Inflammatory Bowel Disease: Symptoms and Solutions (podcast)

The most common symptoms of inflammatory bowel disease are abdominal pain, diarrhea and rectal bleeding.

Onset is different for every patient. For some people, it just starts full-blown and for others it starts small and mild and they might not even realize what’s going on, but then it gradually progresses.

It is more common among Caucasians and Ashkenazi Jews. We are seeing it increasing in developing countries, as well.

It can affect anyone from babies to the elderly. But the most common folks affected are people in their 20s to 30s. With ulcerative colitis, we also see a second peak in the 60s to 70s. For Crohn’s disease, more women than men get it. For ulcerative colitis we see a relatively similar distribution.

They’re both chronic inflammatory diseases of the GI tract. Crohn’s disease can affect any part of the GI tract, from the mouth all the way down to the anus. But it most commonly affects the colon as well as the end part of the small intestine that’s connected to the colon, called the ileum. Ulcerative colitis is really just limited to the colon.

Crohn’s disease can affect all four layers of the GI tract. It’s a long tube that goes from the mouth down to the anus. Ulcerative colitis is really limited to the innermost lining of the GI tract. I highlight this because it can affect the symptoms that people develop and even the complications that can develop from ongoing inflammation.

There are a lot of triggers. There are a lot of environmental factors. For example, whether or not you were breastfed as an infant. Whether or not you had a lot of infections or antibiotic exposure. Things like physical activity, diet, sleep. All of those are potential environmental risk factors for developing inflammatory bowel disease.

We also know that genetics plays an important role. There are over 200 genes that have been identified as being associated with IBD. None of those are sufficient to cause the disease by themselves, but we do know that they play a role. And then finally the microbiome, the bugs in our gut, those definitely play a role. I think research is trying to figure out how.

If a child was nursed as an infant, then they have about a 30 to 40% lower risk of developing inflammatory bowel disease later on in life.

We recommend a healthy lifestyle. Really, eating a nutrient-dense diet high in fruits, vegetables, fish and fiber. Make sure your vitamin levels are good, that you have adequate vitamin D and zinc, that you’re getting enough sleep, getting enough exercise. Minimize exposure to ibuprofen or naprosyn or other NSAIDs that are associated with an increased risk of developing the disease.

Figuring out what treatment to put a given patient on really depends on what’s going on right now. How active is their disease? How severe is it? What is their chance for developing complications down the road?

We have to look at what’s going on now and maybe what’s also happened in the past. Have they needed a lot of steroids, surgeries, hospitalizations? What is their chance for developing complications in the future? We take all of this information, put it together and then think about the best way to approach it.

For some people who have more mild disease, we can start out with non-immunosuppressive medications, such as anti-inflammatories for the gut. For people who have a much more active disease, maybe they’re hospitalized, maybe they’re a high risk for developing complications. We tend to start out with more of our targeted immunosuppressives that are directly targeting the pathways to treat inflammatory bowel disease.

If they’re on the milder spectrum, particularly for ulcerative colitis, we think about a drug class called mesalamine. These are topical anti-inflammatories for the gut. Patients can take them by mouth or we have various formulations that we can actually give from below, through the rectum.

For more moderate to severe patients, we have other options for therapy. We think about biologics, which are antibody-based drugs. These include medications, such as infliximab, adalimumab. You may have also heard about ustekinumab, which was recently approved as well as vedolizumab. Those are some of the common biologics we use.

We also use oral medications, particularly tofacitinib, which was just approved as well. There are other medications that we use either in combination with these or as solo medications.

For steroids, we do use those a fair amount, but we really try to minimize exposure and give it really when needed. They’re considered more of a bridge to therapy and to really help quiet down symptoms. But they’re not intended for chronic or long-term use.

Surgical options are a little bit different if you have Crohn’s disease or if you have ulcerative colitis.

With ulcerative colitis, if patients have significant, severe disease where they’re not responding to therapy or they develop precancerous lesions of the colon that can’t be removed, then we do think about having their colons removed. We think about that as being curative. A patient can have their colon removed and that results in an altered anatomy. They may end up with an ostomy, which is basically a connection of their gut to their skin, and then they wear a bag. Or they might end up with something called a J-pouch. A J-pouch is where they take out the colon and then take the small intestine, move it down and connect it to the anus and create a J configuration with that small intestine to create a reservoir for stool.

For Crohn’s disease, the surgeries are a little bit different. In Crohn’s disease, unfortunately surgery is not curative. We do know that even if patients have surgery for Crohn’s that it almost inevitably recurs, either at the connection or even just above that connection. Even though it can certainly help with a lot of the complications, it doesn’t cure. Those surgeries are really centered around what’s going on. If a patient develops a narrowing or a fistula, which is a connection from one part of the bowel to either another part of the bowel or another organ, or the skin, it may require surgery.

If you don’t treat inflammatory bowel disease, then most people do develop, or are at risk for developing complications. In Crohn’s, for example, they’re at risk for developing those narrowings, those fixed scars that are really difficult to overcome with any treatment. They can develop the fistulas. And what happens is those [problems] end up significantly affecting their quality of life. They often require more aggressive medication. Patients tend to have a poor quality of life because they’re much more symptomatic. It can also potentially be life-threatening, especially when the ongoing untreated disease results in chronic steroid use, or infection or other complications.

It does. We usually think about the risk of colon cancer going up about eight years after someone has started having symptoms of inflammatory bowel disease. We used to say about 10% at 10 years, 20% at 20 years. More recent estimates suggests that those risks are lower, but certainly higher than in the general population. For that reason, we actually start screening patients with Crohn’s disease and ulcerative colitis earlier and also more frequently.

The most common reason to go into remission would be medications. Only a very small minority of patients ever experience remission without any form of therapy.

The goal is really two-fold. One is something called clinical remission where patients are feeling well. They continue to feel well and they’re not requiring steroids. The other is something called mucosal healing, where when we put a camera in, or we look with imaging, that the amount of inflammation and ulceration in their gut is really gone.

What we do know sometimes is that even when people are feeling fine, they can still have ongoing, smoldering inflammation in the GI tract. So that’s the reason we want to accomplish both, clinical remission as well as mucosal healing.

Whenever patients are having symptoms that are just persisting, they’re not going away, or they’re getting worse, they should see their doctors.

This includes symptoms, such as bleeding from the rectum or seeing blood in your stools, having really severe pain, losing weight, having to get up in the middle of the night to have a bowel movement, having fevers or night sweats. None of those are expected or should be tolerated, and certainly folks should see their doctor.

If these symptoms persist for more than a week, it’s good to get evaluated. Sometimes bugs in the GI tract or certain things you might pick up on a vacation can last for a week. But if you’re not getting better, just go see your doctor. It’s always better to get checked out.

It’s amazing how much has changed over the past 20 years. Twenty years ago, we really just had steroids, thiopurines, methotrexate, and mesalamines. And while they’re effective, they are not as effective for moderate to severe IBD. It’s amazing the number of therapies we have now that have been able to really help patients get their disease under control.

There are risks. Some of those risks are related to the surgical procedure. What normally happens is you have part of your intestine that is pulled out through the skin. The [surgeons] make a tiny little stoma, which is a small opening, and then they put a bag over that. A stoma is a little portion of either the colon or the small intestine that’s brought out to the skin. Attached to the skin is a connection. With any sort of connection, things can get loose, things can get pulled back, things can get infected. So there are risks, but generally people who end up needing what we call ostomies, sometimes wonder why they didn’t do it sooner, especially when they’re dealing with chronic and fairly severe disease activity.

Seeing that population gives me a lot of joy, especially when we are able to help them get pregnant, and stay pregnant, and have healthy babies. So that’s always a privilege on our end.

What I like to tell women is that the best way to increase your chances of conception as well as have a good pregnancy, a healthy baby, is really to try and get your inflammatory bowel disease under control before you get pregnant. If you can do that, then you’re much more likely to have your IBD stay in control during the pregnancy.

It’s always good to meet with your gastroenterologist just to check for any vitamin deficiencies that you might have before conception, because you wouldn’t want to go into pregnancy with those deficiencies and then have that potentially impact how you do or how the baby does.

The last thing that I would say is pelvic surgery. Having a prior history of surgery in the belly does increase the chance of not being able to conceive. But women are still able to conceive that way or naturally as well as even through IVF. The success rates for in vitro fertilization among women with inflammatory bowel disease are comparable actually to those who don’t have inflammatory bowel disease.

We have done some clinical trials. One of my interests is looking at dietary interventions for inflammatory bowel disease and how we can use diet or other potential triggers of inflammation to reduce the inflammation itself, rather than always focusing on the pathways of inflammation with drugs. We have done clinical trials looking at the efficacy of various diets to help control the disease. We’re looking forward to doing more.

If someone thinks they have IBD or they’ve been diagnosed with IBD, the best thing to do is to establish care with a gastroenterologist who can help manage them, who can help educate them about what this condition is and what it means. We have a lot of local support groups, especially through the Crohn’s and Colitis Foundation. For those patients who might need surgery or have ostomies or might need one, we have excellent colorectal surgeons and ostomy nurses who can help guide them through that. But most importantly just establish care with your physician.