Dr. Lichtenstein: With Crohn’s disease, we have different distributions. The most common [area] is in the cecum, the large intestine and the ileum; ileocolon, the ileum meaning the small bowel, the colon meaning the colon. Less commonly, [Crohn’s] is just in the colon and very rarely in the upper intestinal tract.

The symptoms are going to differ a little, but diarrhea is not uncommon with Crohn’s disease. Pain is more common with Crohn's than ulcerative colitis. And bleeding is less common unless the colon is inflamed a lot. The large bowel is inflamed with Crohn's, loss of appetite and weight. Fever is [sometimes] the only sign in initial presentation with Crohn's.

And in a child, it's very important to [note] stunted growth. They can be growing at a normal rate, and then all of a sudden over a year the pediatrician may say they've fallen off the growth curve. That's a very important hint that there may be symptoms coming about that will be more significant, or this may represent Crohn's. So, again, [that is] something to think of up front.

You may see different things endoscopically - different forms of ulcers. You may see what's called cobblestoning. If you think of a street that has cobblestoning in where there [are] little distinct areas like islands of things sticking up, that is what you see with cobblestoning because it's ulcerated around that area, and it sticks up in the relatively normal area. And then, there could be a stricture where the opening is [too] narrow to allow things to go through, [which] can lead to what we call an obstruction.

With Crohn's, we get similar findings. The cancer risk is there [as is] the formation of a fistula. When the bowel is inflamed and it goes up against another organ - whether it's another loop of bowel, whether it's the skin, the bladder, vagina, the uterus, elsewhere - it can lead to tunneling through of the inflammation to that adjacent, to that organ that is next to there [called a fistula]. So if it's in the skin and it's in the rectal area, you can get fistulas coming out of the rectal area on the skin with stool coming out. If it's on the abdominal wall, you can get the same thing. If it's into another adjacent, in other words a loop of bowel, that is next to that area, then you get virtually no symptoms at all, but what you get is a finding on X-ray of a fistula.

Perforation can occur. This is uncommon. Less than 1 percent of people will have this coming about acutely. And stricture is more common with Crohn's. So if someone is thought to have ulcerative colitis and they come in with a stricture and there is not anything such as a growth there, we say maybe they really had Crohn's to start with, and they fall in that indeterminate group.

So the perianal problems - peri means around, anal means in the anus area - can be several fold. We talked about the fistula, the communication with the intestine to the skin, and it leaks stool or even pus at times. There can be a skin tag, and that's just a tag of skin that sticks out and [can] be annoying. And you want to talk to your gastroenterologist about that. Going to a surgeon perhaps is not the best of things to do because that can be complicated with other things, and treatment with medications is usually what we do directly.

A fissure is a tear in the skin in the area in the anus, and it can be exquisitely painful in people that normally have fissures. In Crohn's, they may not be painful and just be present.

And then an abscess: That's when you get burrowing through of a fistula, but it forms a pocket of pus and abscess. And that can be painful and associated with a fever and an elevation in the white blood cell count, [which is] a sign of infection.

So this is a long list of things that we look at when we try to make a diagnosis of ulcerative colitis or Crohn's. Is there deeper tissue? [Medical editor's note: In Crohn’s disease, the inflammation is through the entire wall of the bowel. While in ulcerative colitis, it is confined to the superficial innermost layer.] Is there a microscopic finding called a granuloma? And this is a finding under a microscope that is found in Crohn's.

Are there lesions that skip? In other words, is it normal in one area, abnormal in another and normal in another area and then abnormal again so you have an intervening - in other words a space between the two normal areas? And that's more with Crohn's than ulcerative colitis.

Oral and perianal disease: Ulcers in the mouth you can get with Crohn's more commonly than ulcerative colitis.

So let's talk about the extraintestinal manifestations: the skin, the eye, the joints, the bones, the kidney, the liver and the gallbladder.

Skin lesions, pyoderma gangrenosum: This is an ulcer on the skin. It leaves a scar when it heals. It's associated with ulcerative colitis and also with Crohn's. Erythema nodosum [are] painful, red, tender nodules, they stick up a little, they're warm to [the] touch. They go away. They don't cause any scarring whatsoever. Twenty percent of people have them occur. Eighty percent of the time they never recur.

Dr. Lichtenstein: Osteoporosis: The bones in the spine and elsewhere in your body, if you have Crohn's or ulcerative colitis, can be more susceptible, more likely to break. You can have a possibility in the spine, and that can lead to the spine getting shorter. So people can lose height as they age and have pain when it crushes, one of the vertebrae gets collapsed and impinge, in other words irritate a nerve, impinge on a nerve or irritate a nerve.

The steroids are a risk factor for [osteoporosis], so we try to use some of the steroids that have less side effects. Entocort [budesonide] is one. Smoking makes [osteoporosis] a higher risk. Crohn's is more prone [to it] than ulcerative colitis. Women are more prone than men, especially if they're [of] shorter stature [and] there's a family history of having osteoporosis and they're postmenopausal, because the hormones are not going to function, the estrogens to keep the bones as strong as they should be [are decreased after menopause].

Dr. Lichtenstein: [So what do you do about osteoporosis]? You go to your physician and say you want to get a DEXA scan or a heel scan. The bone density [scan] is what it's called. You control the active disease. You do exercise. Obviously, get the correct supervision from your physician, don't just go out and start running marathons. Supplement calcium and vitamin D, especially in Crohn’s disease or if you're using steroids you need to think of this.

And biosphosphonates - Actonel [risedronate], Fosamax [alendronate] - are terrific agents that are not contraindicated. In other words, they can and they should be used in people that have osteoporosis. And in people that have a little less than osteoporosis, osteopenia, if you're going to be on medicines that may cause you to have a likelihood in the future of losing bone, consider using these directly.

When we treat inflammatory bowel disease, we don't just treat a disease, we treat a person. We look at the potential for surgery. We obviously think emotional support is critical. Medications are very important because they can help treat the disease and get it in remission, so you have no signs or symptoms from that directly. And nutrition is very important especially in children because without proper nutrition, they're not going to grow to the height they should be.

So once we establish a diagnosis, we do many different things. Address the psychological and social issues. Look for cancer, precancerous lesions. Findings of nutritional problems are important - don't just identify them but treat them. Keep someone from having active symptoms. Avoid side effects from treatments. Treat complications of the disease. If there [are] skin problems, then treat the skin problems. Treat the inflammation. And most of all, get rid of the symptom and try to have people go back to having a normal quality of life - not just an improved but a normal quality if we can.

Prior to the diagnosis, quick access to a gastroenterologist is important. The average time a person may go before diagnosis in Crohn's may be up to eight years. And I'm sure people here have had longer, some have been shorter. It all depends on the ability of the physician who's treating you and you as an individual consumer of physicians to know, is this something potential?

And luckily, the Web has educated many people. Thoughtful explanation of the disease with an opportunity for discussion is absolutely critical. And there are many different ways that can be done - not only with the physician but with the nursing staff. The national organizations, there [are] books that are terrific, the Crohn's [&] Colitis Foundation is a wonderful resource.

Long-term follow-up, not only with the primary care physician, but your gastroenterologist should be available, and you should make repeated follow-ups directly.

Quality of life: If you're not having a good quality of life, you need to sit down and get out the paper and say, “Let's discuss what we can do to make me better.”

Acknowledge the problem. Sometimes there's no good solution, but that's important to know and to know why.

Get second opinions. If you're not happy with your first, get a second, get a third [opinion]. If a physician doesn't want you to get a second opinion, then you have to question that physician directly and ask, “What is the reason you don't want me to get a second opinion?” And oftentimes, I tell a patient to leave that physician if they say that. Because you should be having the care that you're appropriately going to get, and you should feel very comfortable with that if there's a question in diagnosis or otherwise.

And maintain your dignity. Don't let them tell you this is the way you have to live, forget about it. That's wrong. It may be correct, but sometimes you need to go elsewhere.

Hospital management: Get to know the medical doctor treating you. Write down their name, ask them for a card when they come in and [ask], “How do I reach you if I have questions?” Your nursing staff, ask them who they are, what function. If you're in a teaching hospital, ask all the doctors involved with you, an academic medical center, [those] who are involved with you.

Refer to a specialist center. If you're not getting answers locally, go to a regional center or a national center. Communicate with everyone directly. And self-management in certain levels is important. You should have control of your disease. And if there are questions, consult your physician directly.

Medical surgical therapies: Review the choices. And dietitians and social workers are important as well.

Dr. Lichtenstein: The 5-ASA or the mesalamine agents: Asacol, Azulfidine otherwise known as sulfasalazine; Colazal, otherwise known as balsalazide; Dipentum otherwise known as olsalazine; Pentasa, Rowasa enemas, and Canasa suppositories.

Then we have antibiotics: Ciprofloxacin or Cipro. Flagyl or metronidazole. And not included on here is rifaximin or Xifaxan.

Steroids: ACTH, Medrol or methylprednisolone, prednisone, cort enemas, which is cortisone enemas. Cortifoam is cortisone in the form of foam.

Immunologic agents, which suppress the immune system: They lower the body's white cells attacking the bowel. Imuran, otherwise known as azathioprine; Azasan is a brand name of azathioprine that is manufactured by Salix; Purinethol or 6-mercaptopurine. These are all the same general agents - azathioprine, 6-MP is related, it's off by a molecule or so. Neoral is cyclosporin, methotrexate [is another immunologic drug].

And the only biologic we have is Remicade or infliximab, but there are at least 85 different trials ongoing at this point in time in Crohn's and ulcerative colitis, many of which are looking at biologic agents. And I can talk more directly about this.

Dr. Lichtenstein: The mesalamine [5-ASA] agents directly, we have them to get people so they have no active symptoms from ulcerative colitis or Crohn's, and they keep people from having future flares of inflammation. They maintain remission either after medically treated disease in ulcerative colitis or even after surgery in Crohn's.

The benefits are they're well-tolerated. They've been around for years. We've used them effectively. [They have] few side effects. They're relatively inexpensive. They can be given not only by mouth but topically, in other words, in the rectal form as a suppository or enema so they can combat inflammation when it's very low down. And they're extremely effective for doing so. And they're safe during pregnancy as well, at all ages, even in children. Rarely, there are allergies. Rarely, they are not helpful when people have more severe disease. And if someone has had steroids and has had Crohn's, they don't do as much benefit as compared to if you've had steroids and ulcerative colitis.

The relief sites are varied on the agent. In cases high up in the stomach, 50 percent is delivered to the small intestine. So this has been used more so for Crohn's initially. And Asacol [mesalamine] is also used for Crohn's, but it's delivered more lowly down in the ileum portion in the ileocecal area.

Azulfidine or sulfasalazine is delivered to the colon exclusively, and then Rowasa [mesalamine] and Canasa [mesalamine] are delivered to the large intestine. The Canasa's suppositories and the Rowasa in the form of an enema are delivered to the lower bowel through the enema.

If we look at the rationale for topical, in other words, the enemas and the suppository, they treat the inflammation directly, and they're an excellent choice for ulceration limited to the colon and the rectum, ulcerative proctitis. So [this is] the best choice that we have when it comes to such.

Dr. Lichtenstein: The steroids that we have are severalfold: prednisone, hydrocortisone, budesonide or Entocort, methylprednisolone, Decadron, cortisone enemas or Cort enemas, Cortifoam, ACTH, they're given by a pill, intravenously or by an enema. They are very effective in ulcerative colitis and Crohn's, but they have side effects. And it's the steroid side effects we try to avoid from using these long term if we can. And they don't keep people from having future flares of inflammation. They don't maintain remission as we say. They are a quick fix. They're inexpensive. They can be given either orally or rectally in the form of suppositories or enemas.

But the risks that we have are severalfold, and they're numerous. You get retention of fluid. Fluid builds up in your face or in your body, and you can get fluid building up and being cosmetically unappealing to people. High blood pressure, diabetes, thinning of the bones acne, cataracts - cataracts are where you get problems with the eyes, the lens of the eyes so you can't see as well. Depression and retardation of growth: So [with] children, in particular, this is important. Adults don't grow anymore once they're adults, but [in] children it's a big issue.

Dr. Lichtenstein: Antibiotics: They treat mild symptoms of Crohn’s. They're [for] active disease when the colon is involved. And perianal, fistula and abscess: These are effective for treatment of such and often represent the first line of treatment, the first agents we use, the first thing. Cipro [ciprofloxacin], Flagyl [metronidazole] have been used a lot. They can be given intravenously to people with severe colitis or who have an abscess.

The good thing is they're effective. They work for fistulas for perianal Crohn's. Anywhere from 20 to 40 percent of people who have Crohn's, over a lifetime, will get fistulas.

And there's now some very good evidence that shows it can lessen the likelihood of having a recurrence of disease after someone has had Crohn's operated on. But this is preliminary. It's very early information. It's only about a year out that it's been looked at to show benefit.

They don't work very well in ulcerative colitis. Flagyl has problems with damaging the nerves. You can get burning in the fingers and toes. You can goat a coated tongue, and it looks dark. That does go away after you stop medication. Or you can get a yeast infection, an oral infection, a vaginal yeast infection or elsewhere.

Cipro has the same thing, but with tendons you have to be concerned. You can get tendonitis, inflammation of the tendon. And rarely, you can get tendon rupture, the Achilles tendon or tendons elsewhere.

Dr. Lichtenstein: Immune modulators: the azathioprine, the Imuran, the Azasan and Purinethol [mercaptopurine]. They keep people from getting symptoms in the future. These work as - opposed to the steroids, which don't keep people from having disease stay without recurring of symptoms - [immune modulators] do. They work effectively. They don't let people have the symptoms come back. They don't work for everyone.

And they're also good for people that can't get off steroids. It helps people who are steroid-dependent come off the steroids effectively. But you need to monitor [with] blood tests. The white cell counts, the platelets, the hemoglobin can all be lowered. And you have to get what's called a complete blood count and also sometimes liver tests. They spare the steroids. They're good for maintenance. They're relatively inexpensive, but you have to be careful with the blood counts, and you have to monitor these.

Pancreatitis can come about in people that have 6-mercaptopurine or Azasan or the Imuran as well. So you have to be careful with that.

So the myths [about immune modulators]: [One is that] they're dangerous drugs that cause cancer. They're not dangerous drugs. They are very safe. They've been around for 40 years. If someone doesn't know how to guide you through using them, they can be dangerous. Causing cancer has not been shown. And they should be used indefinitely in people that have disease that is under control with these. If they don't work after three to six months, they will not work, and that's a myth because it sometimes is an inadequate dose. People don't use adequate doses [that are] high enough.

And then during pregnancy, we may or may not stop [using them]. It depends on the individual who has a comfort level with using these. I continue these during pregnancy with people routinely, and there are some people who say perhaps this is something that needs to be discussed, and we let the patient make the decision entirely when it comes to such.

So the facts are [immune modulators] don't cause cancer. We use them for more than three years, and the dose needs to be adjusted if they don't work initially, and during pregnancy you have to monitor closely.

Cyclosporine: This is something that is used effectively in people that have severe ulcerative colitis that have historically not responded to steroids. It is not as effective in Crohn’s disease as it is in ulcerative colitis, and it works very rapidly. Often within one or two days, you can see some response. And within five days if they don't work, overall the likelihood is they're not going to work.

You have to monitor the kidneys. Infections can be higher. Seizures if you have low cholesterol in particular, less than 120, this has been a problem. Blood pressure could be abnormal. And there's a suggestion but not a proven cause and effect with some tumors, so it's something to be careful with.

Methotrexate is an agent that is also used to treat Crohn's. It has not been as effective in ulcerative colitis. Rheumatoid arthritis - it has been the main treatment for many years. It can reduce steroids in people that are on steroids. It's given as an injection either into the muscle or into the skin once a week in Crohn's. And the common side effects are nausea, flulike symptoms, so you may need to take a medicine to get rid of the nauseousness because it works very effectively to do so.

Rare side effects are liver disease, lung inflammation and pneumonia. It cannot be used during pregnancy, and I can't state this enough. This is a medicine that cannot be used during pregnancy because it can lead to an abortion.

Dr. Lichtenstein: Remicade is the latest [medication] on the block. [In] 1998, it was released by the Food and Drug Administration [FDA], and it's given intravenously. It blocks the immune system, and it rapidly gets rid of symptoms related to Crohn's. There will be some information coming about shortly about ulcerative colitis. And I'm not at liberty to release specifics, just to say it is positive, highly positive. So very shortly, that will be released to the public [pending FDA approval]. It can be given over time over years to maintain remission.

The benefit is it helps people with Crohn's not only get into remission, get rid of all their symptoms that are causing the disease, but it keeps them in remission. It stops them from flaring [and] having active symptoms in the future. It gets rid of fistulas and melts fistulas away such that they can heal in a good proportion of individuals. It gets rid of steroids when you're on steroids as well, and it's effective even when things like Imuran [azathioprine], methotrexate fail directly.

You can have side effects, a reaction to the infusion. You can get a rash, muscle aches, joint aches, shortness of breath or even lowering of the blood pressure. You can get antibodies. This is a protein that is in part made from mouse [protein], so your body is not accustomed to this. But you can get these side effects directly [developing antibodies], which allow the body's immune system to go against this [the Remicade] and stop the Remicade from working. So sometimes, we use this along with another agent like methotrexate or Imuran at the same time [because it reduces the chances of developing antibodies against Remicade].

If you've had tuberculosis and it's been present in your body and your body fought it off effectively, it [Remicade] can make it so it's reactivated, so you get checked for tuberculosis exposure in the past. And if you've had it, you might get a medicine to stop you from having that come about.

It is expensive, but it is cost-effective. It is effective to treat people that have disease. It lessens time in hospital. It lessens surgeries, and it is a very good medicine that has been added to the group of medicines we have to treat Crohn's.

It’s given intravenously. Infusion reactions can occur, so you need to be monitored by someone who's very experienced. In our institution, [it is monitored] by a doctor who's there at the all the time the infusion is going in. Other places may have a nurse directly. And if you have a reaction directly related to this, you stop the medicine in certain circumstances. About 3 percent of all people who have reactions need to have it stopped. So 97 percent of people go on and will be able to do it.

Dr. Lichtenstein: So the medicines in pregnancy that we have: We have several. Mesalamine, the Asacol, the Pentasa, the Colazal, the sulfasalazine, the Rowasa, the Canasa, these are safe in pregnancy, and we don't stop these. The steroids have a low risk of cleft pallet, and cleft lip as well has been reported with steroids. These are things that may come about. They're cosmetic, and they can be corrected.

Most antibiotics are safe.

Imuran, 6-MP we believe are safe, but as I mention there's some who may not believe so. And Remicade or infliximab we don't advocate giving to everyone during pregnancy, but it's the same class of medicine as Asacol [mesalamine], Pentasa [mesalamine], it's a class B medicine. And we've published some information on 146 pregnancies to show that it is safe during pregnancy, [and there is not a] higher risk of birth defects. But, again, this is not thousands and thousands of people, so we have to look at this in the future.

Methotrexate is the one you have to avoid during pregnancy.

Fertility is normal if your disease is under control. It's reduced when the disease is active, and the pregnancy outcomes are normal in people that have given birth that have colitis. Low birth weight, prematurity, [can occur] if there's active disease. There's not a higher risk of increased birth defects, and that's a fallacy that's out there that's perceived to be the case. The risk of active disease is present after you deliver, so stay on the medicine, don't stop it after you deliver.

Dr. Lichtenstein: Malnutrition is something that can occur. You have several reasons to get there. Some people have a fear of eating because they get pain. They get overzealous restriction. They don't eat foods because they're worried it can cause symptoms that come about, or they've been told the wrong things by people and end up having an avoidance that is not truly needed. They may not absorb things if they have active inflammation in the small intestine, for example. They may have a need for higher calorie requirements because of active disease. So professional nutritional assessment is reasonable to do if you have any questions and your doctor is not savvy in that area or you feel that you need that. It's very reasonable in everyone.

Tailor the diet to the individual, not as a general thing. [The idea that] all people with IBD shouldn't eat this or not, that's wrong. A multivitamin on a daily basis is what I recommend to everyone with ulcerative colitis or Crohn's.

Dr. Lichtenstein: Surgery, colectomy, removal of the colon is curative in ulcerative colitis. And colectomy and an ileostomy is one of the possibilities where you take out the entire colon. The small bowel comes up to the abdomen, and there's an outside appliance, a plastic appliance here. Or you can have an internal pouch [called a J-pouch].

I'll throw out a Web page as well for people. We've created a Web site, www.j-pouch.org. We get about 800,000 hits a month on that. That's something we created back in 1997 in our institution, and have left that out there. Generous support from the pharmaceuticals has enabled us to continue that.

Surgery does not cure Crohn’s disease on the other hand. The disease will recur, but it may be 20 years down the line that you get recurrence and less after an ostomy. So if you do a removal of the entire colon and you have an ostomy, then that is a less likelihood.

Resection of the inflamed segment, that's the portion [that’s actively inflamed], to treat the complications of the disease [stricture, fistula, fissures], [and disease] that doesn't respond to medication are the current things we recommend surgery for.

So when do you think of surgery? The issue is that when you have active disease that can't be controlled with the current medications you have or you have a severe attack and you get what's called a toxic megacolon, a big dilated bowel comes about, you get fever, severe pain, which has a risk of perhaps bursting in your belly. And if that occurs, that's a significant thing, that's an important thing.

If you have complications that don't respond to the medications or if you have side effects from medicines that you can't take the appropriate medicine to keep you symptom-free or if you get a precancerous state, dysplasia or a cancer then you have to think of surgery in ulcerative colitis.

In Crohn’s disease if you get a stricture, a narrowing, that is not just inflammation, but it's scar tissue then that can't be treated, so you get blockage of the bowel or symptoms from such. If you get a fistula that can't be treated with medicines or even in an effort to help a fistula heal, we'll do surgery with the surgeon going in and cleaning out the area to allow it [to drain] easier.

Perianal abscess, toxic megacolon we spoke about or local unresponsive disease, when the disease is localized, not the entire bowel in Crohn's but a small area. And it doesn't respond to the medications used to treat it.

Dr. Lichtenstein: Cancer risk is 20 times higher compared to the general population, not if you just have inflammation of the rectum though. That's the same risk as the general population. It occurs at a lower age. And in Crohn's and ulcerative colitis, the risk is the same if you have the same amount of bowel inflamed. So it's thought to be the inflammation and how long the disease is present. If someone has liver disease called primary sclerosing cholangitis, then the risk is higher. And once that diagnosis is made, they should undergo a yearly colonoscopy if they have that to look for precancerous change. And the risk could be related to the severeness of the activity of the disease.

How do you prevent colon cancer? The 5-ASA agents have been shown to lessen the risk for colon cancer, so Asacol, Pentasa, balsalazide, Colazal, all of these [can help]. If you stay on these, you can lessen your risk by 50 to 75 percent based upon large series, now nine different series that have looked at this.

Regular follow-up and surveillance colonoscopies as we talked about [can help], and then every year after 20 years. Take out the colon if you have dysplasia, which is a precursor to cancer. If someone comes to me and says, “I'm not going to do any surveillance,” that's playing Russian roulette. Because you don't know if there's precancerous changes, and the risk could be there directly to developing cancer.