The Challenge of Changing Doctors With Chronic Illness

Originally published by author Carrie Miller working for The Mighty web site.

The Challenge of Changing Doctors With Chronic Illness

I started my diagnostic journey in early 2008, nearly nine years ago. During that time, I have seen more doctors than I can remember, sometimes because I was referred to different specialties in my quest for answers, and sometimes because I moved to a different part of the country. Each time I see a new doctor, my diagnoses are refined, added to or sometimes changed.

My most recent doctor change was because my previous doctor was let go from the health center in my area. The man was an amazing clinician, but he did not like using the electronic health record system that was mandated, so I suspect that contributed to his sudden departure.

So what happens when you change doctors when you have a chronic illness? In some cases, you start over. The doctor may or may not look at your medical history, but he or she will likely want to order their own lab tests, x-rays or image studies. They may “take away” your diagnosis and put you back into the “what the heck is wrong with me?” category. After my initial diagnosis of fibromyalgia and “something else” in May 2008, I have alternately been diagnosed with chronic urticaria, cervical myelopathy, possible rheumatoid arthritis (RA), possible lupus, possible post-Lyme syndrome and I’ve had two doctors tell me that multiple sclerosis was not off the table.

The lupus diagnosis came in May 2015 when I started seeing the doctor that was fired. Despite years of negative ANA tests, I had a positive SSA/Ro test. Based on that test, I was diagnosed with lupus. Don’t get me wrong – lupus is a horrible disease. But it explained all of the “extra” symptoms that didn’t fit with fibromyalgia, such as the sun sensitivity, the rash on my face, the random low-grade fevers that lingered for weeks. After going through the stages of grief, I came to terms with lupus because it made sense.

I saw my newest doctor this Monday, and of course he wanted to start over. He actually said, “Let’s not call it lupus just yet,” and was probably confused when I explained that while I was perfectly happy to have several hundred dollars worth of lab tests to support his desire to get his own baseline on my condition, he would see negative results except possibly for the SSA/Ro. We also changed my medications. I return to see him in eight weeks so he can assess the effects of the medication and discuss my lab results. It should be a lively conversation.

My advice to handle changing doctors? Be open, but don’t stop advocating for yourself and your treatment. And remember, even though it sometimes seems like it, we are not our diagnoses.

The Challenge of Changing Doctors With Chronic Illness

The Best Gift I Gave Myself in Life With Chronic Illness

Originally written by author  Violet B for The Mighty web site.

The Best Gift I Gave Myself in Life With Chronic Illness

When you live with a chronic illness it affects your attitude, your outlook, and your mental and emotional health.  Some of us wear our ailments outwardly. Some of us have no visible symptoms at all. We may find ourselves feeling insulted or even humiliated from time to time, by how others treat us.

We get earfuls of advice from loved ones, who mean well, but just do not understand what we are going through. We may lose friendships and sometimes even family members. We may leave the workforce temporarily or permanently. We might experience the loss of a marriage or significant other, and we may even lose ourselves.

Through my many years of navigating with my chronic health conditions, without an actual diagnosis, I struggled to continue to lead a normal life. I kept pushing myself to do things that I felt I should be able to do, and the push-back from doing so cost me tremendously every time.

I became very distant from others and eventually was isolated.  I felt alone, empty, sad, terrified, frustrated and angry at myself, and at all of the doctors who I had sought out for help to learn what was going on with me. I felt guilty about calling off from work more and more until I was rarely there. I felt guilty because I was no longer able to be a dependable co-worker, employee, friend, minister, wife, mother or daughter.

Did not like the person I was becoming because of my health. I didn’t know who the person looking back at me in the mirror was anymore. Most of the time, I wouldn’t even look at myself in the mirror. Not only did my health change, but my physical appearance changed, too. I struggled as a woman of faith with why I had to suffer so tremendously in a way that was exhaustively and endlessly painful.

Then one day I realized that it wasn’t my fault. It wasn’t my fault that I had experienced a physical trauma in my life that may have triggered some of my chronic health conditions. It wasn’t my fault that I had to call off from work because I was unable to function and do basic things for myself like get out of the bed, stand to take a shower, cook, do laundry, tidy up my place, drive and go to the store. It was simply not my fault.

Once I understood that these chronic undiagnosed health conditions were not my fault, I was able to forgive myself and forgive others for any mistreatment, negative words or conversations. I forgave them for them not knowing what I endured for many many years on a day to day basis because I live with mostly invisible illnesses and had conditioned myself to suffer in silence.

If you can relate to anything that I have said, I want you to take a moment and forgive yourself first and foremost, and then forgive everyone else who does not know what it is like to be you. Whether these people are your relatives, your spouse or partner, your children, you co-workers, church members or doctor and their staff, forgive them. There is no reason for you to live with unforgiveness in your heart towards yourself or anyone else.

You are a warrior. You have proven time and time again that you can make it through each day that you live. You are incredibly strong, smart, beautiful or handsome, and even though you are going through what you are going through, you have the ability to impact others whom you may come into contact with. If you operate in un-forgiveness the impact you have will be a negative one. But if you operate in forgiveness, you can have an influential and positive impact on others.

Give yourself and others the best gift you can possibly give, which is forgiveness. Now that you’ve done that, continue to strive be the best you can despite the mountains you may have to climb in your life.

The Best Gift I Gave Myself in Life With Chronic Illness

What It’s Like to Be Diagnosed With a Crohn’s Disease in Your 20s

Original was written by Catherine Emerson an author for The Mighty web site.

What It’s Like to Be Diagnosed With Crohn’s disease in Your 20s

On the surface, I look exactly like your average 21-year-old. I work, socialize and study like most of my peers. But there is an exception; I was diagnosed with Crohn’s disease and a severe form of irritable bowel syndrome (IBS) about a month before my 21st birthday.

When I turned 20, I welcomed the end of my teenage years with open arms. I was excited by the prospect of the fun and exciting experiences that I would most likely participate in over the next decade. But when my health started to decline and I was finally given my diagnosis, my world as I knew it completely shattered.

I had always been someone who had a small amount of social anxiety after a few bad experiences with unstable relationships, but this was exemplified in a way I could never imagine. At first, while my condition was first settling down as I began my treatment, I was completely terrified of being away from home for more than a few hours. I was still experiencing the effects of chronic fatigue that accompany my condition, but I was also still enduring a fair amount of pain and I was terrified of a flare-up. Bowel conditions are so stigmatized against that the thought of my condition suddenly reverting made me fear social judgment like never before, and my self-esteem suffered drastically. I felt gross and defective. I was young, lively and intelligent, but I felt completely repulsive and undesirable.

As my condition began to settle, thanks to a drastic lifestyle change of converting to the low-FODMAP diet and beginning medication, my self-esteem suffered in other ways. Now I could go out and socialize more, but it was completely conditional to what the nature of the event was and how my body was feeling. I had to say goodbye to eating and drinking whatever I want, and unfortunately, people noticed. Although being asked why I wasn’t drinking alcohol was an innocent enough question in its intentions, I felt humiliated in providing the actual reason as to why. It is completely irrational, but even now I panic and make an excuse like needing to drive, because I feel embarrassed to admit that my ability to consume alcohol is completely dependent on how my body is feeling at the time, and sometimes I just don’t want to risk it. On the outside, not being able to eat and drink to your hearts desire doesn’t seem like it’s much of an issue. But, in your twenties, it is extremely socially isolating when people act like it’s a buzz-kill.

These self-esteem issues often led me to overcompensate for who I am. I would put in more effort than what was required for my appearance in that context, and I completely changed how I portrayed myself on my social media accounts. After witnessing the first few people become awkward upon finding out what was wrong with my body, I was determined to be “normal” and fit in, so I made myself seem as appealing as possible. It seems comical, but at 21 you still have the majority of your adult life ahead of you, and when you feel isolated and different, you start to develop this irrational fear that people wont want to be around you. Most 20-something-year-olds are determined to live carefree and enjoy their freedom and independence as much as possible, and when your lifestyle restrictions start to impose on what they want to do, you feel the rejection and judgment at full force.

Meeting new people and the thought of dating still terrify me, but I’m slowly learning to get over my fears. I still hold the self-deprecating view that I’m too complicated to be around because my diet is so restrictive in where I can go out and what activities I can participate in. I know it’s irrational, but I cant help but feel like I’m too much work for what I’m worth, so people just won’t bother; and this fear makes me worry even more about what my own self esteem issues will actually do when I enter into new relationships. Now I keep finding myself wishing I hadn’t have done this, or I hadn’t had said that because I don’t want to make a fool out of myself and push people away.

So, on the surface, I look like a healthy 21-year-old. I go out, I socialize, I party, I study and I work like most people I know, but everything is dependent on the meticulous effort I make every day so ensure I am able to do that. I know that sometimes it sucks that I’m not able to participate like everyone else, and that my self-esteem issues can be a buzz-kill sometimes, but there are real reasons for it.

The more accepting our society becomes about embracing people with chronic illnesses and health conditions, the happier I, and many other people in similar situations, will feel. Please think before you make comments, and be understanding of the demons people like me battle every day. I am learning to live and love myself again, but it will take time and a hell of a lot of support.

What It’s Like to Be Diagnosed With Crohn’s disease in Your 20s


17 Things People Wish They Knew When They Started Prednisone

Original work by a staff member Erin Migdol at The Mighty web site.

17 Things People Wish They Knew When They Started Prednisone

Prednisone is a corticosteroid that is used as an anti-inflammatory or immunosuppressant, which means it’s often prescribed to people with chronic conditions such as arthritis, lupus, multiple sclerosis and some skin conditions, among others. Though it’s a commonly prescribed drug, many users are surprised by its side effects, which can affect many parts of the body including mood and appetite.

While every patient’s experience is different and it’s hard to predict exactly how your body will respond, it can be helpful to know what’s possible when it comes to starting prednisone. We asked our Mighty community to share what they wish they had known before they started taking prednisone.

Here’s what they told us:

1. “It was a quick fix, not long term, and you have to decide if the side effects are worth the benefits, especially with other conditions.”

2. “[I wish I knew that] I would still be on it 20 years later! Weight gain, sleeplessness, thinning bones causing multiple fractures in my feet and in turn chronic pain. A wonder drug in controlling flares of disease activity, but the pay-off is huge.”

3. “I wish I knew that it would [make me feel like] a horrible witch of a woman, fueled by massive amounts of food and zero sleep. But that, most of the time, those seven days of misery would be worth it because, for me, it almost always works.”

4. “[I wish I knew] exactly what moon face was — that my whole face would look super swollen and puffy for a really long time… It’s an amazing medicine, but the side effects are ridiculous…”

5. “It’s hard to come down. I wish I knew how serious it was to go up on a dose because it’s so hard to lower the dose. It’s the drug we love to hate.”

6. “A warning about side effects would have been nice. Especially warning that it is only a temporary fix for my inflammation, causes serious mood swings and will make me so constantly hungry that food won’t seem to help at all.”

7. “[I wish I’d known] how I’d miss it so very much once I was off it for helping my pain, but so glad to be off due to weight gain and mood disturbances.”

8. “I couldn’t control my weight, my mood, or my appetite. This single medication could both help me and hurt me in more ways than one.”

9. “It makes me so ravenously hungry… (Been on it for 15 years, but it aids me in not rejecting my transplanted lungs, so what’s the other choice?)”

10. “The weight gain, how it affects your nerves, destroys your bones long term, but nothing else works like it if you need it.”

11. “While many people have terrible side effects it’s not guaranteed you will experience all of them — I didn’t. I get medication through IV every six weeks. Adding prednisone to my biologic made my life easy and less painful. I did gain a few pounds, but overall the symptoms were almost nonexistent. I will say the oral prednisone has an awful smell, to the point you can taste its disgustingness when you open the bottle.”

12. “I expected the weight gain and hair loss, but I didn’t expect my teeth to get so sensitive or the insomnia that accompanies taking it.”

13. “You have to plan your life around it, but odds are you are already doing that with your illness so why not through another wrench into it?”

14. “I wish they’d shown me the three pages of common side effects before prescribing me it so I could make an informed decision.”

15. “You don’t always have the same side effects each time. I had prednisone in 1995-1996 and the whole 13 months I was on it I was constantly hungry. When I was on it for six months last year I completely lost my appetite and lost almost 20 pounds the first month.”

16. “[I wish I’d known] to go to the grocery store for healthy foods first because I eat everything in sight.”

17. “Prednisone and I have a love/hate relationship. I have anxiety and it increases my anxiety for me, so during my prednisone courses I get frequent panic attacks. Not only that, the acne break-outs and mood swings are just horrible. It’s always the go-to; I wish there was another way to stop inflammation and pain… It’s a win/lose situation it seems.”

17 Things People Wish They Knew When They Started Prednisone

6 Things Original Writer Learned From the Emotional Toll of Fibromyalgia

Originally from Violet B a contributor from The Mighty web site.

6 Things Original Writer Learned From the Emotional Toll of Fibromyalgia

She was recently diagnosed with fibromyalgia after almost two decades of trying to navigate through unexplainable chronic pain and fatigue. Although there are a lot of lifestyle changes that will come with the territory, you will also experience a lot of emotional ones, too. Here are some of the things I have learned along the way.

1. You May Be Unfairly Judged and/or Discriminated Against

From doctors, your workplace, family and even closest of friends, you might find yourself being made to feel like you are a liar, seeking attention or not trying hard enough to be healthy. It’s hard for some people to understand or be empathetic about things they truly do not understand or have a realm of experience to draw from. People with invisible chronic illness have encountered an endless array of naysayers along the way. You are not alone.

2. You May Lose Relationships With Friends and Possibly Family Members

Regardless whether you choose to explain to people what you are going through or spare them the details, altogether your friends and family will likely continue to expect you to be present in their lives and their special events and occasions along the way. They may not understand the pushback you experience from forcing yourself to be present in their lives. They may not understand your lack of presence does not mean you love them less or simply do not care. They may not understand how difficult it is for you to face each new day in your life and how hard you fight to not lose hope.

3. Your Marriage and Family Relationship May Be Strained At Times

Having a spouse or parent living with a chronic illness may take its toll on your family. Your spouse could be forced to take on the weight of being both parents to your children and the responsibilities that may have at one time been divided up between spouses. It might be difficult for young children to understand why one parent can be active and present in their lives and the other parent is not.

4. You Must Learn to Stop Feeling Guilty

Your friends, family and co-workers may tell you that because you are no longer dependable and usually absent, you have caused unfair hardship to them and others. They may not understand or know what you go through each day, what is going on with your health or why you can no longer function normally anymore. As your health and life begin to unravel and you can no longer lead a normal lifestyle, be part of the workforce, attend church regularly or be present at special events and occasions, people may become insensitive and accusatory towards you before altogether distancing themselves from you. It can happen with even those closest to you and the best thing you can do for yourself is to stop feeling guilty for what you cannot control and continue to love them and cheer for them from a distance, even if they do not know you do.

5. You Must Love Yourself

The emotional toll that living with a chronic illness can have on you after the initial onset can be devastating to some. As my health deteriorated rapidly and seemed to spiral out of control, it became difficult for me to want to live. If you begin to question whether or not your life is worth living anymore or if things will be better if you simply don’t wake up anymore, you need to seek help immediately. Not only are you worthy of love, you are worthy of life and need to learn how to live the best life possible despite what you are going through.

6. You Are Not Alone

Even though isolation does come with the territory when you are dealing with a chronic illness, you are not the only person in this entire world who is going through what you are going through. You may think you are, but it simply isn’t true. There are other warriors out there – you just haven’t come across them yet.

6 Things Original Writer Learned From the Emotional Toll of Fibromyalgia

5 Things I Don’t Admit on My Bad Pain Days

Was originally published by The Mighty contributor Sharilynn Battaglia, she writes about chronic pain.

5 Things I Don’t Admit on My Bad Pain Days

Have you ever had a day when you just stared off into space? Not staring and thinking deep thoughts about your future. Just empty, with random thoughts floating around occasionally. But nothing coherent. And definitely nothing cheerful. This is the place I am in right now.

My brain has just shut down. The disease has become too much to handle any more and my brain went bye-bye. So, I thought I’d let you into the taboo side of chronic illness and pain. The stuff we really don’t want to admit. The thoughts we may have when our brain and body are at their lowest.

1. I am tired. That’s why my brain shut down. Fighting pain is hard. And those of us in daily pain don’t ever get to rest. The constant struggle of trying to stay physically in control of pain is draining. Add to that the daily demands of running a home and raising kids and you have the perfect storm for extreme fatigue. And extreme frustration. And we crack. Because being nice and patient and understanding is also hard work. And when our brains get tired of fighting our disease, we may not care about the niceties anymore. My brain already fled so only fight is left. And it doesn’t matter who gets in the way (sorry)!

2. I am sad. It’s emotionally drained. It’s extremely hard to deal with an illness every day and then still be able to deal with what comes in every normal relationship I know of. Disagreements. My husband and I are no different. We argue. It’s not always roses and chocolate. And to be honest, I don’t always have the fortitude to deal with any discord, whether it’s about a burnt dinner or the several hundred bucks he just lost at the casino. I’ll end up in a puddle of tears. (And if it’s about the kids, fuhgetaboutit!) Pain makes everything personal and much more intense. So the small stuff becomes huge and nastiness becomes much more easy.

3. I am depressed. It’s hard to stay positive and accepting of a disease that causes so much pain, weakness, degeneration, loss, forgetfulness, uncertainty… I could go on, but you get the point. Obviously, I have accepted my illness. I’ve had to. I would never have gotten out of bed otherwise. But these diseases are progressive and constantly change over time. So we have to constantly readjust our mindset. And let’s be honest, it has to become part of who we are. We can’t exist by putting on rose-colored glasses and ignoring it. So the feelings have to be accepted and allowed to come out, too. But that can cause intense fear that can leave us overwhelmed to the point of motionlessness.

4. I am confused. And confusion is very frustrating. And time-consuming. You see, my body remembers everything it used to be able to do. From dancing to walking miles to rearranging furniture all by myself carrying pieces up and down stairs. So sometimes, I still think I am capable and try to do those things expecting that I will be able to. And when I can’t, I either end up hurting myself or I have to find someone else to help me.

5. I want to give up. I know the facts about my disease. I know what my back injuries mean. I know what the future probabilities are for disease progression and pain management. And I worry about where I will end up when I can’t care for myself and who will care for me. I worry about that when I’m tired, hurting, or alone. And I’m alone a lot. And I’m scared. I think about giving up a lot, too. I don’t talk about it, but I think about it. And honestly, in some ways, giving up feels equivalent to being pain-free again and on days like this, that’s all I really want.

When my brain gets like this, what I really need is some sort of regeneration. I’ll watch a movie, find funny shows on TV, watch kittens on YouTube, or bundle up and sleep! These “lost brain” days don’t last forever. And they’re not as common as they may seem, though they do tend to come in clusters. But after over 20 years of this, the silver lining seems to be the fact that by letting these days happen, you allow for a mental reset. The negativity gets acknowledged, then let go – and that’s exactly what needs to happen.

5 Things I Should Admit on My Bad Pain Days


14 Tips for Getting Through the Work Day With Fibromyalgia

Original writing by The Mighty staff  member Erin Migdol

14 Tips for Getting Through the Work Day With Fibromyalgia

Sitting at a desk, standing at a register, or performing other physical and mental requirements of a job when you have fibromyalgia aren’t always possible (and that’s OK). For those who are able to work while living with fibromyalgia, getting through a work day filled with brain fog, pain and fatigue can feel like a monumental task.

We asked our Mighty community with fibromyalgia what advice they would give to others who work while managing the symptoms of fibromyalgia. The most important take-away as you gear up for another work day: It’s OK to do what’s best for you and your health.

Here’s what they community told us:

1. “Don’t hold back your emotions regarding how your fibro is affecting you. Cry if you need to. Be open with yourself and others. The pain/symptoms you experience on a day-to-day basis are awful and beyond difficult to deal with. You’re going to have feelings about it. Just don’t be embarrassed or afraid to take off the ‘I’m fine’ mask for a while and let it all out.”

2. “If your job is causing you too much stress, it will make you much worse. Reduce stress in any way possible. Learn when to say no and when to ask for help. I started working freelance so I could make my own schedule and limit stress. Working from home allows me to save my energy on doing other things.”

3. “Number one advice is find a job that won’t drain you. Do something you love and be in a positive environment. I’ve noticed when I’m around certain people at work it feels toxic. Other days when I’m with different people they get my mind off the pain for a bit and it helps me get through the day.”

4. “I only work part time, and it’s taken several years to build up to it. My suggestion is to take things one step at a time. I tried to come back to work full time as soon as I found medicine that helped, and I ended up having the worst crash to date and had to quit that job after only a week. Take it slow, and do what you can.”

5. “Biggest thing that helps me is taking a nap on my lunch break daily! I carry a pillow and blanket in my car and sleep in the back seat… Crack a window during hot weather and enjoy the sound of the rain in the winter, but take time when you can to really relax!”

6. “Most people are not jerks — they are kind and understanding if you talk to them before things go south. The best thing I ever did for myself was explain to the people my illness most affects (which includes my boss and professors) what I am living with.”

7. “Do not push your body to do things just to please your colleagues. Feel your body, listen to what it says… when it says stop, you owe it to yourself to stop.”

8. “Self-care is vital in maintaining ability to work and function. It’s not only what you do at work but also off work. Get plenty of rest and have good positive people around you. Our mind, body and spirit are all connected. Nurture all three and it brings the balance that’s needed to thrive.”

9. “It doesn’t work for everyone, but I find a positive mindset and planning ahead are the best ways to cope! ‘I can do this!’ works wonders on an already difficult task, telling yourself you can’t do it is only going to make it harder (this doesn’t apply to things outside of your limits though — don’t do anything that’ll hurt you more if you can avoid it!) and planning some time to recover throughout the week is absolutely vital.”

10. “I keep a heating pad, heated fingerless gloves, and an electric blanket under my desk to help me get through the day. Make sure you get up and move around every so often too, or you [could] get too stiff.”

11.I work full time M-F, up at 5 a.m. home at 6:30 p.m. The only way I manage is consistency. Bed at the same time Sunday through Friday. Relax Saturday. Light chores and preparing on Sunday… Biggest advice is pay attention to what affects your body, pace yourself and be consistent.”

12. “Don’t forget to ask for help when you need it, and saying no isn’t a bad thing.”

13. “Find work that gives you satisfaction. Whether that is serving people, being a cashier, or physical work – the important thing is to look for the satisfaction of a job well done. I find that satisfaction does help counteract the pain and fatigue that we all feel at the end of the day.”

14. “Don’t feel bad if you can’t work because of your illness. You’re not a loser. You are not lazy. You are sick… a huge difference!”

It’s OK to do what’s best for you and your health!

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This Is Saint P. Blogging’s Page To Sign Up To Receive The Latest Posts About Living With Chronic Diseases

This is a free list that is trying to help other people survive with a illnesses.  Great for actual sufferers and people who know someone who has a chronic condition!



Dear College Professors Teaching Student With Mental Illness

Originally written by Savanah Quirion, a contributor to The Mighty web site

Dear College Professors,

I am a student with mental illness. Before you panic, let me explain. You can teach me like you can any other student, and treat me the same way. I don’t know if you have experience with students that have mental illnesses, but let me tell you about me.

Let me start off by telling you some things that I am not.

I am not violent.
I am not a dramatic person.
I am not an angry person.
I am not incapable.
I am not “crazy.”
I am not a danger.
I am not someone to be feared.

Now I’ll tell you some the things I am.

I am a hard worker.
I am smart.
I am creative.
I am funny.
I am a people person.
I am kind.
I am caring.
I am perfectly capable.

I can accomplish so much more if you focus on what I am, instead of what you might assume I am. I will try to be as open with you as I can about my mental illness, but please understand that I may have faced stigma and discrimination in the past, so I might not just jump in and tell you what’s “wrong” with me.

I hope that after reading this short letter you will be able to better understand me, and future students you have with mental illnesses.

In closing, I am an open book. Any questions?


A Student Who Just Wants to Learn

This Chronic Gut Problem May Be Staggeringly Common

More Than 3 Million Americans Say They Have Inflammatory Bowel Disease.

More than 3 million U.S. adults may have inflammatory bowel disease, according to a new government estimate. That’s nearly triple the number of some previous estimates, the researchers said.

The new estimate is based on a national survey conducted by researchers at the Centers for Disease Control and Prevention (CDC). Survey respondents were asked whether a doctor or other health professional had ever told them that they had either Crohn’s disease or ulcerative colitis, which are the two types of inflammatory bowel disease (IBD). Based on the responses, the researchers estimated that 1.3 percent of U.S. adults, or 3.1 million Americans, have IBD.

People with IBD have chronic inflammation in the gastrointestinal tract. Patients often have abdominal pain, cramping, fatigue and diarrhea. They may also have a poor quality of life, as they often have complications and need to be hospitalized or undergo surgery, the report said. [11 Surprising Facts About the Digestive System]

“According to this report, the prevalence of IBD is much higher than previously estimated,” said Dr. Siddharth Singh, a gastroenterologist and clinical assistant professor of medicine at the University of California, San Diego School of Medicine.

Knowing the true rate of IBD is important because that knowledge will help health care providers offer better “strategies for high-value care” to patients with the condition, Singh told Live Science. It will also help researchers understand the impact of this condition on the health care system, he said.

The report additionally found that IBD is more common in some groups, including adults ages 45 and older, Hispanics, non-Hispanic whites, and adults with less than a high school level of education.

“For a disease traditionally thought to affect young adults, it is surprising to see a high prevalence of [IBD] in older adults,” Singh said. The report found that 1.5 percent of adults ages 45 to 64, and 1.7 percent of adults ages 65 and older said they had been diagnosed with IBD.

In the new report, the researchers looked at data gathered in 2015 during the CDC’s annual National Health Interview Survey. In this survey, researchers conduct in-person interviews with participants from across the U.S. about a broad range of health topics.

Previous estimates of IBD prevalence in the U.S. have come from surveys done in limited geographic areas, or from health care claims data. For example, a study published in 2013 used claims data from 12 million people and estimated that 1.2 million U.S. adults had IBD. A 2007 study, based on the residents of one county in Minnesota, estimated that, nationally, 1.1 million people had the disease.

“Some individuals may misinterpret their symptoms” and think that they have IBD when they may actually have irritable bowel syndrome, he added. [The Poop on Pooping: 5 Misconceptions Explained]The authors of the new report, led by James Dahlhamer of the CDC’s National Center for Health Statistics, also noted that a limitation of the new estimate was that it relied on people’s self-reports of being diagnosed with the condition.

There is no known single cause of IBD. “IBD is complex disease, and is caused by an interplay of several genetic and environmental factors, such as diet and [the] intestinal microbiome and our immune system,” Singh said.

[11 Surprising Facts About the Digestive System]

“According to this report, the prevalence of IBD is much higher than previously estimated,” said Dr. Siddharth Singh, a gastroenterologist and clinical assistant professor of medicine at the University of California, San Diego School of Medicine.

Knowing the true rate of IBD is important because that knowledge will help health care providers offer better “strategies for high-value care” to patients with the condition, Singh told Live Science. It will also help researchers understand the impact of this condition on the health care system, he said.

The report additionally found that IBD is more common in some groups, including adults ages 45 and older, Hispanics, non-Hispanic whites, and adults with less than a high school level of education.

“For a disease traditionally thought to affect young adults, it is surprising to see a high prevalence of [IBD] in older adults,” Singh said. The report found that 1.5 percent of adults ages 45 to 64, and 1.7 percent of adults ages 65 and older said they had been diagnosed with IBD.

Originally published on Live Science.