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Most people with Crohn’s disease know all too well what a flare feels like. Symptoms like diarrhea, abdominal pain, nausea, and exhaustion can be uncomfortable and embarrassing. So it’s a relief when they disappear. But if you don’t have any symptoms, does that mean you’re in remission? 

The answer is more complicated than you might imagine. There are several types of remission. And “remission” tends to mean something different to patients than to their doctors, says Ariela Holmer, MD, a gastroenterologist with the NYU Langone Inflammatory Bowel Disease Center.

“Patients focus on symptoms, because those are what cause decreased quality of life and disability and why they come to see us in the first place,” she says.

But to doctors, remission means that your small and large intestines are healthy so you can avoid complications, she says. There can be a disconnect between symptoms and what’s going on in your digestive tract.

“You can be walking around feeling fine and still have active disease that’s visible when we do an endoscopy or MRI,” she says.

Ultimately, she explains, having inflammation in your intestines is what leads to complications.

Crohn’s disease is often aggressive, Holmer says. If it’s not treated the right way, Crohn’s can lead to ulcers and holes in the wall of your intestines. You may develop strictures (narrowed areas in the intestine), as well as fistulas (abnormal channels that connect your intestines to another organ).

These complications often need to be repaired with surgery. Long-term inflammation in your intestines also raises the risk that you’ll get colon cancer.

The bottom line: Even if you don’t have symptoms, you’ll need testing to find out whether your disease is still active.

What Are the Types of Remission?

The definition of remission in Crohn’s disease has changed over the past few years. Most inflammatory bowel disease (IBD) experts use at least four different terms to describe the various types of remission.

Clinical remission. This is something you can identify on your own. It simply means that you don’t have any noticeable symptoms. 

Biochemical remission. This means you’re in remission according to lab tests, specifically blood tests and stool tests. Your gastroenterologist should do blood tests to monitor your level of C-reactive protein, an inflammatory substance, plus stool tests to check your level of another inflammatory substance called calprotectin. Ideally, both markers should be low for you to be in biochemical remission.

Endoscopic remission. Endoscopic remission means that when you get a lower endoscopy (a colonoscopy or sigmoidoscopy) your doctor sees no signs of inflammation, ulcers, or bleeding. That’s a very good sign that your disease is under control.

The International Organization for the Study of IBD recommends that doctors use endoscopic remission as the long-term treatment target for Crohn’s disease. In other words, the fact that you feel better isn’t enough. Doctors should keep tweaking your treatment until your intestines show proof that you really are better.

During your endoscopy, your doctor will probably also take small samples (biopsies) of your intestinal tissue to be analyzed. If no inflammation can be seen under a microscope, you’re said to be in histologic remission. (Histology refers to the microscopic examination of tissue.)

Deep remission. If you meet the definitions for both endoscopic and clinical remission, congratulations.  You’re in deep remission. Research has found that people with Crohn’s who reach deep remission soon after being diagnosed and stay there for at least a year are less likely to have advanced disease and complications later on.

How to Avoid Relapses

There’s no cure for Crohn’s disease. People who have it tend to go through periods of remission with  flares from time to time. Reaching deep remission should increase the chances that you’ll stay in remission longer — perhaps for many years. But other things also affect what your future with Crohn’s might look like, Holmer says.

Those include how old you were when were diagnosed. People diagnosed after age 30 usually fare better than those who’ve had Crohn’s since childhood. It also matters how much of your intestines has been affected by Crohn’s (less is better).

It also makes a difference whether you’ve had complications like ulcers, strictures, or fistulas. If you’ve had them before, you’re apt to have more complications in the future.

There’s no way to guarantee you’ll stay in remission. But you can tip the odds in your favor. Take your medications as your doctor directs. And see your gastroenterologist regularly — even if you feel fine.

“You should always stay in touch with your doctor and continue having your disease monitored with biochemical and endoscopic tests,” Holmer says.

“Some patients think, ‘OK, I’ve been in remission for 5 years, so I can stop seeing my doctor.’ Those are the ones that end up relapsing.”

Oct. 21, 2022 – This past Monday was the long-anticipated debut of over-the-counter hearing aids, the day they could be sold at stores, pharmacies, and online after the FDA signed off on these less expensive options that require no health care professional’s input. 

What could be simpler? Just pick up that hearing aid you’ve been needing on your next Walmart run.

Several devices are now available, but the party isn’t in full swing yet, it appears. A quick spot check on Wednesday and Thursday at a Best Buy, CVS, Walmart, and Walgreens about 10 miles from downtown Los Angeles found no OTC hearing aid devices on the shelves, with store personnel suggesting a visit to their websites or to check other, larger stores. Many of the prices, listed online, are higher than earlier estimates of $300 to $500. And reading and understanding the product information can take some education.

Even so, hearing loss professionals – and probably countless spouses and friends tired of hearing “Huh?” – applaud the move, noting that this more affordable hearing help is sorely needed by many. About 37.5 million American adults report some trouble hearing, but only about one-fifth of people who could benefit from a hearing aid use one, the FDA says. Expense is a big reason, although the stigma of needing a hearing aid can play in, too. And device makers say by month’s end, more models will be in stores. 

Before shopping, here’s what to know and where to turn for help. 

Hearing Experts On Board

Hearing experts, including audiologists and doctors who are hearing specialists (ENTs or otolaryngologists), favor the option of OTC devices, if people don’t misjudge their hearing loss. 

“I think it’s great to have multiple pathways [to treat hearing loss],” says Catherine Palmer, PhD, director of audiology at the University of Pittsburgh Medical Center and chair of the American Academy of Audiology OTC Resources Task Force. “This is going to be a positive for some.”

Who Could Be Helped?

OTC hearing aids are not for severe hearing loss, and they aren’t meant for children. They work best and are meant for adults with mild to moderate hearing loss.  

“We know people aren’t accurate in judging their own hearing loss,” Palmer says. 

o decide how extreme your hearing loss is, experts say those with mild to moderate hearing loss  have trouble understanding conversation when in a group, in a place with background noise, or when they can’t see who’s talking. They may need to turn up the television or radio loud — at a high enough volume that other people notice it’s too loud. They may have trouble talking on the phone, and they may often ask others to repeat what they said.

But you need a hearing professional if you have trouble hearing in a quiet environment or can’t hear loud sounds such as cars or power tools.

Should you try those online hearing tests first? (Google “online hearing tests” and you get 241 million results.) Some experts say it can’t hurt, but others say they are unreliable and to get a test from a professional.

A few other red flags: If you have ear pain, pus, or blood coming from the ear, excess earwax, sudden hearing loss, or loss in one ear only, see a hearing professional. 

“You have to make sure there isn’t a medical cause for your hearing loss,” says Douglas Backous, MD, a neurotologist at Puget Sound ENT Proliance Surgeons in Seattle and president-elect of the American Academy of Otolaryngology – Head and Neck Surgery.  

OTC Hearing Aid Options

Some of the over-the-counter hearing aids are “self-fitting,” requiring an app or accessory that develops a program based on your responses to some signals; others have preset programs, a simpler option, and users can choose the best or switch back and forth between the programs.

Models include behind-the-ear, in-the-ear, and in-the-canal, depending on preference. Those who wear glasses might not prefer the behind-the-ear model, experts say. Those who want it as inconspicuous as possible may prefer in-the-canal.

Among the many OTC devices: 

• Lexie B1, Powered by Bose, is self-fitting and is $849.
• Eargo Max has four sound programs to switch back and forth to; $1,450.
• Jabra Enhance Plus has a variety of modes; $799.

Costs

The OTC devices are expected to cost about $200 to $1,000, compared to $5,000 and higher for prescription devices, according to the Consumer Healthcare Products Association, which counts device makers among its members.

OTC devices are unlikely to be covered by insurance, says Palmer, noting that the hearing industry is still fighting for more comprehensive coverage of prescription hearing aids.

More Smart Shopping:

Check the return policy for any device, says Anita Brikman, executive director of the Consumer Healthcare Products Association Educational Foundation, a nonprofit group. It should be listed on the labeling. She and others recommend at least 30 days. Some device makers offer much longer.

It may take time to get used to the device, and adjustments may be needed.

Check to see if companies offer more support, Brikman says, such as online help or a toll-free number, and check the hours they can be reached.

Several organizations offer online information about OTC hearing aids, including:

Buying online doesn’t rule out the need for an audiologist or ENT doctor. If an OTC device isn’t working properly, experts suggest taking it to an audiologist and asking for an adjustment. “Before you give up, go get a formal evaluation,” Backous says.

And even though it isn’t required before getting an OTC device, “It is still recommended that people get some sort of hearing test,” Brikman says. Insurance may cover the cost of the test.

Improved Hearing, Better Health

Hearing loss is linked with many ill effects on health, including less socializing because you miss out on conversations. Hearing loss can also boost the risk of falls.

But it’s also been linked with an increased risk of dementia. Recent research has found it is one of the top risk factors for dementia — and it can be changed.

What Aren’t OTC Hearing Aids

Googling “over the counter hearing aids” brings up a variety of devices, including personal sound amplification products or PSAPs. These are meant not for hearing loss, but to help boost the ability to hear certain sounds in certain situations, such as while bird-watching.

“These are regulated as consumer electronics, but not for hearing loss,” Brikman says.

Deciphering the FDA Terms, Device Labels

The FDA regulates OTC hearing aids as medical devices and requires OTC hearing aid makers to have a maximum output or volume on the devices to prevent injuries from boosting the sound too much. Devices must also have distortion control limits, noise limits, and limits on how quickly they process, amplify, and relay a sound. There are requirements on the range of frequencies and the insertion depth of the device. 

According to an FDA spokesperson, OTC hearing aids makers must register their facilities with the FDA, list their devices with the FDA, and have clearance or approval, as appropriate for the device type .

The new hearing aid category has been in the works since 2017, when the Over-the-Counter Hearing Aid Act of 2017 was passed as a rider on the FDA Reauthorization Act of 2017.  In July, President Joe Biden issued an executive order calling for the FDA to take steps to allow hearing aids to be sold over the counter and included a timeline for action. The rule establishing the OTC hearing aids became effective Oct. 17.

By Cara Murez and Robin Foster 

HealthDay Reporters

FRIDAY, Oct. 21, 2022 (HealthDay News) – In an unanimous vote on Thursday, a panel of U.S. vaccine experts recommended that COVID shots be added to the list of recommended vaccinations for children and adults.

Now it’s up to the U.S. Centers of Disease Control and Prevention to decide whether to follow the advice of its Advisory Committee on Immunization Practices.

Even if the agency does approve adding the shots to the schedule, it doesn’t amount to a vaccine mandate. State and local jurisdictions will still decide what vaccines are required for schools, NBC News reported.

“Moving COVID-19 to the recommended immunization schedule does not impact what vaccines are required for school entrance, if any,” said Dr. Nirav Shah, director of the Maine Center for Disease Control and Prevention. “Local control matters. And we honor that the decision around school entrance for vaccines rests where it did before, which is with the state level, the county level and at the municipal level, if it exists at all.”

“This discussion does not change that,” he told NBC News.

An example of local jurisdictions making their own choices includes the HPV vaccine, which has been on the immunization schedule since 2006. Only Puerto Rico, Rhode Island and Washington, D.C., actually require it for both girls and boys. Virginia requires the vaccine for girls, NBC News reported.

Despite having a recommended national vaccine schedule, vaccination rates for American children have dropped during the pandemic.

COVID cases are also declining among U.S. children, totally close to 28,000 last week, according to the American Academy of Pediatrics. It is the first time since early April that cases were under 30,000.

An advantage to having COVID-19 shots on the vaccine schedule is that insurance providers typically will cover recommended vaccines. Though federal dollars are still paying for those vaccines, that will eventually end, NBC News reported.

The COVID vaccines could also become a part of the federal Vaccines for Children program, which would provide them free to children covered by Medicaid.

“By adding it to the VFC program, it now makes these vaccines available to these uninsured and underinsured children,” said Dr. Julie Morita, executive vice president of the Robert Wood Johnson Foundation, former public health commissioner for Chicago and a former practicing pediatrician.

Morita called the schedule the “gold standard” for clinicians.

“I used to look every year, waiting for this vaccine schedule, to make sure I was following the best vaccination guidance available,” Morita told NBC News.

By Kalee Eichelberger, as told to Stephanie Watson

At one point in my life, I wanted to go to medical school and become a doctor. But because of my struggle with Crohn’s disease, I changed career paths entirely. The challenge of adjusting my diet to my disease led me to become a dietitian.

My health issues started early. I had health issues all through middle school and high school — GI symptoms like abdominal pain, loose stools, nausea, and vomiting.

It took a little bit of time to put the pieces together and get diagnosed. I finally learned that I had Crohn’s disease in 2012, when I was 17 years old.

The next challenge was finding a treatment that worked for me. My insurance company made me go through step therapy, where I had to try cheaper medications and fail on them before getting to try more expensive ones. Eventually I started on a biologic drug, which suppresses the part of my immune system that is triggering inflammatory bowel disease (IBD) symptoms. That has worked for me.

Underweight and Malnourished

Early in my disease, I had a very hard time maintaining my nutritional status. The combination of symptoms like abdominal pain, nausea, and vomiting made it difficult to eat and keep food in me. And really, who wants to eat when it triggers pain and discomfort?

On top of that, my GI tract was so inflamed that it wasn’t properly absorbing nutrients. As a result, I was very underweight. I just couldn’t keep the weight on.

It was really challenging for me to find foods and a diet plan that worked for me and didn’t aggravate my symptoms. After what felt like endless attempts at changing my diet, I ended up so malnourished that I needed a feeding tube for a couple of years, plus a central line for IV fluids so I wouldn’t get dehydrated.

For a while I was being fed solely through a tube to give my inflamed GI tract a rest. But I was gradually able to wean myself off of it.

My saving grace was getting connected to a phenomenal dietitian who showed me the link between medicine and nutrition and helped me create a diet plan that worked for me and my disease. When I realized what an asset a dietitian can be to people with IBD, I decided to go back to school and get a second degree in dietetics.

Fine-Tuning My Diet

My dietitian had me walk through my diet in very specific detail, asking me to record a food log of what I ate and how I felt throughout the day. He helped me figure out which foods were triggering my symptoms and helped me pinpoint my specific nutritional needs.

Through the process of trial and error, I learned which foods weren’t working for me. One was high-fiber foods. Certain whole grains, nuts, and tough-to-chew fruits and vegetables with intact skins and seeds give me cramping and upset stomach. The lactose in dairy foods is also a problem for me, leaving me feeling bloated and uncomfortable.

I don’t necessarily have to cut these foods entirely, but I do have to be more careful with them. I can have dairy and some fiber, as long as I watch the quantity. It’s all about eating these foods in moderation and being aware of what else I’m eating throughout the day.

I’ve had to take supplements to fill in the nutritional gaps from cutting these foods from my diet and from my other disease-induced vitamin deficiencies. For example, I wasn’t getting enough vitamin D  when I cut back on dairy foods, so my gastroenterologist suggested I take a calcium/vitamin D supplement.

Overall, I still eat a pretty well-rounded diet, although it’s relatively bland. I avoid spicy and acidic foods because they can trigger my GI symptoms. If I eat any meat, it’s typically lean — nothing too fatty. And I don’t eat a whole lot of fried or processed foods.

When I do have fruits and vegetables I steam or boil them, rather than eating them raw. They’re easier to digest that way. And I avoid pulpy or seedy fruits.

What I’ve Learned

Living with Crohn’s disease has given me a lot of empathy toward the people I work with. Eating is such a social component of everyday life, and it can become so stressful when you have IBD as there is no one-size-fits-all approach. Diet is very individualistic. I try to be patient as we work to find the diet that’s right for them.

Having been on the receiving end of a feeding tube, I understand what a challenge it is to maintain nutritional status and what a big task it is to need nutritional support. I remember how much my dietitian at the time empowered me to take control over my health and nutrition. If I could be that advocate for just one of my patients, I can honestly say that I’m grateful for my IBD and for the journey it has  brought me on.

Thankfully, I’m in remission today. I feel very healthy. I’m really empowered by what I’ve learned throughout the years, both from working with a dietitian and being a dietitian.

It was a journey to get to where I am today, and I hope that more people can get to the same point. I’ve learned how important it is to do your research as someone with Crohn’s disease. There’s so much conflicting information on the internet about IBD and diet.

It’s always important to work with trained specialists like a gastroenterologist and dietitian. Rely on the them, but don’t be afraid to advocate for yourself. No one knows your body better than you do.

By Sarah Shafer, as told to Stephanie Watson

I began having Crohn’s disease symptoms of as far back as age 13 or 14. At the time, I tried to hide my condition. The teenage years are already awkward. The last thing I wanted was for my friends and family to know how often I ran to the bathroom and how urgently I had to go.

I did eventually tell my family and I saw a doctor about my symptoms. The doctor thought it was stress-related. He assumed that I had ulcers.

When I was 25, I developed abdominal pain so severe that I almost passed out at work. It turned out to be an abscess. My doctor told me that it wasn’t normal for a 25 year old to have an abscess. That discovery led to further testing, which led to me being diagnosed with moderate to severe Crohn’s disease.

Keeping My Crohn’s Under Control

I’ve been on a couple of different biologic drugs to manage my Crohn’s disease. It took a few tries to get my treatment right. One involved a 4-hour infusion, which interfered with my job. I had to take a day off of work once every 5 or 6 weeks. The one I’m on now turned out to be easier because it’s an injection I give myself.

My doctor, Raymond Cross, MD, at the University of Maryland, has helped me figure out which combination of medications works best for me. He kept up with the research and gave me references to read. I feel like our partnership has made a big difference because it has kept me engaged in my own care.

By monitoring my symptoms and staying up to date on the latest research, I’ve learned how to control my Crohn’s flare-ups. Today I know how to stick with my treatment plan and manage my triggers.

Fine-Tuning My Diet

About 8 years ago, I started to read research on the link between food sensitivities and Crohn’s disease. For 3 months, I cut out dairy and gluten to see if that helped my symptoms. Then I slowly reintroduced these foods, a little at a time.

I came to realize that dairy is OK for me in limited quantities, but gluten is a consistent trigger. I cut gluten out of my diet, and I’ve avoided it for about 10 years.

Stress Management

My disease is under pretty good control, but whenever I get stressed, the frequent urge to go to the restroom comes right back. So I try to keep my stress in check.

I find that running is one of the best stress relievers, but it can also be a problem for me. It isn’t always easy to get to a bathroom when you’re on a jogging trail.

I’ve run seven marathons, but I have had to get creative. I either find trails that have restrooms along the way, or I run on a treadmill so I can stop and go the bathroom whenever I need to go.

Medication Management

Sticking to my medication regimen is also key to managing my symptoms. I take a pill every morning.

I also give myself an injection of the biologic once every 10 days. At first, I played around with the frequency of the injections. I started with one injection every 14 days. When that wasn’t enough, I went down to once every 12 days, and now I space the doses 10 days apart.

I can tell when I need my injection. As the day gets closer, I become more sensitive to dairy foods and the frequency of my bathroom visits increase. So I don’t mess around with the timing.

I have to be careful with my medication when I travel. Because the medicine has to be kept chilled, I keep my schedule in mind when planning a trip. I either have to bring a cooler pack with me or make sure that I have somewhere to keep the medicine cool until I reach my destination.

A Good Support System

Managing Crohn’s flare-ups is easier when you’ve got a strong support system. Having someone you can talk to about how you feel is really important. All those years when I was too embarrassed to discuss my symptoms with anybody was tough on me emotionally, as well as physically.

My husband has been extremely supportive. Not everyone you meet will be willing to change their diet and lifestyle to accommodate your needs, but he has.

It makes a big difference when the people in your life are supportive and they don’t make you feel like you’re impeding on their lives by having to make accommodations, like avoiding certain foods or stopping multiple times to use the bathroom during a road trip. When the people around you are supportive, it can make a big difference in how you feel and how well you manage your Crohn’s disease.

By McKenna Plant, as told to Barbara Brody

I started having Crohn’s disease symptoms when I was 15 and was formally diagnosed about a year later. In a way, I was lucky: Many people wait years before getting the right diagnosis, but I got a jump-start because my father has ulcerative colitis, another form of inflammatory bowel disease (IBD). He rarely talked about it when I was younger — I don’t think I even heard the words “ulcerative colitis” or “inflammatory bowel disease” until I started having symptoms myself, but once I did, he opened up and became my advocate.

In the years since — I’m 29 now — I’ve had a rough ride. One of the hardest things about living with IBD is the unpredictability. One day you could be feeling great and the next you’re curled up in a ball. I’ve found that connecting with others with IBD is immensely helpful. I was initially reluctant to join support groups because I thought that they were only for old people or those who wanted to sit around commiserating about their problems. But after I gave them a try I realized that it’s a relief to be able to open up in a safe space. I’ve also spent a lot of time on Instagram engaging with people who are really vocal about their experience with IBD or just chronic illness in general.

Over the years as I built my IBD tribe — which now also includes my fiancé, who has ulcerative colitis — I’ve become empowered to advocate for people with IBD. I started volunteering with the Crohn’s & Colitis Foundation when I was a teenager. When I graduated from college, I joined the staff that manages Camp Oasis, the foundation’s residential summer camp for kids with IBD. I also frequently speak at fundraising events. I truly hope that by sharing my journey I’m encouraging others to share theirs.

Talking about IBD isn’t easy. It’s not a glamorous illness, and discussing your intestines and bathroom habits can be embarrassing. But I believe it’s the best way to get the support you need while educating others. There are so many misconceptions about IBD, and it’s helpful for those who have it as well as those who don’t to learn the facts. Some misconceptions I try to dispel:

“If you don’t look sick, you can’t be that sick.”

This is a big one for anyone with an invisible illness. I look like a young, healthy, active person, but that doesn’t mean my body isn’t attacking me on the inside.

“You’d feel better if you just ate healthier.”

I wish it were that simple! Crohn’s is a chronic autoimmune ailment, and when I’m in a flare I won’t go near a vegetable. My body can’t even digest a piece of lettuce at that point.

“It’s not a big deal; I have IBS.”

IBD sounds a heck of a lot like IBS (irritable bowel syndrome), but they’re totally different. I fully understand that some people with IBS feel lousy, but it’s not the same thing as having an autoimmune condition. It’s not unusual for people with Crohn’s to develop serious complications including abscesses, bowel obstruction, and fistulas, which is when the body forms a tunnel that connects the intestines to nearby organs or tissue.

I have a fairly severe case of Crohn’s, and I’ve already had to have two surgeries: one that entailed removing about 10 inches of my small intestine and another to create a permanent ostomy, which allows stool to exit my body though an opening (stoma) on my stomach and into an external ostomy bag.

“Just take your medicine and you’ll be fine.”

Even the strongest IBD medications on the market (I get two via infusion every 4 weeks) don’t work for everyone. And sometimes a drug that initially works for you stops working. That’s really scary as a patient because you’re worried you’re going to run out of options. It’s also why fundraising is so important; we need new treatments so that everyone with IBD can get the help they need.

“Getting an ostomy will ruin your life.”

I got my ostomy about 4 years ago, and I wish I had done it sooner! Before I had my ostomy I was constantly worried about where the closest bathroom was. I always kept an emergency kit in my car with an extra pair of underwear, pants, and toilet paper. Do you know how embarrassing it is for a 20-something person to have an accident? You feel like you never want to go out in public again and just want to isolate yourself. Now I can go for a run or take a road trip without being paralyzed with fear.

“It’s better to keep Crohn’s to yourself.”

I know how hard it can be to talk about having IBD, but staying silent is stressful. If you’re able to open up to friends, family, and co-workers, you’ll feel so much better because you won’t have to worry about hiding it. Sharing your story and letting others know what you’re going through also has the potential to make life better for everyone with IBD. I once got into a fight with a flight attendant because I was in the middle of a flare and desperate to use the bathroom as the plane was about to take off. If he had understood more about IBD, he would have known that waiting until the plane reached cruising altitude was not an option.

Talking about IBD is also key to influencing legislators who have the power to enact laws that help you get the best care. Right now many insurance companies require that you try a series of cheaper treatments that don’t help before they’ll pay for more expensive options like biologic drugs. This process, known as “step therapy” or “fail first,” puts us at risk by delaying the right treatment, which can be dangerous.

Many states have recently passed step therapy reform acts, and I’m hoping that California — where I live — will soon join them. I’m also optimistic that federal legislation called the Safe Step Act will be passed in the not-too-distant future.

I hope that by talking to lawmakers, which I’ve done during various advocacy events, they’ll gain a better understanding of why these changes are so important. It’s a pretty amazing feeling to realize that simply sharing your story has the power to impact change on a local and federal level and will have lasting benefits for the IBD community.

By Christine Morris, as told to Susan Bernstein

I was 16 when I was diagnosed with Crohn’s disease. It was 2004. I was just a very sick

kid. Even as a baby, my mom told me that I had to be on soy formula because I was lactose intolerant. When I was older, doctors told my parents I had cyclic vomiting syndrome. This was a permanent thing where my diaphragm was hyperactive. If I throw up more than once, I can’t stop. I would just go on and on until there was nothing in my stomach anymore. I had to get fluids at the emergency room. I learned as an adult that I can get ahead of this as it starts. I take a drug called Zofran. It makes me drowsy, but the good thing is that it dissolves under the tongue, so you don’t vomit it back up.

Alien in My Stomach

It all started with those warning signs. Doctors said, “Well, maybe she is just more susceptible to catching stomach bugs.” At 13 or 14, I suddenly took a turn for the worse. I developed an intestinal blockage. Crohn’s had been doing damage to my small intestine for years. I missed almost a whole year of classes during my sophomore year of high school. I had vomiting episodes and severe abdominal pain.

We joked sometimes that I had an alien in my stomach, because it would rise and fall so heavily. I wore sweaters and sweatshirts to muffle the noise it would make. Through this whole process, I saw multiple doctors and had multiple tests, including colonoscopies and endoscopies that didn’t find anything. It was terrible.

Doctors would say to me, “Well, maybe it is psychological.” At that age as a girl, they were always thinking that my symptoms might be caused by an eating disorder. This condition can stunt your growth, too. I lost so much weight. I was unable to absorb any food or nutrients. I wasn’t developing at the normal rate a teenage girl should. I looked 12 at age 15.

At 15, we finally decided to try to see a pediatric gastroenterologist in Atlanta. I grew up in Rome, GA. Unfortunately, I didn’t have access to high-quality care there. With a more severe disease, we wanted to be seen by a specialist at a research hub. We drove an hour into Atlanta to see a specialist at Children’s Healthcare of Atlanta at Scottish Rite. He was one of the greatest doctors I ever had and he knew Crohn’s so well. He looked at my hands and said, “Have you ever noticed that your fingernails are shaped like the back of a spoon?” He called this clubbing.

Surgery, and an Answer at Last

Eventually, the only way to definitely learn what was going on was to do exploratory surgery. In August 2004, they found exactly where my Crohn’s damage was located. It was just above the ileum, so too far in to be seen on a colonoscopy and too far down to be picked up by an endoscopy. Apparently, this had been developing for so long that inflammation had destroyed a whole section of my small intestine.

I was relieved to get a diagnosis. The big thing you want when you go through all of this is to have an answer for your symptoms and a plan. When I woke up after the surgery, they said, “You definitely have Crohn’s disease. It’s a permanent, chronic illness.” They did a resection of my intestine while I was in surgery, and they thought that hopefully, my disease would stay in remission with medications. It did for 6 years. Then, it came back with a vengeance in 2010. I had flaring, active disease again in my large intestine.

Play the Cards You’re Dealt

Crohn’s can appear anywhere in your digestive tract from your mouth to your large intestine. Colitis is only in your colon. The unfortunate thing about Crohn’s is that no amount of resecting can cover it. It was at that point when I realized the unfortunate cards I had been dealt. I realized that it would always be difficult for me to keep my Crohn’s under control.

Between 2004 and 2014, I was on seven different medications. At first, I only had to take an anti-inflammatory and an immunomodulator [drugs that treat the immune system to control Crohn’s flares]. That worked for 6 years. When I flared again, they put me on high doses of prednisone, a steroid: short bursts, but often. Then, I switched to biologics when nothing else would work. They worked longer, and initially, they were more effective. I have taken literally everything.

Reach Out for Help

What did I wish I knew when I was younger? I definitely wish I had known there were resources available to help us understand Crohn’s and what I was going through. Obviously, the Crohn’s & Colitis Foundation of America (CCFA) does all it can to get information out there for patients. My family and I had no idea what this disease was or where to go for help. We never knew anyone else who had Crohn’s. We found out later that a cousin on my dad’s side had Crohn’s, too, but nobody else in my family had it.

Another thing I wish I knew was that, maybe for far too long, we thought the right doctor to see for my symptoms was my pediatrician. I really needed to see a gastroenterologist, because they specifically treat the GI system. Some of these doctors specialize in inflammatory bowel disease (IBD). I wish I had known that you could see someone who was also involved in Crohn’s or IBD research. They could have told us about clinical trials of new treatments that are not available to the general public yet but could be available for you if you have Crohn’s. These are medicines that can save lives.

I wish I had known that there were other resources to help people with Crohn’s. It was a very big issue for me that I was missing so much school. My school didn’t understand why I was missing classes. My dad had to go to get doctor’s records and letters to prove that I was out of school for legitimate medical reasons.

25 Bathroom Trips a Day

By 2010, I kept trying different biologics. I was learning to do home injections. I kept telling myself, “Well, it’s better than the alternative! Better than experiencing all of my symptoms.” Eventually, those drugs weren’t working either. I was going to the hospital more and more for vomiting, pain, and incontinence. These were signs that something was amiss. I had loose, bloody stool. I was running to the bathroom 25 times a day. I could not even finish a meal without running to the bathroom.

In 2014, I made the decision to do a diverting ileostomy [surgery to steer waste to a pouch instead of the inflamed gut]. They thought that giving my colon some bowel rest would help. I did that for a year, and I didn’t get better. My disease was severe. So, in 2015, I had permanent ileostomy surgery. They removed my large intestine and what’s called “the stump,” which is basically the anus. I don’t have a large bowel anymore. All stool comes through my small intestine to an ileostomy bag.

Thankfully, I worked for 9 years at CCFA. They were very understanding about patients working for them and had good insurance. I had to take short-term disability and max out my FMLA [Family Medical and Leave Act] leave. They were able to work with me, and I was able to keep my job. Recently, I was laid off due to the pandemic, and I now work at Habitat for Humanity.

Don’t Overlook Your Mental Health

On the first day of my current job, I had so much scar tissue built up that I had a severe vomiting episode. On my first day! I had to have surgery to remove scar tissue. Thankfully, with this job, I was open and honest with my boss about my Crohn’s disease. She was able to give me leave time in advance so I could get better. I love my job.

If I could give advice to someone who is first diagnosed with Crohn’s, it would be this: Have a support system, whether that’s your parents, a friend, or someone else. You will need people who can drive you to the hospital or for tests.

Crohn’s can be mentally taxing as much as physically taxing. Don’t underestimate your mental health needs. Get help or medication if you need it. I learned this the hard way. When I had surgery, they prescribed pain medication, which you need at first. But these drugs can cause depression, too. You don’t feel the physical pain for a while, but when you come off those drugs, you can feel so low. Trying to avoid that situation whenever possible helped me. I also take an antidepressant. Talk about all of your options with your doctor. Over-the-counter probiotic supplements also helped me, and I wish I had known this earlier.

One thing I’ve learned is that you must look at the whole body when you’re treated for an autoimmune condition like Crohn’s. My condition is more systemic. I have become very interested in the connection between the brain and the gut. They’re clearly connected.

Stress can affect your gut health. My Crohn’s flares happened to me during stressful times in my life, such as when I was graduating from high school and college and planning my wedding. Don’t overlook your mental health.