Time and time again you hear it—are Irritable Bowel Syndrome (IBS) and Inflammatory Bowel Disease (IBD) the same? Or people say—I know someone who has IBS, that’s the same as Crohn’s, right?! I’m here to help set the record straight. Although the two disorders share similar names, they have distinct differences.

When you hear of IBS it’s classified as a functional gastrointestinal syndrome, which means there is some type of disturbance in bowel function. BUT—it’s not a disease. Syndromes are defined as a group of symptoms, in this case abdominal cramping, bouts of diarrhea, and constipation. IBS does not cause inflammation; patients’ digestive tracts show no sign of disease or abnormalities.

IBD (Crohn’s and Ulcerative Colitis) cause destructive inflammation and permanent harm to the intestines and bowel.  Crohn’s and UC are characterized as autoimmune diseases. For instance, IBD can affect not only the intestines, but can also cause arthritis, anemia, blood clots, malabsorption, weight loss, eye conditions…and the list goes on. Crohn’s can affect anywhere along the gastrointestinal  tract (from the mouth to the anus), and can result in strictures (narrowing parts of the intestine), fistulas (abnormal connections between different organs or sections of bowel), and abscesses (collections of pus) inside the abdomen or around the anus.

Since my diagnosis of Crohn’s in 2005—aside from the chronic inflammation in my small intestine associated with flare ups, I’ve dealt with anemia, malabsorption, osteoporosis, and malnourishment. In 2008 I had an abscess the size of a tennis ball in my small intestine, luckily it was alleviated by IV medication.

While IBS causes discomfort (and I’m not trying to discredit the pain people feel)… IBS rarely results in hospitalizations and treatment does not involve surgery or powerful medications, such as steroids and biologics.

According to the International Foundation for Functional Gastrointestinal Disorders, IBS affects at least 10-20 percent of adults in the U.S.—mostly women—and is second only to the common cold as a cause of people missing work! Surprisingly, it’s one of the top ten most frequently diagnosed conditions among physicians in the U.S.

Just like with IBD, the cause of IBS is still unclear. Some believe stress aggravates the condition. While some consider it a psychological condition, it is not. People with IBS also tend to have irregular patterns of colon motility (meaning that the nerve endings lining the bowel are unusually sensitive, and in turn make the gut more active).

Most people with IBS will never develop IBD. But, a person who has been diagnosed with IBD may display IBS-like symptoms. Both are considered chronic conditions, meaning the symptoms are ongoing.

All in all, it’s all about quality of life—and neither IBS nor IBD are a walk in the park. Both have their share of social stigmas. Before you associate the two as the same, be mindful of your words and how they impact your friend or family member who lives with either on a daily basis.

For further information, call the Crohn’s and Colitis Foundation’s IBD Help Center: 888.MY.GUT.PAIN (888.694.8872).

This week we are going to change things up a bit with a new, monthly Q&A feature. I am partnering up with an Instagram account known as “our_life_with_crohns”—the social media account is a great resource and allows you to interact in real time with those who are searching for a diagnosis and those who live with Crohn’s and Ulcerative Colitis.

Thank you to “our_life_with_crohns” for allowing me to respond to questions posed on the site. Before we get started—I want to remind my readers, I am not a medical professional, I don’t pretend to be. My responses are all from my personal experiences, advice and recommendations from doctors I have seen and the research I’ve discovered since my Crohn’s diagnosis in 2005.

Q. Hi! I am currently in the midst of struggling to get a confirmed diagnosis for Crohn’s from my doctor and I’ve been on prednisone for eight weeks and have felt amazing relief and would consider myself in remission, as I experience essentially zero symptoms. He wants to do a capsule endoscopy to confirm the Crohn’s now, but I’m worried it will show up negative if the prednisone has taken care of the inflammation and put me in remission. Will the endoscopy show Crohn’s or will it come back negative?

Natalie: Getting a diagnosis is a difficult part of the journey and so is being on prednisone for eight weeks. While that steroid is excellent at combating inflammation in the body—it’s not a long term solution for healing or for controlling your health issue. Long term steroid use is incredibly detrimental to the body. Unfortunately, many Crohn’s and UC patients are repeatedly put on them—but over time they take a toll. To give you an idea—I was diagnosed with Osteoporosis this year—the longest I have ever consistently been on steroids is three months. I would be hesitant to throw around the word “remission”—you may have a false sense of hope from the steroid, and the relief could be temporary. As far as the capsule endoscopy—I would also be hesitant to undergo that test. While you may be feeling better and your inflammation seems to be down, there is always a chance the capsule could get caught along the way and need to be surgically removed—especially since your diagnosis and health is a bit of mystery right now. In my opinion, your best bet is an abdominal CT scan and a colonoscopy. The doctor can biopsy cells during the colonoscopy and then you both will have a better idea of what you’re going up against.

Q. Yesterday I went to my GI and he set me up for my fourth colonoscopy and endoscopy next month. He is doing it to determine if I’m having some of my intestine taken out—and moving Remicade up to six weeks instead of seven. My question is—what should I expect from the colonoscopy? I have been lucky for five years to have nothing removed, but he said I’m really severe.

Natalie: In hearing this I’m curious about when your previous colonoscopy was? In order to determine if I needed surgery last summer, I underwent an MRA (Magnetic Resonance Angiogram) while I was admitted—rather than a colonoscopy. A CT Scan showed a bowel obstruction and then they performed the MRA to see if surgery was necessary a few days after IV steroids and antibiotics. The MRA was able to show how much inflammation and narrowing I was dealing with throughout my small intestine. I went a decade without surgery. The thought of it petrified me. While it’s daunting and not easy to endure—it will give you a fresh start and it’s the best thing that ever happened to me in regards to treating my disease. The 18 inches of diseased intestine would have repeatedly caused me pain and bowel obstructions, it’s great to know that while it’s not a cure, you get the damaged part of your digestive tract out of you (at least for the time being!) I always thought I was lucky prior to surgery—I felt the luckiest, after.

Q. I just started Humira and completed my second dosage on October 7^th. After the first initial dosage, I had extreme diarrhea after eating. I called my GI because it wasn’t normal for me. He told me it was too early for my body to react to the Humira. After the second round of shots, I’ve thrown up four times, still have diarrhea and a low grade fever. Fever has come down, but still super bad. Not sure it it’s just a really bad flare or a bad reaction. I have other symptoms as well. However, my GI isn’t much of a help.

Natalie: That’s too bad your GI isn’t being more helpful. I have been on Humira since 2008. My reaction to the initial loading dose was terrible. I didn’t have enough energy to go up the 13 stairs in my apartment, I was going to the bathroom non-stop and it looked like a weird black-tar substance. My Mom and I were really concerned and we weren’t sure if my body was responding how it should. Whenever you experience a side effect that alarms you—you can contact a registered nurse on staff at 1-800-4HUMIRA (1-800-448-6472). They like to keep track of all side effects so they’re on record and can provide you great peace of mind. Luckily, after about two months—I didn’t experience any of those symptoms. In the past 8 years, when I’m ready for an injection or after I give myself one—I experience no side effects whatsoever. Think of the loading dose as giving yourself 4x the normal dosage of medication—that’s a lot for your body to take on and get acclimated to. Every person responds differently the first time they take a biologic. If you continue to notice the fever, diarrhea, and vomiting I would continue to alert your doctor and also get a second opinion if he/she is not responding to your needs. The loading dose is the most difficult part of Humira to go through. Click here to read a previous blog post with tips to ease the pain.

Q. I have a new boyfriend and he knows I have Crohn’s but he doesn’t really know what it is. I have to admit I’m a bit nervous about explaining it to him, but I also don’t want him to look it up. Does anyone have any advice?

Natalie: I understand the apprehension, but this should be an early conversation with your significant other. You’ll quickly come to find out whether he has what it takes to be a compassionate, patient, and thoughtful partner as you battle your chronic illness. When you share the news it will shed light on his character and provide great perspective. If anything—think of this as an advantage. You can weed out the guys who don’t genuinely care about your health and well-being easily. While you may assume every friend and significant other will handle the news a certain way, each person deals differently. It can be disheartening when you come to realize that the person you really care about is absent and nowhere to be seen when you’re in a hospital bed fighting a flare, facing surgery or dealing with a new diagnosis. One of my ex-boyfriends never visited me once when I was initially hospitalized and diagnosed and broke up with me while I was being wheeled out to my parent’s car to go home. Another ex told me gas prices were too high and he preferred to fish, instead of coming to visit me when I was facing surgery with an abscess. In the moment—it hurt, but looking back I feel so grateful I was able to see that about their personalities THEN and dodge the bullet(s). When I met my husband and he embraced all my hardships and hasn’t left my side for one day or night during any of my hospital stays—I was blown away…and still am. You need to find someone who understands your health struggles, someone who is willing to be there through tough days, but also reminds you that better “feel good” days are ahead. If he wants to look up more information online—that is normal, and I wouldn’t shy him away from doing that—it’s good that he wants to educate himself. But, share how your personal disease process is—in comparison to what he may read. Every person’s disease is different. You got this! Good luck!  You’ll be so much more at ease when that conversation is behind you. While it’s not your identity you and I both know it’s a big part of who we are!

Q. Can someone tell me what a blockage or bowel obstruction feels like? Any time I put something in my stomach that’s not liquid I get what feels like bad trapped gas pains that’s between my middle rib area to my belly button. The only way I am able to get it to pass is taking 2-3 GasX tablets. I can go number two but it’s really hard to get out even after using stool softeners and laxatives because I can’t go. I have stomach pain, I’m nauseated but I’m not actually throwing up.

Natalie: Hate to hear you are going through so much pain—I know how miserable it is when you can’t eat without being in pain. That being said—a bowel obstruction is not something to be taken lightly and it’s such an unbearable pain that you almost have no choice but to go to the ER when you have one. By the sounds of what you’re describing it sounds like you’re in a flare up state and that your intestine is inflamed has stricturing that is making it difficult for food to pass through for proper digestion. I’ve had several bowel obstructions and they all present similarly. Anytime I eat I get a wave of nausea and it starts as a dull gnawing pain throughout my abdomen. The pain does not subside and carries over from day-to-day. When I notice this going on I put myself on a liquid diet at home to rest my bowels. At the peak of it all—I usually get to be in so much pain that I’m practically blacking out. The pain goes from gnawing to stabbing pains—pain level of a 10. The last two obstructions I had, I lost all feeling in my arms and legs and don’t even have memory of some things. I almost go in a state of shock from the pain and I’m unable to stand up straight. They can’t get the IV in me fast enough when we arrive to the ER, I’m always rushed back immediately—even when the ER is completely full. I always vomit and sometimes I have a fever. I’ve never been instructed to take any type of GasX tablets or laxatives—if anything I’ve always heard to abstain from using them. I would make sure your doctor is aware of what you’re going through. Also make sure you get medication that properly manages your disease process so you can have an improved quality of life.

Have a question about Crohn’s that you’d like some advice about? Email me at lightscameracrohns@gmail.com.

Inspiration is all around us—it’s not hard to find if you’re open to looking for it. While Crohn’s disease and chronic illness can be incredibly isolating and debilitating, sometimes the best medicine is to open our eyes to the world around us and recognize that many people (more like the majority) are fighting their own battles—whether visible or not.

This past week was a monumental milestone for my close friends, Joe and Julia. Their baby girl, Jade, finally left the hospital after 229 emotional days and headed to a rehabilitation bridge hospital to seek further treatment. Since Jade entered the world February 25, 2016 she’s shown not only myself, but family, friends, and strangers around the world, what it means to beat the odds and be strong.

Doctors diagnosed Jade with an incredibly rare congenital heart defect known as Pulmonary Atresia with Ventricular Septum Defect, while in utero. The condition is listed under Tetrology of Fallot. Babies born with this oftentimes have a bluish skin color, because their blood doesn’t carry enough oxygen, they have trouble breathing and eating, are extremely sleepy, and their heart requires surgical repair.

When you look at Jade, who tips the scales at only 12.5 pounds, and she’s able to muster up the strength to fight after enduring three open heart surgeries, a g-tube, a trach, countless tests, and prods and pokes…it shows there’s more to life than just your personal pain and struggles. Watching her brave through the unthinkable and overcome each obstacle is proof that miracles do happen. She’s shown us that just because one day is difficult, doesn’t mean there’s not promise in the next.

Seeing our dear friends experience the highs and lows of round-the-clock medical care for their child and how they manage to stay positive, hopeful, and keep their faith close to their hearts has been awe-inspiring to the say the least.  Nobody knows what cards they will be dealt when it comes to the health of their child or themselves. Often this can be taken for granted until your daily battles become your new normal and you have no choice but to tread on and discover how to wade through the unknown waters before you.

Jade has spent every moment of her existence under observation in a hospital setting. Unlike healthy babies who head home a couple days after birth and celebrate milestones in their nurseries and at home—she hasn’t had the chance to breathe fresh air and wake up in her beautiful sunshine filled nursery yet. Jade’s life has a unique path, but time and time again she’s shown just how resilient she is.

Even as she works on her rehabilitation—there’s no telling what her future holds. In a few months she will need to undergo a full heart repair. While no person or family should have to endure such hardship, this is their reality. As my Godmother always says, “God gives his toughest lessons to his greatest teachers.”

Jade, Joe, and Julia are a reminder to us all of how precious life is—that you never know what tomorrow brings and that we all have two choices—to think woe is me and wallow in our pain and struggles or face them head on with everything we’ve got.

You can support Jade by donating to her Go Fund Me page:

https://www.gofundme.com/prayersforbabyjade

Sending a card or letter to her and her family:

Prayers for Baby Jade
PO Box 1475
Fenton, MO 63026

Following Jades’ story on Facebook:

Prayers for baby Jade

…and by living each day with a “Jade state of mind.” This bad ass baby girl refuses to give up. She knows she has a lot to fight for and in turn she’s proven that grown adults and kids alike can look up to someone who hasn’t even taken their first steps yet. I love you, Jade—you are the toughest baby girl I know.

Well he did it. My baby brother ran the Chicago Marathon to spread awareness about Crohn’s disease. Even though I was there on the sidelines yesterday watching in amazement as he ran alongside 40,000 other brave marathoners, it still feels like a dream and is incredibly humbling. Not many people can say their sibling endured months of grueling training and hours of pushing their body to the limit… all to prove a point and make a difference.

In the days leading up to the race, I felt nervous FOR him. The day of the race—I was overcome with emotions (and not just because of the pregnancy hormones!) My brother—who has witnessed me battling a chronic illness for more than 11 years, who’s held my hand countless times while I laid in hospital beds and offered me comfort during difficult days… took those experiences and used them all for inspiration. While I ate breakfast with my family at a restaurant an hour before the race, I said a prayer for Greg and I was overwhelmed with emotion at the table—just thinking about all he was about to endure made my mind race and the tears flow.

I texted Greg: “Just said a prayer for you and it made me cry because I can’t believe you are doing this for me. Love you. You are going to be amazing.”

He responded: “I prayed and cried too. Anything for family.”

We were able to track him down at the 3 mile, 12 mile, 21 mile and 25 mile spots. Each time he passed us and slapped my hand was incredible. The hardest part was when he texted me “Hurting” at Mile Marker 15, it hurt my heart to know he was struggling on my behalf. At Mile Marker 25 we knew he was in a ton of pain. The crowds around the course were incredible—it’s amazing to see the support of the spectators and the thousands of focused runners on the race route about to cross the finish line. When we saw him that time—he came over to us, was crying and slapped my hand. I’ve never felt more proud of him in all my life. He ran the Chicago Marathon in 4 hours and 24 minutes.

The best part of all is that he did this out of the goodness of his heart. We never discussed the Chicago Marathon or him spreading awareness about Crohn’s. One day this past spring he nonchalantly told me what he was determined to do.

I think after he traveled to St. Louis last summer for my surgery, and saw firsthand how bad Crohn’s can get, he realized he wanted to do everything in his power to give hope to the 5 million people worldwide who battle this every day. Safe to say, Greg provided more than hope. He became a source of inspiration and motivation to everyone in the IBD community—and all our family and friends.

This incredible act of kindness has a ripple effect. During the race Greg’s wife was in line to use the bathroom—a girl came up and said “I hate to do this, but I have Crohn’s disease and really need to go.” Annie couldn’t believe it—she said, “My husband is actually running right now for Crohn’s disease! Please go right ahead!” While I stood at Mile Marker 25, I cheered on all the runners with “Team Challenge” shirts and the girl in front of me turned around and said, “I work for the Crohn’s and Colitis Foundation” in D.C.” I let her know I’m a fellow Crohnie. Like I’ve said in a previous article, I don’t believe in happenstance.

For those fighting chronic health conditions, for those reading this from their hospital beds, for those wondering when they’ll ever get relief—have faith there are people like my brother who are our biggest cheerleaders. You are not alone in your fight, some days will be rougher than others, but remind yourself that you’ve overcome every. single. flare. You have outdone your disease before and you’ll do it again—and the people in your support network will constantly lift up your spirits, surprise you, and remind you’re not in this alone.

A big THANK YOU to all the family members, friends and strangers who helped Greg raise nearly $2,700 dollars for the Crohn’s and Colitis Foundation! Greg, I’ll never forget what you did for me—and will use that amazing marathon experience as a source of strength for the rest of my life. Congratulations to all the runners who completed the race—especially those who focused their efforts on raising money and awareness for causes near and dear to their heart.

When you think about pregnancy—it’s truly a beautiful miracle and a bit of a mystery. It feels like a coming of age—your life and body transform to create and foster the growth of a living human being that you immediately fall in love with. Prior to experiencing this, I wasn’t able to grasp or realize how magical and worrisome this time in life can be. For those who battle autoimmune diseases and medical conditions, there’s an extra sense of wonder. With Crohn’s, whether you’re pregnant or not, the disease presents differently in every person. So when you’re pregnant, you can imagine how much more complicated that can feel for the patient and even the doctors.

Areas of wonder include: the long term side effects of medications, how past and current inflammation and disease activity will impact the pregnancy, and what happens if you go through a flare or need to deliver early, etc. One of the most common pregnancy issues in Crohn’s patients is preterm labor and low birth weight. My high risk OB told me that if a woman is going to flare during pregnancy it generally happens 25-30 weeks in, which is obviously a very critical time. Following delivery, some Crohn’s patients flare 2-4 months after the baby is born as your body gets reacclimated to life without the pregnancy hormones. In my mind—if either is going to happen… I’m praying it’s when the baby is already here so that I can endure the flare on my own and not have to worry about harming the baby in any way with IV medications.

When I was a few weeks into my pregnancy I came across a tweet from the Crohn’s and Colitis Foundation about a pregnancy study. I clicked the link, checked out the study, and emailed “MotherToBaby” without hesitation. The study is observational and is conducted by the Organization of Teratology Information Specialists (OTIS) and coordinated by the University of California, San Diego. OTIS is a non-profit organization that is dedicated to learning about the safety and effects of medications used to treat diseases such as Crohn’s during pregnancy. MotherToBaby is considered the most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding.

By participating in the long-term study, I have the opportunity to interact with expert staff who have already provided me with support during my pregnancy, while also playing a key role in helping researchers discover more about the safety of medication during pregnancy and in the future. During my first phone interview I was asked if I would want to be tracked for one year or five. I chose five years because I feel that will provide a clearer picture of how my baby boy responded to being in utero while I gave myself Humira injections and took four Lialda pills a day. It gives me such peace of mind to know that he will be looked at once a year by a doctor (free of charge) until he’s in kindergarten to see if there are any areas of concern.

Enrolling in the study is super easy—it involves phone interviews during pregnancy and after birth, as well as the release of medical records from the pregnancy and the pediatrician. The doctors who participate in the study do home visits when your baby arrives, so you don’t even need to leave your house to receive medical attention.

If I can help provide insight into how pregnancy and medication coincide with one another, sharing my story is more than worth it. It’s comforting to know I am one of 100,000 women right now who participate in this study to shed light on birth defect prevention regarding disease, medications, and vaccines during pregnancy.

Interested in learning more? Call 1-877-311-8972 or email MotherToBaby.ucsd.edu to get involved.