Stomach pain and cramping, mad dashes to the bathroom, recurring diarrhea, weight loss, fever, loss of appetite, fatigue. Those are all classic symptoms of Crohn’s disease.
Even if you're new to this, you know it’s no fun. You probably also know that it’s chronic, meaning it’s something that (at least as far as doctors know right now) you’ll have for the rest of your life.
Hopefully, your medical team has told you that with their help, a good plan, and a dose of determination from you, you can control your Crohn’s.
Still, you probably have some questions. Here’s what the experts have to say.
What is it?
Crohn’s -- named for Burrill B. Crohn, MD, the man who defined it in 1932 -- is an inflammatory disease of the gastrointestinal (GI) tract. It can show up anywhere -- from your mouth through your throat, into your intestines and your colon, and all the way to the other end.
The disease can get worse over time. Some 700,000 people in the U.S. have it. It appears to strike men and women in nearly equal numbers.
Inflammation is how your body normally responds to injury or infection. No one’s quite sure why the body does this when you have Crohn’s. We do know inflammation brings on the symptoms. It can damage the GI tract by causing things like fissures (small tears), fistulas (abnormal passages), and infections. All that swelling can also cause blockages.
It’s important to let your doctor know about all your symptoms.
I should change my diet, right?
It makes sense that what goes into your gut might play a part. In reality, that’s just not clear yet. “I wish we had a better answer to that,” says Jason Harper, MD, a gastroenterologist at the University of Washington Medical Center. “I think, unfortunately, the answer most people seem to get, in my experience, is this kind of brushoff: ‘Eh … it doesn’t matter. Eat what feels good.’ That’s medical speak for, ‘We don’t really know.’ ”
The belief that, for example, eating spicy foods or gluten-heavy foods is bad for those with Crohn’s isn't scientifically proven. That said, Harper says many people with the disease have concluded that certain foods can lead to flare-ups. So, they avoid those foods.
Of course, one person’s avoid-at-all-cost list might be another’s go-to shopping list.
Harper says we don't quite know yet "exactly how diet influences the course of Crohn's disease. But it would be a mistake to say that diet is unrelated."
Eating right is a big part of keeping your body healthy. So, Harper suggests, eat well, listen to your body, and know that there is no one-size-fits-all diet approach.
OK, if it’s not what I’m eating, what’s causing all this inflammation, pain, and diarrhea?
Researchers aren’t exactly sure what triggers your immune system and brings the inflammation that defines Crohn’s. They do say genetics and your environment play a part. If you have a parent or a sibling with Crohn’s, you’re more likely to get the disease yourself.
Also, smokers seem to be more likely to get it, as are those who take non-steroidal anti-inflammatory drugs (NSAIDs). And it may be what you're eating. Those who follow a high-fat diet seem to have higher odds of getting it, too.
How do I keep this under control?
Take your medicines. Stick with them. Talk to your doctor about any side effects so you can work together to adjust meds. Many people with Crohn’s go into remission and can stay in remission by standing pat, says Atilla Ertan, MD, medical director of the Gastroenterology Center of Excellence and Digestive Disease Center at Memorial Hermann Hospital. Because there is no cure for Crohn’s, getting to remission and staying there is the main goal of those with the disease and those treating it.
To get there, your doctors may prescribe:
Immunomodulators: These medicines target your whole immune system. You may take these by mouth, or you may get a shot. Azathioprine (Azasan, Imuran), mercaptopurine (Purinethol, Purixan), and Methotrexate (Trexall) are the best-known examples of these.
Steroids: These also target your immune system. Your doctor would only have you take these for a short time because they can bring some heavy side effects. They aren't intended for long-term use.
Aminosalicylates: You may hear these, mesalamine and sulfasalazine, called "5-ASA" meds. You'd take these by mouth or through your bottom. They can ease inflammation in the lining of the intestines.
Biologics: These drugs target specific parts of your immune system to ease inflammation. You’d get them through an IV or a shot. Examples include:
- Adalimumab (Humira)
- Adalimumab-adbm (Cyltezo), a biosimilar to Humira
- Adalimumab-atto (Amjevita), a biosimilar to Humira
- Certolizumab (Cimzia)
- Infliximab (Remicade)
- Infliximab-abda (Renflexis), a biosimilar to Remicade
- Infliximab-dyyb (Inflectra), a biosimilar to Remicade
- Natalizumab (Tysabri)
- Ustekinumab (Stelara)
- Vedolizumab (Entyvio)
Antibiotics: These can handle any infections that may come up.
They may also suggest over-the-counter remedies, like anti-diarrhea drugs and pain relievers. They normally go with your prescription regimen, not in place of it.
“[People] feel better, and it’s human psychology, I think. They forget the rainy days and they stop the medication,” Ertan says. “That might be one of the worst decisions they can make.”
What about surgery?
In some cases, inflammation can damage your GI tract and can lead to blockages, bleeding, or even worse. So surgery is possible. Some 60% to 75% of those with Crohn’s may require it at some point. But it’s definitely not preferable.
“Surgery should be a last resort. I will do everything possible to save my Crohn’s patients from surgeries,” Ertan says. “Obviously, we have no other choice if there’s obstruction, bleeding, cancer, that type of thing. But surgery is like some kind of revolving door. One surgery leads to another surgery.”
Even if things are going well, I’ll still have bouts now and then, won’t I?
Yes. Even those in remission may have a relapse. It’s important to remember, though, that flare-ups are a part of Crohn’s.
“Having an autoimmune disease, having Crohn’s disease, there are going to be ups and downs,” Harper says. “And some of those ups and downs are not things that people have direct control over.”
I can see how dealing with all of this might get to me. Any advice?
It’s sometimes hard to get through a day when you’re cramping and making frequent trips to the bathroom. Something as simple as eating out can be an ordeal. Staying at home in pain is no vacation, either. It can all make you a little depressed.
“One of the first pieces of advice I would give -- and this may be a little simplistic-sounding off the bat -- is be kind to yourself. Kindness goes a long way,” Harper says.
“One of the challenges of living with a chronic illness like Crohn’s disease is the sense of guilt that I think sometimes people have, about, ‘Why am I not feeling well?’ as though this is something that can just be powered through. Crohn’s disease is going to have a mind of its own sometimes.”
You know what’s also bad? When someone offers up advice, often unsolicited, about your disease -- what you should eat (or not), how you should exercise, what medicines you should be taking, who you should be seeing.
“These kind of things come from a good place, but I don’t think that’s what people need in the moment,” Harper says. “I think what they need is just to be kind to themselves and not layer another sense of, ‘I’m not feeling well, or ‘I’m sick because I’m doing something wrong.’ I think that’s a very easy way to get to a dark place.”
When you’re down, Harper suggests, step back, realize that Crohn’s is like that, and don’t beat yourself up. It can also help a lot to reach out for counseling. And if you think you might be depressed, tell your doctor.
Can I date? Marry? Have sex? Have kids?
These, along with the diet question, are some of the first things people new to Crohn's ask their doctors. The answers: Yes, yes, yes, and yes.
“I have hundreds of [people] that are very happily married and they have healthy kids,” Ertan says. “I explain to them -- and at the beginning they have some hesitation -- about pregnancy. If proper measures are arranged, they should have a normal pregnancy, with no major events.”
How do I tell people?
Well, everybody’s different. You don’t have to tell anyone if you don’t want to. “No one should ever feel under an obligation to discuss their health history if they’re not ready and comfortable in doing so,” Harper says.
And if the people you're telling aren't ready, "It’s going to be like learning a completely new language. So disclosing to people who don’t even know what the condition is may not be very helpful."
So what's the alternative? “I think a good place to start, if people are comfortable in doing so, is to reach out to the broader IBD community,” Harper says.
But online forums or local groups may not be for everybody. “Some people like that, others don’t. The ones that don’t like it often tell me they just hear how miserable everybody is, and they want to have a more positive perspective,” says Hans Herfarth, MD, a professor of medicine at the University of North Carolina and co-director of the UNC Multidisciplinary Center for IBD Research and Treatment.
Still, if talking helps, someone is out there to listen.
What’s the one thing I can do to make sure this doesn't control my life?
“The best thing you can do is to surround yourself with a medical team that you trust, and that you are on the same page with, and that you feel confident in that they are recommending things for you that are thoughtful, that are specific to you and … are up to date [with] the latest recommendations," Harper says. "And that everything that they’re saying to you comes from a place of understanding of who you are.”
Get comfortable with doctors and other medical professionals. "You want a care team. You want a doctor whom you trust, whose nurse you trust," Harper says. "You may have pharmacists. You may have dietitians. You may have a whole team of people who you’re going to be working with. For somebody who’s brand new to this and hasn’t really needed the medical profession very much, this is kind of like going from 0 to 60 overnight."
It can be overwhelming, but Harper says there's one rule you should follow: “Find a team that you’re comfortable with.”