5-ASA’s aren’t approved to treat Crohn’s—So Why are Hundreds of Thousands of Patients on Them?

When I was initially diagnosed with Crohn’s disease in 2005, I went home from the hospital on 22 pills a day. As the weeks passed and the steroid was tapered, that pill count dwindled to six. Six Asacol. For those who don’t know what Asacol is, it’s considered a 5-ASA medication. IMG-2067Chances are, if you have IBD, you’ve either been on or are currently taking this as part of your daily treatment regimen. Out of the approximately 1.6 million Americans who have IBD, more than 250,000 are currently on this type of medication. That may seem all fine and dandy, but did you know 5-ASA’s are not FDA approved for Crohn’s patients?

Yes, you read that correctly. As a Crohn’s patient myself, I spent three years on Asacol and from 2014 until just recently I was on Lialda (mesalamine). After seeing a discussion on Twitter led by Dr. Peter Higgins, M.D., Ph.D., M.Sc., questioning the use of this class of drug for Crohn’s, the topic piqued my interest. Here’s what Dr. Higgins has to say about the subject.

Dr HigginsNH: Given that there’s no evidence that 5-ASA medications are beneficial to Crohn’s patients (and not FDA approved), why are they being prescribed to more than 250,000 patients?

Dr. Higgins: “As best I can tell, this is because of failure of medical education, too many doctors getting their drug information from drug reps, and doctors fearing the risks of getting sued for using effective drugs. It’s uncommon for doctors to get sued for under-treatment of Crohn’s disease, which may need to change for doctors to change their behavior. Some doctors could be using 5-ASA’s as a placebo, and surprisingly, some doctors might not really understand the difference between Crohn’s disease and ulcerative colitis in terms of 5-ASA response.

NH: Is there any additional benefit if a patient takes a 5-ASA med along with their biologic?

Dr. Higgins: “For small bowel Crohn’s, definitely not. Also, a recent study for ulcerative colitis showed no additional benefit for patients on biologics to continue 5-ASAs.”

NH: As someone with Crohn’s disease in my small bowel, I’ve been told in the past by a GI that 5-ASA’s lower my risk of colon cancer, thoughts?

Dr Higgins: “Anything that reduces colon inflammation will reduce the risk of colon cancer in IBD. Generally, patients with milder ulcerative colitis end up on 5-ASA, and therefore have lower risk of colorectal cancer (because of less disease activity, not necessarily the drug). There’s a correlation, but probably not causation. Studies show the most important predictor is control of inflammation, rather than what drug you are on, for preventing colorectal cancer in ulcerative colitis (or Crohn’s colitis).”

NH: As far as the cost for the patient, insurance companies, healthcare system in general—is this more about business/making money than treating the disease?

Dr. Higgins: “For the manufacturers of 5-ASAs, this is about making money in Crohn’s patients (an extra, bonus market with little effort on their part). If pharmaceutical companies wanted to do the right thing, they would be out talking to docs about stopping 5-ASA in Crohn’s and using it appropriately in ulcerative colitis. But the drug companies don’t have an incentive to spend the money to do a campaign to reduce drug use. Technically, it is illegal to market 5-ASA’s for Crohn’s, so drug reps choose to avoid the subject entirely.  I find the health insurance company complicity puzzling. Maybe it’s cheaper than biologics, because many insurance companies go out of their way to block the use of therapies that are not FDA approved.”

NH: If Crohn’s patients are on this medication, what’s your advice for them?

Dr. Higgins: “Talk to your doctor. Ask why you are on a medication that is not approved for Crohn’s disease. Ask about the FDA-approved options that *are* effective for Crohn’s. Ask your doctor how well-controlled your intestinal inflammation is. You can measure disease inflammation the following ways:

  • By CRP (C-reactive protein) or ESR (SED rate) or FCP (fecal calprotectin)
  • By CTE (for patients over 35 years old) or MRE
  • By endoscopy if reachable with a colonoscope
  • By capsule endoscopy if not reachable with a standard scope

If your inflammation is not well controlled, you should be on a more effective medicine to reduce your risk of strictures, obstruction, fistulas, abscesses, perforations, cancer, flares, steroids, hospitalizations, and surgeries.”

 

 

 

Why Caregivers are the MVPs of Chronic Illness

They’re the unsung heroes. They’re the hands that hold us up when we’re to weak to stand on our own. They’re our biggest cheerleaders behind closed doors. They’re our extra set of ears during doctor appointments and hospital stays. They’re the real MVPs in the chronic illness game. I’m talking about caregivers. The people in our lives who decided to stay by our side and stick it through, despite the shortcomings relating to our health. The people who serve as our safe haven and comfort when everything feels like it’s spiraling out of control.

IBD Social CircleOn Thursday, October 10, I had an amazing opportunity to sit alongside my husband and do a Facebook Live for IBD Social Circle. For the first time in our 6+ year relationship, Bobby was able to share his experience as a caregiver. You can watch the video by giving the IBD Social Circle Facebook page a “LIKE”—the video is up on the feed.

During the discussion we talked about navigating the unpredictability of the illness and how we handle the stress and worry as a couple—from when we initially met in 2013, until now—married with two little ones. Bobby was thrown into the caregiver role in serious fashion six months into our long-distance relationship when I had a bowel obstruction while visiting him. IMG_1760

From that point forward—I knew I had met someone with an understanding heart who was up for the challenge of rolling with the punches and taking on everything that IBD brings on emotionally, physically, and mentally to not only the patient, but their loved ones.

While balancing love and IBD, communication is imperative. Be vulnerable. Allow the person closest to you to break down your walls. Don’t hide behind a smile if you don’t mean it. Articulate the pain and the struggle so your caregiver knows when they need to step up and help you.

Feeling guilty for constantly being the one who is taking, rather than giving, is a heavy burden that all chronic illness patients carry. In talking to Bobby though, I’ve learned he doesn’t see the balance of giving and taking in that light. Rather, he believes I give back just as much. Through the years I’ve casually apologized for being “sickly” or a “sick girl”—he always reminds me that despite my disease I’m a healthy person with a GI condition. Having that mindset helped me immensely and shed light into how he sees me through his eyes.

Not everyone is cut out to be a caregiver and that is fine. But, for those of us in the IBD community, being with someone who isn’t empathetic, nurturing, and compassionate, can be a recipe for disaster. 21457882_10101818662837094_5226127969889691497_o

Life gets stressful. Life gets heavy at times. Living with a disease that can strike at any given moment is taxing. Don’t try and be a superhero and take the burden of IBD on yourself. As patients it can be easy to gloss over all that our caregivers do for us on a daily basis, whether flaring or not. The little things are often the grandest gestures. Recognize the effort. Say ‘thank you’ and let your caregiver know how much their constant support means to you.

IBD on the College Campus: The Social Burden

Living with roommates. Having to use public bathrooms. Feeling fatigued and unable to keep up with the energy levels of your peers to study and socialize. While living with IBD while being a college student is difficult in the classroom, many may argue the struggles are even worse outside of academics. Socially, college is a time to explore, learn, and spread your wings. But, when you’re taking on an unpredictable and painful chronic illness, making plans to attend a house party on a Friday night becomes a bit more complicated.

Annie Tremain was diagnosed with Crohn’s disease her senior year of high school, so navigating the disease while starting college was a stressful whirlwind. IMG-1375She was nervous about the potential of being matched up with a roommate who wasn’t a good match.

“I felt so alone. I requested a single dorm room, felt like I was hiding because I didn’t want to use the shared bathrooms when others were around. I was adamantly opposed to a roommate because I didn’t want to have to talk to a stranger about what I was going through.”

Using a public bathroom can be adjustment for any college student, let alone someone battling IBD. Elizabeth Haney IMG-1374was diagnosed with ulcerative colitis less than one week before leaving to study abroad for three months. She says the fact the trip still happened and was so successful was a highlight of her college career. While back on campus in the States, she recalls how stressful it was prepping for colonoscopies.

“Prepping for a colonoscopy while you live in a house with three people but only have one bathroom was horrible. My mom would get me a hotel room for prep night when she could swing it financially.”

Rachel Wigell was only fourteen11886127_10153032256553321_8963053032556586310_o (1) when she became sick with IBD, so she barely had time to form a body image that didn’t include this disease. She says she was never somebody who was confident in her appearance, but having IBD didn’t help. From the prednisone “moon face” to issues with gas and continence, there have been lots of times where she felt too gross to be taken seriously.

“One trouble I had was plain old insecurity. Living in a dorm and sharing a bathroom with 20 other women isn’t fun when you’re having diarrhea multiple times a day. I was desperate to hide how “gross” I was from other women, which meant I didn’t have a support system.”

For Sydney Mouton, being immune compromised IMG_1080caused her to get sick all the time and the community bathrooms weren’t of much help.

“I was in the middle of my worst flare in college, so I had a lot of issues from medication side effects that were more difficult to deal with while in school and trying to have a social life.”

Couple the stress of the living situation with the fatigue that’s brought on from the disease and it can be incredibly challenging. So many students living with IBD have shared with me the difficulty of wanting to be “normal” and like everybody else but then having to deal with the extreme health consequences that generally result from a “fun” night out.

Sarah Kate struggled with handling the unknown of the disease, while trying to help her friends understand her situation.IMG-1376

“Not knowing when I am going to feel well and having to explain to friends and them not really understanding why I felt well yesterday and why I’m not well today.”

Tips for students to calm the social stress

Be candid with your friends and open about your situation. The more you communicate, the better educated those around you will be. If people show lack of compassion or disinterest, that tells you right off the bat that their friendship is not worth your time and effort. Seek out friends who have your back, genuinely. Rather than downplaying your struggles and pain, paint a clear picture to those around you so they can support you and understand the nature of your experiences.

Give yourself plenty of time to get to and from class and social outings. Scout out the best places to have a safe, quiet rest. Pad your course schedule and extracurriculars so you don’t burn yourself out. Try to schedule your classes no earlier than 9 a.m. so you’re able to get plenty of rest each night.

Check out dorms on campus with private bathrooms. During my college experience, I lived in a quad my freshman year and lived with two roommates my sophomore year. I always had a private bathroom. Seek our dorms with these options available. The privacy and comfort will be invaluable.

Weigh the pros and the cons of a night out. If alcohol doesn’t agree with you, don’t push yourself just to try and fit in. You can still go out and have a great time and limit the amount of alcohol you ingest. It’s more fun to be hanging out with others and being sober than it is to be back at the dorm or in the hospital because you put your health in jeopardy.

If you’re struggling, don’t hesitate to reach out to the college counseling center on campus. As isolated and alone as you may feel in the moment, always know there is support available for you both near and far.

Click here for IBD on the College Campus: Getting the Medical Logistics in Check

Click here for IBD on the College Campus: The Challenge of Academics