Pregnant? Interested in Furthering IBD Research? Check out the Melody Trial

One of my biggest fears as a mom with Crohn’s disease is that one day my children will inherit the disease. It’s a worry that crosses my mind more than I would like to admit. Whether my son tells me his tummy randomly hurts or if my daughter seems to have several number two diapers one day, my mind instantly goes to that thought. I know I’m not alone in feeling this way. When it comes to research about pregnancy and IBD, the information is starting to come to fruition, but is lacking. There is still so much gray area. Sinai Team

UMass Medical School and the Icahn School of Medicine at Mt. Sinai are on a mission to improve the health potential of babies born to IBD moms. Their research team is launching a clinical trial for 200 women in the United States right now that involves diet intervention in the third trimester of pregnancy. The trial is called the MELODY Trial (Modulating Early Life Microbiome through Dietary Intervention in Crohn’s disease).

Barbara Olendzki, RD, MPH, LDN is an Associate Professor of Medicine and the Nutrition Program Director of the Center for Applied Nutrition at the University of Massachusetts Medical School. Olendzki, Barbara headshotShe is involved in research and clinical care, and she created the IBD Anti-Inflammatory Diet which is being investigated through the MELODY Trial. Barbara explains how through the MELODY Trial, the team is aiming to intervene in the transmission of a pro-inflammatory microbiome from women with Crohn’s to their babies.

“Accumulating evidence suggests that maternal health and diet during pregnancy and early life have an impact on the baby’s microbiome composition and immune system development, with long-term health consequences, including establishing predisposition to Crohn’s disease and other immune-mediated diseases. By modulating the maternal microbiome during pregnancy through diet, our team of researchers hope to promote healthier immune system development in infants born to mothers with Crohn’s disease.”

Why the microbiome plays a key role

The microbiome refers to the communities of microorganisms, including viruses, fungi, and bacteria, living on and in the human body. Recently, altered microbiome in early life has been linked to the risk of developing asthma, eczema, allergy, autism, type 1 diabetes and other myriad of immune-mediated diseases.  Barbara says the team’s preliminary data demonstrates that babies born to mothers with IBD have a higher abundance of pro-inflammatory bacteria and depletion of beneficial bacteria for up to at least 3 months of age, compared to controls.

“Babies born to mothers with Crohn’s Disease are at a substantially increased risk of developing the disease. Specifically, compared with individuals with no family history, the risk of Crohn’s in first degree relatives of a patient with Crohn’s disease is ~8-fold higher.”

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Babies born to mothers with IBD have less diversity of beneficial microbiome than healthy controls, and higher levels of calprotectin, an inflammatory marker common in Crohn’s disease.

How the MELODY Trial will work

The MELODY Trial will test whether a non­invasive diet intervention implemented during the third trimester of pregnancy can beneficially shift the microbiome in patients with Crohn’ s disease and in their babies. This study’s goal is to determine if manipulation of the mother’s microbiome, through diet, would benefit their baby. The diet aims to promote a healthier immune system during a critical time of immune system development. theMelodyTrial_Color

The study targets the third trimester specifically, as this is when certain changes occur with mom and baby to get the baby ready for birth. The baby is thought to share more of the mom’s microbiome at this time, making the final 12 weeks of pregnancy the most opportune time to beneficially influence the baby’s early formation of their microbiome.

Diet is a wonderful way to change the microbiome! Specifically, the IBD-AID (IBD-anti-inflammatory diet) incorporates the avoidance of certain carbohydrates and emphasizes the importance of modifying fatty acids. The IBD-AID also supports inclusion of fruit and vegetables (to achieve optimal nutrient intake, targeting phytosterols, antioxidants, and other plant-based anti-inflammatory components). The diet is presented in three phases, according to each patient’s tolerance, digestive and absorptive capacity,” said Barbara.

In addition, the IBD-AID includes foods with pre- and probiotic properties. Prebiotics are foods (typically nondigestible fiber) that favor the growth of beneficial bacteria colonizing the colon. Probiotics include a variety of fermented foods containing live active bacteria. Each woman who chooses to change their diet receives counseling from nutritionists in the study. pregnant_woman_3

How to enroll and participate in the MELODY Trial

The research team is looking for both healthy controls and women with Crohn’s disease. The MELODY Trial is a national study; anyone living in the continental United States can participate. Whether you’re on medication, in remission, or experiencing active disease—this study is open to everyone.

The study will include 200 women over the next two years. If you are not yet pregnant but are planning a pregnancy, you can also get in touch with the study team now, and then start participating once you are pregnant.

Women who are interested in participating should contact the study team at themelodytrial@gmail.com or by calling 347-620-0210. You can also register to be contacted by our team by filling out this form: https://www.umassmed.edu/nutrition/melody-trial-info/

Participants will be compensated $200, which is paid in installments throughout the study period. Participation begins in the third trimester of pregnancy and involves stool, saliva, vaginal swab, cord blood, and breast milk sample collections as well as health history questionnaires and diet assessments. There is no cost or travel required.

“We will send participants thorough instructions about how to collect and ship each sample. We also provide all the tools needed to collect and ship samples. All stool, saliva, breast milk, and infant diaper samples will be collected at home by participants. Vaginal swab and umbilical cord blood samples will be collected by doctors, midwives, or other trained health care professionals. We will coordinate directly with your provider, or we will give you the tools and instructions needed to coordinate with them directly.”

From one IBD mama to another: My call of action to you

As a mom with Crohn’s who has been pregnant three times and who has two kids ages 2.5 and 10 months, I can’t reiterate enough the importance of participating in research like this.

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Photo credit: Jennifer Korman Photography

Not only are you benefiting your baby, but you’re contributing to research that helps paint a clearer picture of what we can do to lower the incidence of IBD in future generations. Results from the study are expected to be complete and ready for sharing in three years. Let’s join together and help push this research along so future women and families have greater peace of mind and understanding as they bring life into this world.

 

An Evening of Hope: What charity events mean as an IBD patient

There’s something special about sitting in a room with hundreds of people, all with the same goal and mission in mind—to fundraise and advance research for IBD. Over the weekend, my husband and I had the opportunity to attend the Mid-America chapter of the Crohn’s and Colitis Foundation’s “Evening of Hope” Gala in St. Louis.

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Christian and I both battle Crohn’s disease. 

As a patient, it’s difficult to articulate how it feels to attend charity events that revolve around IBD. It’s emotional. It’s uplifting. It’s bittersweet. It’s empowering.

In my 14-plus years living with Crohn’s, I spent so much of that time dealing with my disease in private—never wanting to be judged, never wanting sympathy or pity. When I started sharing my story publicly five years ago, and connecting with others who live my reality, a whole new world opened up. I realized how much support is available and how close knit the IBD community…or should I say family, really is.

The Gala was sold out. Last year the event raised $300,000—this year the hope was to meet or exceed that! That’s from one event in St. Louis—last year the Crohn’s and Colitis Foundation raised more than $80 million through memberships, fundraising events, sponsorships, and other programs.

My favorite moment of the night was listening to a fellow IBD mom and pediatrician speak about her journey with ulcerative colitis and how she’s managed to rise above and experience so much beauty in life, despite her diagnosis. As she spoke, a slideshow of photos of her three sons, traveling the world with her brought happy tears to my eyes. Her remarkable story and experience is one of many that serves as a reminder that just because you have IBD doesn’t mean it needs to hold you back from your dreams. She was diagnosed sophomore year of college, and still managed to become a doctor and have a family. B555E291-A329-4FF8-B7B3-AD7648C43500

Connecting with fellow friends, event organizers, and patients in person is a joyful occasion. I especially enjoyed the opportunity to connect with parents of children, teens, and college students who are taking on the disease. It’s my hope that events like this show them all the exciting research and hope that’s on the horizon for the future of care and treatment for IBD. Events like this are a reminder that it’s not a matter of “if” there will be a cure for Crohn’s and ulcerative colitis, but when.

IMG-3726If you’ve never attended a Crohn’s and Colitis Foundation event for your local chapter—whether it’s a patient symposium, an education event, a walk, or a Gala, I highly recommend you check them out. While it’s great to connect on social media or over the phone, nothing compares to physically being in the same room with people who are passionate about the same cause, who understand your reality, and are driven towards the same mission as you.

 

 

Iron Deficient Anemia: What IBD patients need to look out for

I’ll never forget what it felt like to faint on the teacher’s desk in front of the entire class in fourth grade. As you can imagine, it was quite the spectacle. From a young age, I dealt with dizzy fainting spells. If I was outside at a carnival or festival and it was too hot, I would black out. To this day, if my showers are too hot and I haven’t eaten, my vision can go blurry and a loud “shhhh” sound blasts in my ears. I always have to be extra careful not to stand up abruptly. I was the girl in high school who carried glucose tabs when I got too weak.

Little did the doctors and I know in fourth grade that down the road when I turned 21 I would be diagnosed with Crohn’s disease. To this day I wonder if my anemia from a young age was a sign of what was to come. Upon my diagnosis, my hemoglobin plummeted to seven. To give you an idea, most people can’t function and are in dire need of a blood transfusion at that point. The general rule of thumb when it comes to hemoglobin is 13 and above for men and 12 and above for women. IBD patients fall into the same expectation as “normal” people when it comes to these ranges. For as long as I can remember, I’ve celebrated being in the double digits—a 10 is often hard for me to come by.

For those who don’t know what anemia is, it’s marked by a deficiency of red blood cells which means you have less blood to carry oxygen to the rest of your body. When you have a low hemoglobin you often feel extreme fatigue, weakness, experience chest pain or shortness of breath, have a fast heartbeat, headache, dizziness and lightheadedness. FullSizeRenderFor many of us in the IBD community, we deal with what is called Iron Deficient Anemia or IDA. With Crohn’s and ulcerative colitis, long-term irritation and inflammation in our intestines can interfere with our body’s ability to use and absorb iron properly. IDA is considered an extraintestinal manifestation of IBD.

I’ve teetered back and forth with IDA for as long as I can remember. And the same can be said for much of our community. According to the Crohn’s and Colitis Foundation, 1 in 3 people with Crohn’s disease or ulcerative colitis has anemia.

Causes for IDA:

  • Low iron
    • Inflammation in your intestines can interfere with your body’s ability to use or absorb iron.
    • Blood loss from intestinal bleeding—oftentimes you can be bleeding in your stool, and not be able to see it.
    • Poor absorption of vitamins and minerals, like vitamin B12 or folic acid.
    • Medication

Treatments for boosting your hemoglobin and Iron Levels:

  • Iron supplements—I’ve taken oral iron for years. I currently take a prescription prenatal vitamin with iron, calcium, folic acid and vitamin D, daily.
  • IV iron for those with active IBD, or for those who cannot tolerate oral iron.
  • Get your IBD under control with the right medication
  • Blood transfusions in severe cases.

It’s important you communicate how you are feeling with your gastroenterologist, so they know if you are struggling. All it takes is a simple blood test ordered by your doctor. The test would need to include a typical CBC along with an iron panel.

I recently traveled to Houston and participated in a videotaped round-table discussion on this topic with two physicians and a nurse practitioner. 281628.04.pngI provided the patient perspective. It was a great opportunity, but also taught me a lot about the prevalence of IDA with the IBD community, and the importance about being proactive and getting yourself the boost you need so you can feel your best each day. As a mom of two little ones, my anemia along with my Crohn’s can be a heavy burden to bear. That’s why I do my best to stay on top of managing my illness and taking all the supplements necessary to try and combat my malabsorption problems. I hope this article inspires you to do the same and realize you are never alone in your struggles.

A close-knit family: The story behind this Crohn’s blanket

There’s nothing quite like a grandmother’s love. They have a way of bringing comfort, peace, support, faith, and love to family, among many other incredible traits. IMG-2601When seven-year-old Penny was diagnosed with Crohn’s in January 2017, her grandmother, Mary, started knitting her a purple blanket. She chose the color purple because it’s not only Penny’s favorite color, but also the color that represents Inflammatory Bowel Disease (IBD).

“Penny has always had a special little gauze blanket, but I wanted to make something for her that would hopefully comfort her on days when she does not feel well,” said Mary Otto. “It’s the same idea as prayer shawl people make for those who are ill. As I knit, I pray for Penny.”

Other times, Mary says she prays for her family, for others battling Crohn’s, for those with other illnesses and diseases, and for people in general. As of now, the blanket is 44” wide and 42” long. Mary jokes she isn’t a consistent knitter and that she has a long way to go before the blanket is “adult size”. Penny currently stands 3’9”. IMG-2600

The passion project has been a special hobby between Penny and Mary. It’s Mary’s hope that in the future Penny will look back fondly on the memories and that each time she is snuggled up under the blanket she feels not only its warmth, but the warmth of her love now and always.

“I hope when Penny isn’t feeling well or in the hospital that she will find physical comfort in it (due to its weight), but also emotional and spiritual comfort because of the love and prayers that were part of its creation,” said Mary.

Every time Penny sees the blanket, her face lights up and she asks when it will be done. It’s a labor of love for Mary, every stitch made with purpose. As a grandparent, she says it’s heartbreaking to see a grandchild take on a disease like Crohn’s.

“No one wants to see their loved one suffer. I don’t like the helpless feeling when there is nothing I can do to make the situation better. I worry about Penny. I’m also concerned about her parents and brothers, because an illness like this affects the whole family.”

IMG-2918At the same time, Mary says she’s impressed by Penny and how she is taking all the baggage that comes with Crohn’s in stride at such a young age: the daily medications, the infusions, the lifestyle changes.

“Penny demonstrates so much strength, she is my little hero!” A hero who will one day hold on tightly to that blanket and not only feel the love it exudes but be reminded that she’s never alone in her struggle.

While Penny was dealt a difficult hand of cards when it comes to her health, there’s no denying she hit the jackpot when it comes to her family.

Flaring during pregnancy and after: Addy’s story and advice for IBD moms

Flare ups during pregnancy and after, starting a biologic while breastfeeding, and wondering whether one baby is enough—all experiences and concerns that have weighed heavily on 30-year-old Addy Irvine of Minneapolis. Addy was diagnosed with ulcerative colitis in May 2015. Addy and William 1 yearAddy’s son, William, is now 13 months old. This week—she shares a guest post about her journey to bring him into this world and the challenges and victories she’s experienced as a new mom with IBD. I’ll let her take it away.

Children were always a part of my plan. My husband and I knew we wanted to have children and were ready to start trying after I completed my Master’s degree. While my colitis had not been officially determined to be in remission, I was on Asacol and had not experienced symptoms for some time when my IUD was removed. After 8 months of “letting the universe decide” when to have a baby, we found out I was pregnant! Yay!

My first trimester was filled with the usual discomforts. Second trimester, you know, the one where you’re supposed to enjoy pregnancy and start feeling better? Not for me. I went through the worst flare of my life. It was easily the most miserable I’ve ever been, both physically and mentally. I had to stay home from work multiple days a week and was unable to help at home. I don’t know how I could have made it through without my husband’s support. 15 weeks

My doctors put me on oral Uceris, and when that wasn’t enough, they also put me on the rectal foam. The Uceris made things bearable, but I knew I wasn’t doing well.

I wasn’t gaining any weight despite my ever-growing belly. My friends and colleagues started noticing that I was losing weight. At first, it was in the chipper way people comment on weight loss. After a while people started to ask about it in a concerned voice.

I’d tell myself, “At least my baby is doing okay!”

By 3rd trimester, I could function normally most of the time. At my 36-week growth ultrasound, it was determined that my son had intrauterine growth restriction, and they talked to me about the possibility of induction between 37 and 39 weeks of gestation. 33 weeksAfter my second-high blood pressure reading that week, a nurse advised me to come into labor and delivery. When I arrived, I was diagnosed with gestational hypertension and started the induction process the next morning at 37 weeks.

Five days of induction later (really), my beautiful baby boy, William, arrived at 5 pounds 1.5 ounces. He was small, but healthy! After he was born, my UC got so much better until he was 2 months old when I had another flare. Suddenly I needed to care for my newborn in addition to taking care of myself. It seemed an insurmountable task. With frequent bathroom trips and intense fatigue, the newborn phase was made even tougher.

Holding on to the hope of breastfeeding

Breastfeeding was something I was really hoping for as part of my journey into motherhood. Newborn WilliamWhen William was born, I was thrilled, and so fortunate, to have a successful early breastfeeding relationship with him. When I started flaring again, breastfeeding became a significant challenge. I’d be with William during a late-night feeding, get a few minutes in, then have to wake my husband to keep William safe while I quickly ran to the bathroom. Obviously, this made William more than a little upset to start eating only to be pulled away. I also became increasingly worried that he wasn’t getting the nutrition he needed from me because I wasn’t absorbing nutrients the way I needed to. I upped my supplements and kept close tabs on his weight but continued breastfeeding. At this point, I knew I needed to do something different with my medications. What I was doing clearly wasn’t working.

I started to research biologics and met with my doctor to discuss my options. He recommended Entyvio, and my insurance approved it. I worried William would be harmed by breastfeeding while I was on a biologic. Would he be more susceptible to illness because of it? Would my supply be affected? My doctors reassured me that it was safe to be on Entyvio and continue breastfeeding, but I knew the research is limited. After seeking information and support from other moms who have breastfed on biologics, I decided to take the risk, start the biologic, and continue breastfeeding.

“Healthy mom, healthy baby” is the way I decided to frame it.

From flaring to remission

After 3 infusions, I started to feel significantly better, and I am now in clinical remission for the first time since being diagnosed. I finished my breastfeeding journey about a month ago. My supply wasn’t affected by starting the biologic, and my son has had absolutely no ill effects. He gets sick less than I do! Most importantly, I can engage with and care for him so much better than I could while I was ill. Family photo

This journey has made me think twice about having more children. Pregnancy and childbirth were really, hard on my body because of my UC and other complications I experienced after delivery and I’m not sure I want to risk my health again. Sometimes I wish that I were like “normal” people who approach pregnancy without having to think about all of this. I remind myself that this is MY normal, and that’s okay. And it’s okay to have one child if we decide to do that. I keep repeating this: healthy mom, healthy child(ren).

Reflecting on my journey, here are some lessons learned that I hope you take away:

  • Work closely with your GI doc and your Maternal Fetal Medicine team to make a plan BEFORE trying to have a baby (or even “letting the universe decide!)
  • Prioritize your own health, even when pregnant. Remember: healthy mom, healthy baby. This includes taking care of your mental health.
  • Connect to other moms who have CD or UC to learn from them
  • Flaring during pregnancy and postpartum is physically and mentally exhausting – lean on your support system heavily if you find yourself in that place
  • If breastfeeding is important to you, talk to your doctor about whether it’s safe to continue to do so while on a biologic – utilize the IBD Parenthood Project as a helpful resource.

 

IBD on the College Campus: The Social Burden

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

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

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

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

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

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

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

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

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

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

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

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

Tips for students to calm the social stress

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

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

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

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

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

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

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

 

 

IBD on the College Campus: Getting the Medical Logistics in Check

Moving away from home and embarking on a college career is bittersweet. You’re excited. You’re anxious. You’re curious. So many emotions. The world is your oyster and you quickly discover what a small fish you are in this big world. For those entering college with an IBD diagnosis, life comes with many more challenges and fears. Medical concerns are a biggie. You are often forced to find an entirely new GI and care team that is local, in case you flare. You may have always counted on your parents to do your injections, now you may have to do them on your own. If you get infusions, you’ll need to find a new place to receive your medication, that may be out of your comfort zone and be complicated due to your course schedule.

That lack of comfort and consistency in care with a GI you know and have built trust with can be a scary chapter in your patient journey. IMG-0902Jennifer Badura’s son was diagnosed with Crohn’s while in high school. As a parent, she found her son’s transition to college challenging.

“It’s difficult to find a new place for getting lab work completed and a new place for infusions. Getting insurance, prior approvals, etc. along with the unknowns and anxiety about going to a new place for treatments and trying to get everything scheduled is tough.”

Dr Fu

Nancy Fu, BSc.(Pharm). MD. MHSc. FRCP(c), University of British Columbia

is a GI based in Vancouver, with research interests in IBD, infection and adolescent transition. She recommends making sure your primary GI connects you with a GI close to where you are attending school in case a flare requires urgent assessment.

“As a GI who sees adolescents, I make sure I am at least electronically available for my patients via texts or emails. Studies have shown young adults prefer to communicate via email as opposed to over the phone.”

Other recommendations that may be of help to you:

Get acclimated. Set up an appointment with a GI local to campus over the summer months or at the beginning of the school year, so you can build a solid relationship with a new physician. Keep your “hometown” GI’s number in your phone in case you’re flaring, hospitalized, or if your current GI has a question. hospital-840135_1920Use the patient portal to your advantage. Never hesitate to reach out if you have a question or medical issue going on. Listen to your body’s signals and don’t wait until it’s too late.

Make sure you remain compliant and manage your disease. Have enough medication on hand and have a game plan in place for how you’ll receive refills—whether it’s your parents bringing your prescriptions to you, mailing them to you, or you physically picking your medication up from a nearby pharmacy. laboratory-313864_1920Set reminders in your phone or utilize apps that track your symptoms and whether you’ve taken your medication.

Keep your prescriptions in a safe, undisclosed place. Let’s keep it real. Chances are there will be someone on your floor or even a roommate who may want to get their hands on your prescriptions, specifically your pain medications. Don’t flaunt them. Keep them hidden. Count your pills each day if you need to.

Discover local support and build a new support community. Being away from home and away from your personal support network is daunting. Check out the local Crohn’s and Colitis Foundation chapter near your campus and connect with local people who understand your reality. See if new friends from campus want to join you for a local IBD charity event. Not only will this be uplifting for you, but it will open their eyes and give them a bit of perspective about what life with IBD entails.

Click here to check out IBD on the College Campus: The Challenge of Academics.

IBD on the College Campus: Upcoming Webinar about Disease Management and Accommodations

Studying for finals. Living away from home. Having to use public bathrooms at the dorms. Eating cafeteria food that triggers symptoms. Dealing with professors who aren’t empathetic. Trying to keep up with your social life and your peers. Being away from the care team you know and trust for your medical needs. EA778869379446A38695A402A3CA2CDCConstantly stressing about academics, friendships, relationships, and managing a chronic illness for which there is no cure. This is life with IBD on the college campus.

“Lucky” for me, I didn’t start experiencing Crohn’s symptoms until second semester of my senior year of college at Marquette University. At the time, I just thought the late-night Taco Bell runs were catching up with me. I ended up being diagnosed with Crohn’s two months after receiving my journalism degree.

It’s a chapter of life that is a coming of age and a fresh start for many, but IBD can complicate the experience greatly. The disease has a way of shattering dreams, delaying goals, changing timelines, and ruling our lives. But our community is resilient and strong. Despite the pain and the worries, many of us choose to push through, find a way to make a detour, and do what’s best to bring us happiness.

The Crohn’s and Colitis Foundation’s Mid-America Chapter is gearing up to a host a webinar Thursday, September 26 from 7-8 pm CT to address managing the disease while furthering your education along with finding the appropriate accommodations so you have the help you need to make it through. 6921B871464A4F6E8FE7D218A1A3F575Dr. Yezaz Ghouri, MD from the University of Missouri School of Medicine, along with IBD Patient, Ryleigh Murray, will be hosting the discussion. Ryleigh is currently a graduate student studying public affairs at the University of Missouri. Click here to register for the webinar.

“When entering college, you never expect your IBD to impact your education, until it does. Establishing care with a GI doctor in your college town, managing your medications, diet and stress can make a big difference in how you feel and how much you learn. IMG_0717Registering with the Disability Center on your campus and receiving accommodations allows yourself to increase your success rate within higher education. Early registration, extended test time and closer parking to your classes are just a couple simple requests that can impact your education for the better,” said Ryleigh.

College years are some of the most exciting times for young people who are given the opportunity for the first time in their life to be independent and self-sufficient. But the transition doesn’t come without its challenges.

Dr. Ghouri says, “Patients who are of college age are forced to decide what type of diet works for them and what hurts them, learn to administer medications themselves including shots and sometimes finding a location where they can receive IV infusions. It is crucial to be compliant with the treatment plan and important to seek out help from a nearby GI specialist to monitor their disease, thereby preventing flares and complications from IBD.”

During the webinar you can expect to learn about coping with IBD on college campuses and about the assistance that is available to those living with Crohn’s and ulcerative colitis. university-105709_1920

In the weeks ahead, I will dig deeper into this issue on my blog (Lights, Camera, Crohn’s). Since tapping into the IBD family and patient community on social media, I’ve come to realize how much interest, how many questions, and how important the need for support and conversation is pertaining to what life is like for college students (and even professors!) living with IBD. Stay tuned!

When pain medication adds to your IBD troubles

It was one of those moments when you’ve exhausted all options for comfort and feel the need to turn to pain medication. As an IBD mom, taking pain medication is now my last resort, because it makes me feel less present and capable of taking care of my children. Luckily, this time around my Crohn’s symptoms decided to peak on Labor Day weekend while my husband was home.

I casually took a Tylenol with Codeine, expecting for the pill to take the edge off the gnawing pain in my abdomen that had been bothering me all day. Thirty minutes went by, then an hour, then a few hours, no relief. My mind started racing as to why I was feeling this way. Was it the fact I went out the night before and had a drink with friends? Was it because I had Starbucks hours before? Was it the rice cakes I ate that sometimes cause my stomach to hurt?

84910E13-824E-4856-BF44-D3BBBD5BCC1FAs the pain persisted and my little guy snuggled me on the couch, I was losing patience with the pain that was drowning out everything around me. I wanted relief and I wanted it quickly.

So, I went in my medicine cabinet and saw I had Oxycodone left over from my c-section six months ago. I grabbed a glass of water before bed and popped the pill without thinking twice. I assumed that little white pill would help me sleep and help the pain subside.

What happened was the opposite. What happened is something that still sticks with me now. I crawled into bed next to my husband and could tell something was off. I traded in my abdominal pain for much worse. It was a nightmare of a night filled with anxiety, nausea, and dizziness. I laid awake in bed for nearly six hours. I had to keep my hand on top of my chest because I was so anxious about not being able to breathe. I felt like I was suffocating. My mouth felt so dry, yet when I would try and drink water I would almost throw up. My thoughts raced. I felt so scared. So alone. Despite Bobby being right next to me. He held my hand, he tickled my back, he did everything he could to help calm me down.

IMG_9691Sure, I couldn’t feel the abdominal pain, I couldn’t really feel much below my neck, which added to my anxiety. My body felt like Jell-O. I felt like I was living an out of body experience. I was whimpering and whining at 3 in the morning that I just wanted it to be the next day.

These are the behind-the-scenes IBD moments that people often don’t hear about. These are the difficult experiences as patients and as parents that we often keep behind closed doors. Both my kids were under the weather, I felt so guilty that if they woke up, I wouldn’t be capable to take care of them, let alone hold them. Poor Bobby had to be all three of our caretakers that night.

The morning came and I woke up at almost 9 a.m. I had been dead to the world for about five hours. Never heard my baby on the monitor. Never heard my toddler across the hall. Never heard my husband get up to take care of them. When I walked into the family room, I felt the aftereffects of my stomach pain from the day before. I felt like I was still in a cloud. My head pounded. The headache persisted until dinner time.

pharmacy-3087596_1920This is not to say pain medication is always a no-go. I’m of the mindset that those of us in the IBD community should have access to opioids. At the same time, this is more of warning for patients to be mindful that the medication you take to calm your pain, may bring about side effects that are even worse than what you are dealing with in the first place. Personally, I’ll never take oxycodone again. You live and you learn. Sometimes with IBD unfortunately it has to be the hard way.

When Crohn’s Tries to Stop you from Being Super Dad: How One IBD Dad Finds Balance

The IBD community is flooded with countless female advocates. I’ve recently been vocal about the need for more men to stand up, share their stories, and be a voice for the community. If you attend a conference or an IBD patient advocate event, 90 percent of the room is female, the same can be said for social media.

This is surprising since according to the Crohn’s and Colitis Foundation, IBD affects men and women equally. That being said, in my experience speaking with men young and old with Crohn’s and ulcerative colitis—many tend to suffer in silence, downplay their pain, or prefer to keep to themselves about their struggles. While the disease may physically manifest itself and impact men in different ways, it’s the way many feel embarrassed to share their experience, that I wish could change. Colby and Hallie 1

This week—a guest post from Colby Reade. Colby is a husband and a dad who also has Crohn’s disease. He shares insight about his struggles to find a balance between IBD and family life, while offering helpful advice for how to be a “Super Dad” despite your illness. I’ll let him take it away…

I grew up believing my dad was a superhero. There was nothing he didn’t know or couldn’t fix. He would spend hours with my brother and me teaching us how to hit a curve ball or box out a defender on the basketball court. He worked insanely hard to help provide us with a comfortable life. He showed us what it meant to be a partner in a marriage. In my eyes, he was “Super Dad.”

For as long as I can recall, I wanted to live up to that image and a little over four years ago, I got my opportunity when my wife gave birth to our daughter. Nothing is more important to me than being a solid dad and husband. Fatherhood is undoubtedly the most rewarding experience of my life, but also the hardest thing I’ve ever chosen to tackle largely because it is so important to me to be good at it. Ethels Birthday

Unfortunately, life through us a curveball in 2017. What I thought was a case of nervous stomach from a stressful stretch at work turned out to be a Crohn’s flare that lasted 10 months. Not only was I terrified about all the symptoms (digestion issues, pain, fatigue, weight loss), but I felt myself struggling to take on the most important “job” I had.

I was too tired to play or engage when I came home from work…flopping on the ottoman in our living room, trying to pry my eyes open.

I was in pain all the time and struggled to find joy in daddy-daughter games.

I was terrified to be more than five feet from a bathroom so outings to the mall, the zoo or the beach were on hold.

OrchidIt took time and some trial and error, but as I navigate my somewhat new diagnosis, my wife and I have learned how to best monitor my symptoms to try and avoid future flares and take Crohn’s on as a family. In addition to my medical care, this includes some key strategies to how we approach parenting.

Here’s 5 ways we tackle parenting with Crohn’s:

  • Explain to your kiddo what’s going on. This has to be done age-appropriately of course, but it’s important that you don’t hide from your children that you are sick. It is not a failure to admit that you have an illness. Communicate to them that you are under the weather and need their help to adjust your usual routine until you feel better. My kiddo LOVES playing nurse and taking care of her mom or me when we are sick so we can make it into a game.
  • Create activities that don’t involve a lot of energy. While the digestive problems were hard, the fatigue was the worst for me. We started a list of low-energy activities I can do if I find myself mid-flare, such as board games, playing with my daughter’s doll house, and working on crafts.
  • Communicate with your significant other and boss. ThanksgivingMy wife is amazing and understands the physical impacts of a flare, but it’s my job to share with her if I’m feeling Crohn’s-y. Similarly, I have started a dialogue with my boss, so if I flare, I don’t have to pour every ounce of limited energy I have into work and come home completely empty.
  • Find an online community. It can be tempting when you are sick to start Googling your symptoms. This can be a big mistake with IBD because everyone’s case is different and the treatment plan for one person will be greatly different from another’s. However, engaging with an online community either on Twitter, through a Facebook group or an online forum, can be a great resource to gather measured feedback and share your experience.
  • Be kind to yourself. As modern, involved dads we put ourselves under tremendous pressure to be both provider and nurturer. When our bodies are compromised, it can feel like we are failing, weak, and less than. Whether you talk with a counselor, join a support group, or meditate… or all of the above, it’s important to find ways to remind yourself that just because your body is taking on IBD, you are still Super Dad.

You can connect with Colby on Twitter and Instagram (@colbyreade).