. 

Fellowship

The Advanced IBD Fellowship is a one- to two-year specialized training program in IBD and VEO-IBD offering unparalleled clinical depth and rigor, as well as opportunities for cutting-edge translational and basic science research. Our fellowship program is recognized by the Crohn's & Colitis Foundation. Learn more.

Professional eNewsletter

Stay in touch with the Division of Gastroenterology, Hepatology and Nutrition at CHOP. Subscribe to our professional eNewsletter to receive updates on research and educational opportunities, resources for your patients, news about our clinical programs, and more.

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Videos and podcasts

  • A Child's Wish for the Future: Beyond IBD

    Stephanie: I really want to be a singer.

    Child 1: I want to be a professional golfer and stuff.

    Child 2: Go to culinary school, become a chef, and open my own restaurant.

    Robert N. Baldassano, MD: This disease is presenting itself at almost an astronomical rate.

    Child 3: I play piano and flute, and I'm really interested in that. I was thinking about maybe going to Juilliard.

    Aimee E. Christian, PhD: Okay. You know, you have been diagnosed with this disease. This is what we're going to do, and in six months you will be fine. It's not like that.

    Child 4: Maybe I would want to do like animal experiments in space.

    Child 5: I want to go to med school.

    Steven M. Altschuler, MD: We have seen a dramatic rise in the number of patients who require care for that condition.

    Child 6: When I grow up I want to go to a college and be a surgeon.

    Child 7: I actually ... I want to be a gastroenterologist.

    Robert N. Baldassano, MD: It's become the most common chronic disease that we've seen in gastroenterology, and is becoming one of the most common diseases we have seen all of pediatrics.

    Child 8: Just to get through school, get a job, and live a normal, happy life.

    Music: Don't worry mother it'll be alright
    And don't worry sister say your prayers
    and sleep tight.
    And it'll be fine, lover of mine
    It'll be just fine.

    Children Living with IBD

    Robert N. Baldassano, MD: Inflammatory bowel disease is a disease that causes inflammation throughout the intestinal tract. Because of this inflammation, children are unable to eat. They have severe abdominal pain, they have diarrhea. They don't grow.

    Aimee E. Christian, PhD: I think it presents hardships that little kids should never have to deal with.

    Child 1: I was in the hospital once, and they had to put this tube down my nose, and I didn't like it because I could see yellow stuff going into me.

    Child 2: You are getting colonoscopies, sigmoidoscopies. It's awful.

    Child 3: You are constantly worried, you know, where is the bathroom, is there a bathroom?

    Child 2: You are getting cramps, and you feel just awful. You feel like you'd rather die than go through all that pain.

    Child 4: I didn't get to, like, be social and be a kid. I felt like I didn't get to be a kid for two years of my life.

    Aimee E. Christian, PhD: Part of growing up is trying to be normal. And a lot of these children don't always feel normal.

    Child 5: I felt like I was, like, two grades behind and stuff.

    Stephanie: Some other people in my class doesn't have it, and I just want to be normal like them.

    Child 6: And then being on the medications, and having your appearance change as a girl and I think, I mean, as a guy, too, was really hard.

    Child 7: The really rude kids, they say I looked like Gary Coleman, or something like that.

    Aimee E. Christian, PhD: It would be even difficult to watch TV. Every other commercial is about food.

    Child 8: Sometimes it's hard not eating, but, like, you still get fed, as they say, but you are still a little hungry when the commercials come on and stuff.

    A Team of IBD Experts To Treats Your Child's Disease

    Narrator: For children with Crohn's Disease and colitis, there is hope. The Children's Hospital of Philadelphia is leading the country, the world, and the search for treatments and a cure.

    Doctor 1: She actually went for an acute bleed and had a section done.

    Doctor 2: She was diagnosed with Crohn's Disease.

    Robert N. Baldassano, MD: Continuous drainage?

    Maria R. Mascarenhas, MD: When you are part of the IBD Center, you just don't get one physician's knowledge and expertise. You get the collective knowledge and expertise of the center.

    Steven M. Altschuler, MD: To really provide state of the art care and to be able to care for patients that really can't be cared for at other places.

    Maria R. Mascarenhas, MD: By having a psychologist, by having a dedicated nutritionist. By having a social worker. By having a research coordinator. You need every single member of the team, and that's what we hope to achieve with the IBD Center.

    Steroidal Treatment of IBD and Side Effects on Children

    Narrator: But current treatments are far from perfect.

    Robert N. Baldassano, MD: To this point, the therapy for Inflammatory Bowel Disease has been mostly Prednisone or steroid therapy. That's actually been the therapy that's been used in many different autoimmune-type diseases like Rheumatoid Arthritis, Lupus, Multiple Sclerosis when it really is telling us that we don't understand the diseases that well if every disease gets treated with the same medicine.

    Aimee E. Christian, PhD: As great as steroids can be in terms of keeping a kid in remission, it's certainly not something that you would want to stay on for a long period of time. There are so many side effects.

    Robert N. Baldassano, MD: We unfortunately have a good number of children who have had vertebral collapse, where the spinal column has collapsed, and they end up being wheelchair bound. Also, other problems, it could cause high blood pressure. For the teenagers, it could cause acne. It could cause excessive weight gain. And it also changes personality.

    Breakthrough Research and New Treatments for IBD at CHOP

    Narrator: The race is on to bring new therapies from bench to bedside. At the heart of everything is research.

    Steven M. Altschuler, MD: I would say over the last 3 to 5 years, there has been an explosion of new therapies and diagnostic tools available for the care of patients with Inflammatory Bowel Disease.

    Robert N. Baldassano, MD: At this time here at Children's, we are the principal investigator for the majority of all pediatric trials that are going on in Inflammatory Bowel Disease in the world.

    Aimee E. Christian, PhD: We have one industry sponsor trial looking at an experimental new drug.

    Child: The bottom of my feet were hurting on Saturday.

    Robert N. Baldassano, MD: OK. OK. We will need to make that better.

    Aimee E. Christian, PhD: We have one patient enrolled in that study right now, and she's actually doing amazing. She had been on high doses of steroids for 8 years, and now she's been weaned to less than 10 milligrams a day.

    Child: It's a PIC line, which is a Central Line that is inserted through here, goes up my arm, close to my heart, in a major artery to my heart.

    Support for Families of Children with IBD

    Narrator: New drug therapies are promising, but equally important is the Center's focus in treating the whole child.

    Robert N. Baldassano, MD: It's very important that we look at the psychological side of things. We need to teach the children how to cope with the problems that they have. Even maybe more important than that, we need to teach the parents how to cope with the disease.

    Parent 1: When Stephanie was diagnosed, it really tore me up. Mainly because I knew all the pain that I went through, and I didn't want to see my daughter go through all of that.

    Stephanie: Some people you can't talk to about, but I know that my dad had someone he knew I could talk to about it.

    Parent 1: I know it hurts her a lot. But then she uses me as a source of information that I help her along with it.

    Stephanie: I just smile and try to hide it in, but I think he knows that I'm trying to hide it in, and I think that it upsets him more.

    Parent 1: I feel like I'm selfish because I want her, but I want her perfect.

    Hope for the Future

    Maria R. Mascarenhas, MD: Parents looking at this totally uncharted future, they often say, "Well how soon is my kid going to get better?" 

    Robert N. Baldassano, MD: We are advancing the field of knowledge about this disease and when these parents go to bed at night, they could have hope and they can feel that someday there will be a cure. 

    Music: I've heard you anguish I've heard your hearts cry out. We are tired, we are weary, but we aren't worn out. Set down your chains, until only faith remains. Set down your chains

    Steven M. Altschuler, MD: There is really a sense at this institution that nothing is impossible. 

    Robert N. Baldassano, MD: The thing that is really so exciting is now for the first time in medicine we really understand the immune system. And with that new understanding of the immune system there are therapies being that are being developed that target particular abnormalities in the immune system. So that we can give a therapy that would work for an individual. 

    Child 3: I want to live while I'm well. I don't want to be like always worried if I'm going to get sick again, am I going to get sick again, am I going to get sick again. 

    Child 6: When they raise money it's easier to find a cure. 

    Steven M. Altschuler, MD: That will allow the center to really reach a level of national prominence. 

    Parent 1: My hope would be that there's just a cure for the disease and that she's able to live a normal life. 

    Steven M. Altschuler, MD: When you deal with children, especially when you deal with a child who’s ill, I think it does something to you that makes you work with a different mindset and kind of at a different pace. 

    Robert N. Baldassano, MD: I would really like the cure to be yesterday. And I feel like I'm in a race to try to get the cure as quickly as I can. There's children that are suffering now. There's children that haven't even been diagnosed with the disease yet that will shortly. So every day matters. 

    Child 5: I really love life and that's what this disease has given me is that every day when I wake up I'm so happy that I'm starting the day healthy. 

    Robert N. Baldassano, MD: Pediatrics I think you could have the greatest rewards but also maybe sometimes you have the greatest disappointments. And I guess people have to decide do they want that type of life. And I do believe the people here at Children's Hospital of Philadelphia who care for probably the sickest children in our society that everybody has taken on that mission. And that's what makes this hospital different than other hospitals and why it makes this hospital really a privilege to work at.

Transcript Transcript

Pediatric Inflammatory Bowel Disease Therapy
At the end of this session, learners will be able to explore case studies and research that support various types of therapies and medication for pediatric inflammatory bowel disease.

Pediatric Inflammatory Bowel Disease Etiology and Diagnostics 
At the end of this session, learners will be able to review the current incidence of pediatric IBD, explore the complex etiology of IBD, and differentiate VEO-IBD. Learners will also discuss clinical presentation of pediatric Crohn’s disease, ulcerative colitis, and inflammatory bowel disease unspecified (IBD-U).

8th Annual IBD and VEO-IBD Virtual Symposium 
This one-day virtual course provides a comprehensive overview of the genomic, immunologic and microbiome discoveries in VEO-IBD and pediatric IBD, the latest developments in research and clinical care for patients with pediatric IBD or VEO-IBD, and an in-depth look at today’s cutting-edge diagnostic tools and therapeutics.

Bowel Sounds: The Pediatric GI Podcast
In this episode of Bowel Sounds, hosts Drs. Temara Hajjat and Peter Lu talk to Judith R. Kelsen, MD, Program Director of CHOP’s Very Early Onset Inflammatory Bowel Disease Program, about the presentation, evaluation and management of children with VEO-IBD. 

IBD Screening in Primary Care
 In this podcast, CHOP pediatric gastroenterologist Betsy Maxwell, MD, MS, talks about the theories as to why IBD is on the rise in children, including an overlap between genetic factors, the immune system, the microbiome, and environmental triggers. 

Nutrition, Microbiome and the Bowel: A Podcast
CHOP pediatric gastroenterologist Lindsey G. Albenberg, DO, offers high-quality dietary information, a look at how COVID-19 has affected people with bowel disorders, and other helpful take-home pointers.

Websites

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