Loved one or friend have IBD? Read this before the holidays

November 25, 2019November 25, 20191 Comment

The holiday season is upon us and with that comes family gatherings, social outings, and more food than anyone can handle. As someone who was diagnosed with Crohn’s disease more than 14 years ago, the holidays can still be complicated and stressful at times.

Christmas 2013 with my family

If you’re reading this—and you have a family member or a friend with IBD, you’re in the right place. Chances are you may struggle with how to be supportive, knowing what to say, and how to navigate IBD. I’m here to help so that this truly can be the best time of the year, for everyone involved.

Here are my top 10 tips for making that possible:

Start the conversation. Stop making IBD the elephant in the room. It can be more hurtful if you only see family or friends a couple times a year and if no one asks how you are feeling. Three words—is all it takes— “How’s your Crohn’s?” Ask questions and genuinely listen to our answers. Your empathy means more than you know. This puts the onus on the person with IBD, and allows us to disclose what we’re comfortable sharing, while knowing that you care. When people don’t ask, it seems as if they don’t care. I find this to be especially true as a patient advocate and blogger. So much of my presence and identity is talking about my life with Crohn’s, that when people don’t ask, it hurts more now than it used to. With the growing online social media discussion, I’m sure many people in our community can relate to this.

Leave the neighborhood watch party for criminals in the streets. Chances are Aunt Joan came across a diet “cure” for Crohn’s while perusing through Facebook last month. Insert eye roll. Don’t question the food we put on our plates or ask if that’s going to “hurt our stomachs”. We know our bodies, we know our triggers, and we are the ones who are ultimately going to have to pay if symptoms arise. Comments like “Oh, I didn’t think you could eat that?” or “Isn’t that going to land you in the bathroom?” are completely unnecessary. Focus on passing that side dish of mashed potatoes rather than giving us the side eye at the dinner table.

Be flexible. The unpredictability of IBD—whether it’s feeling too fatigued to shower, lying in pain on the couch or holed up in a bathroom when you’re supposed to be getting ready or making a side dish, can cause us to be late for social gatherings. If a family member is tardy to the party or needs to leave earlier than expected, please don’t give them grief. Chances are they had to muster up a great deal of strength to get out of bed, get dressed, and put on their happy face, even if they are struggling on the inside. Practice grace and patience and remember how easy it is for us to mask pain with a smile.

Don’t be offended if we bring our own food or don’t eat much. Oftentimes if we’re symptomatic or in the middle of a flare we are nauseous and eating feels too risky. It’s nothing against the way you make the family favorites. Trust we would eat everything if we could. Bringing “safe” foods or eating ahead of time at home provides comfort and allows us to enjoy more of the party. Please don’t take offense if we eat very little, or nothing at all.

Please don’t make us feel like a spectacle. Chances are while at a social gathering, we’re going to need to break away to use the bathroom. If we need to go upstairs to use your bathroom, please don’t be offended or draw attention to us when we leave the table or return. We’re not trying to be rude; we’re already embarrassed and don’t want to deal with the anxiety of hogging the bathroom or smelling up the house as people socialize.

We have doctors. Thanks to social media and Google, many seem to think they have the background of a MD. Please don’t try and teach us about a way we can “heal with food” that worked for your neighbor. Please don’t downplay or compare IBD to a stomach bug your toddler had. Please trust we know the side effects of the medications we are on; we know the risks of the surgery we may have to get; we know it all. Please don’t tell us to start taking a supplement you found online. Yes, we’ve heard of: CBD oil, turmeric, probiotics, the list goes on. Please don’t question the safety of our biologic. Our disease is our reality. Unless you live it, it’s not yours.

While IBD is invisible, oftentimes it’s not. If a loved one is on steroids, trust me they are incredibly self-conscious about their appearance. The temporary chipmunk cheeks (are not cute), the acne that makes you feel like a teenager (is nothing to kid about), the sudden influx in weight (is nothing to comment on). The same goes for someone who looks like they’ve dropped a lot of weight. When you have IBD, weight fluctuations happen all the time. It’s not a good thing. It’s because we’re malabsorbing nutrients or in the thick of a flare. If you notice these outward differences in us, please keep the thoughts to yourself unless you know we are purposefully trying to lose or gain weight. Don’t pressure us to be in photos if we seem hesitant. Know that we are aware of the changes and struggle with them daily.

Don’t push the booze. Just as with food, everyone with IBD responds differently to alcohol. We understand a glass of wine here or a beer there at a celebration may not seem like a big deal, but one drink can be enough to cause us extreme abdominal pain. Feel free to ask us, but if we decline the offer please don’t pester us, ask us if we’re pregnant, or try and make us succumb to peer pressure. We’d much rather be sober and present at the party without pain.

Use us as a resource. Have a family member, friend, or co-worker of yours recently diagnosed with IBD? Let us know! Use us as a sounding board. I always love having the opportunity to use my patient journey and experience to bring hope and inspiration to others. Connect us with people in your life who we can support and help. The IBD family is incredibly welcoming and uplifting. By sharing this mutual connection, you can possibly change someone’s patient journey for the better.

You play an integral role in our overall well-being. You bring us normalcy. You have the ability to distract us from our isolating illness.
With my (now) husband, New Years Day 2014. I was very sick at this family party. You would never know it by looking at this photo.

If someone close to you has IBD and they aren’t opening up or wanting to talk about it, don’t push them. We all handle the disease differently, and chances are in time, when the moments right, they will take down their walls. In the meantime, make it known you are present and there to offer support and encouragement every step of the way—and leave it at that. The simple act of knowing who we can count on and trust makes all the difference. Thank you for walking alongside us on this unpredictable and challenging journey and for seeing us as so much more than our disease. For that we are eternally thankful.

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

November 20, 2019November 20, 2019Leave a comment

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.

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. She 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.”

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.

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.

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.

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

November 18, 2019November 17, 2019Leave a comment

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.

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.

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.

If 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

November 11, 2019November 8, 2019Leave a comment

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. For 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. I 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

November 4, 2019November 4, 2019Leave a comment

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. When 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”.

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.”

At 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.

lights camera crohn's

an unobstructed view

Month: November 2019