Diet and Nutrition: The role they play in IBD

Nutrition and IBD. Just saying those two words together makes me feel like I’m running through a rabbit hole, unsure where to turn….and I’ve lived with Crohn’s disease for more than 14 years. Everywhere you look, you see people claiming to “heal their gut” through diet alone, while sharing diet hacks that “cure” IBD, when in fact there is no cure.

Unfortunately, my first experience with a dietitian, days after my diagnosis, was not a positive one. She came into my hospital room and was very doomsday and black and white about what my future held. The conversation led me to believe I would never eat raw fruit or veggies, salads were out, and fried foods were always a no-no. I was told I could have white bread, white pasta, cooked veggies, and plain chicken from that day forward. Hearing this made grappling with the diagnosis much more difficult.

My experience is hopefully not a typical one for those in the IBD community. Dietitians can be and are key players in our overall care teams. They help guide our nutrition and lead us on a path to better health. Chances are if you or someone you love has IBD you’ve come across the laundry list of IBD-friendly diets (SCD, anti-inflammatory, paleo, etc.). If you’ve found a diet that works for you, that’s great—but it can be extremely dangerous and damaging to use your own personal experience to sway others, especially if you preach to go off all medication and focus on diet alone.

Just as IBD manifests uniquely in every person, trigger foods vary, too. UPMC_HEADSHOT_HIGHRES_ALCHOUFETE_THEREZIA_DIETITIAN_20191113This week—I interview Therezia AlChoufete, a Registered Dietitian Nutritionist (RDN) who specializes in Gastrointestinal Diseases, to set the record straight about this area of disease management. Therezia completed her Bachelor of Science in Neuroscience and her Master of Science in Nutrition and Dietetics from the University of Pittsburgh.

NH: What role does diet/nutrition play in treating IBD?

TA: “A huge role – symptom management is very helpful to improve quality of life for patients with IBD, and many patients have difficulty understanding what they should or should not eat. A Registered Dietitian Nutritionist can help to identify trigger foods and other factors that may be affecting digestion & GI symptoms, nutrition for ostomy management, modifications to diet before and after surgery, recipe modifications to improve GI tolerance, and much more depending on each patient’s medical history.”

NH: When you’re given a patient with IBD, what type of information do you share in those appointments?

TA: “I see my patients in an outpatient setting – this allows me to review the patient’s goals, assess their nutrition status, and determine an individualized plan with every patient. Information can vary depending on each patient’s unique history, goals, and food tolerance.”

NH: Each person’s body responds differently to specific foods, everyone has different triggers, how do you create a plan that is tailored to everyone, rather than saying “all people with IBD need to stay away from XX”?

TA: “There is definitely no one-diet-fits-all approach for IBD. I typically review the patient’s food history, their unique food tolerances, and provide a plan according to each person’s goals and disease status. I try my best to avoid food restriction and liberalize the diet as tolerated by each patient.” brooke-lark-08bOYnH_r_E-unsplash

NH: What are the most common questions and concerns you hear from patients?

TA: “A very common question is what food/supplements can I eat to fix my symptoms – unfortunately, there is not a simple answer. But this leaves us some room to discuss food triggers in more detail and review ways to achieve a well-balanced diet.”

NH: Why is working with a nutritionist so critical for those with IBD?

TA: “Registered Dietitian Nutritionists are food and nutrition experts. We use science-based evidence to provide recommendations that are specific to each person’s medical history. This may include review of micronutrient deficiencies, hydration status, fluid build-up (sometimes following use of steroids), medication side effects, risks of malnutrition (which can occur in all body sizes), supplement questions, and so much more. An RDN can provide individualized medical nutrition therapy to minimize GI symptoms and optimize gut health in conjunction with medical plans provided by gastroenterologists.”

NH: What type of difference do you hope to make in a person’s patient journey? 

TA: “My hope is to help patients liberalize their diet and improve their quality of life. It is very important to me to help patients realize that they have a team of professionals that can help them manage their IBD. I enjoy working with a team of clinicians to target medical, behavioral, and nutritional health concerns to optimize care for each individual.”brandless-18lr202tDKY-unsplash

NH: What advice do you have for patients who are in the middle of a flare up?

TA: “Communication with your Gastroenterologist is very important if you feel like you are having flare-like symptoms in order to receive proper treatment. Sometimes, foods that are typically tolerated during times of remission are not tolerated during a flare, and an RDN can help you determine a softer diet that is easier to digest based on your individual needs.”

NH: The term “healing the gut with food” is commonly heard within the IBD community. What’s your belief on that vs. using diet as a combination therapy with medication?

TA: “Unfortunately, diet cannot cure IBD. It can improve some symptoms, but it is so important to work with your doctor to receive proper medical treatment for the disease, follow up with a dietitian to optimize your diet, and address any behavioral health management with your therapist or psychiatrist.”

Connect with Therezia here:

Twitter: @AppetiteOfMind

Instagram: @appetite_of_mind

Additional Resources:

Crohn’s and Colitis Foundation: https://www.crohnscolitisfoundation.org/diet-and-nutrition

International Foundation for Gastrointestinal Disorders: https://www.iffgd.org/other-disorders/inflammatory-bowel-disease.html

United Ostomy Associations of America: https://www.iffgd.org/other-disorders/inflammatory-bowel-disease.html

 

 

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

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.

famparty2

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:

  1. 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.
  1. 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”. element5-digital-XQ5QWR8eZ5I-unsplashWe 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.
  1. 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.
  1. 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. kelsey-chance-ZrhtQyGFG6s-unsplashBringing “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.
  1. 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.
  1. 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. mona-masoumi-6dgpbvuAEpA-unsplashPlease 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.
  1. 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.
  1. Don’t push the booze. brooke-lark-HjWzkqW1dgI-unsplashJust 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.
  1. 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.
  1. 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.
    famparty3

    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.

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

 

 

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).

 

IBD Travel Tips You Won’t Want to Leave Home Without

It’s a scary feeling when you’re traveling or away from home and your IBD symptoms flare. As we all know, chronic illness never takes a vacation. Oftentimes the change of scenery and schedule is the perfect storm for disease activity to peak. 

mT3tVteyRCOz2s4mbzraGAThis week–Megan Murray from Balanced Life and Travel shares her top tips for staying in your comfort zone so you can make the most out of your time away. Megan is 37-years-old and was diagnosed with Crohn’s disease in 2013. She’s originally from Oklahoma City, but now she lives in Spain with her husband. She’s passionate about travel and not allowing her disease to hold her back from exploring the world.

Drink water all day, every day

I used to experience painful gas and constipation when I traveled. I don’t like taking laxatives or stool softeners if I can avoid it, so I’ve learned that drinking plenty of water is the best way to avoid/fix constipation on the road. I always carry my stainless-steel water bottle. Single-use plastic bottles of water are convenient, but their cost adds up financially and environmentally. 

Know how to find a restroom quickly

This can be pretty easy when you are traveling in America, because you can usually duck into any store, restaurant, supermarket, museum, hotel, etc. and use the bathroom that is available. Always make sure you have your I Can’t Wait card from the Crohn’s and Colitis Foundation. I’ve only had to use mine once, but boy did it save me from an awful situation.

Outside of North America, it can get trickier depending on where you are and how high the language barrier is. If you don’t speak the language and English isn’t widely spoken in your destination, make “May I use your restroom?” the first thing you learn. Research if there is a Crohn’s and Colitis Foundation in that country and see if they have an I Can’t Wait card in the language of the country. fullsizeoutput_1690

Traveling through Asia and Europe, I’ve never had trouble stopping in at hotels. If it’s a big hotel, especially if it’s an international brand, I just confidently waltz in like I’m staying there and use the lobby bathrooms. If it’s a smaller place, front desk staff will most likely speak English, so you can politely ask to use the bathroom. I’ve never been denied.

Museum lobbies are also a good choice. The one drawback being the security line you have to go through to get to some lobbies. Also look for banks and other businesses that have lobbies. Check out my post on spending a weekend in London with a chronic illness to read about how some very friendly bank employees saved the day for me.

Research food options before you go

My favorite tool on Google Maps is marking restaurants “Want to go” before I visit a city. This helps me avoid finding myself in the middle of fast food restaurants with nowhere to get a meal that won’t trigger my symptoms. IMG_1226

I eat a vegan diet, so I find all of the places that are vegan, vegetarian, and have vegan options before I go and tag them all. In places where I don’t find as many options (usually more rural locations), I pack food that works for me. I love Oh She Glow’s Glo Bars, so I always make a batch or two, wrap them up and throw one in my bag each day. Then I know I always have a snack that will keep the hangry away and won’t make my Crohn’s hurt! Glo bars won’t work for everyone (hello, low-fiber diet I was on for two years), so brainstorm a hearty snack that is portable to take with you. 

Pace yourself

When planning your itinerary, it’s tempting to cram every last activity into your days. Resist this urge! SPq9iyQkSv2CpXItQzKRWgMake a list of everything you’re interested in and then prioritize, cutting out what you don’t have your heart set on. Trying to do it all sets you up for exhaustion, frustration, and disappointment. 

  • Consider how much energy each activity/sight will take and then begin to plan your days
    • Museums are sneakily draining because you are on your feet the whole time.
    • Balance a demanding activity with a laid-back activity on a given day
  • Think about transportation
    • There’s nothing like a 20-minute uphill walk to zap your energy. Budget for taxis. You save time and conserve energy, so they’re worth the cost.
  • Hop-on, Hop-off buses
    • They are super touristy, but they allow you to see and get around a city without the stress of navigating and/or walking to them all.
  • Take breaks
    • I always need a midday break. I either go back to my hotel to decompress and rest or, at the very least, find a cute cafe and have a cup of tea as I read. I love the Kindle app on my phone. Afterward, I’m refreshed and ready to see or do more. fullsizeoutput_f9

I firmly believe that while a diagnosis of Crohn’s or ulcerative colitis is life changing, it’s not a life sentence. I have always loved traveling, so I haven’t stopped. My travels just looks a little differently than they did before. 

“My mom has Crohn’s and I do, too”: Why Sam doesn’t allow IBD to take over her life

Motherhood provides perspective. Motherhood shapes us in a way we didn’t know possible. When you’re a mom with IBD, your past and current struggles make you look onward to the future in a different way. Meet Sam Zachrich. _ADP6012She’s a 30-year-old mom and wife from Utah, who works full-time outside the home. She’s battled Crohn’s disease since December 2011.  

Even though she was officially diagnosed a week before her wedding (imagine that!), Crohn’s is something that was a part of her life long before that. Her mom, also has the disease. This week–Sam shares her experience taking on motherhood and marriage, while juggling everything that comes along with a life of chronic illness.

Like someone with a bad knee before a rainstorm. I knew I was not feeling well and the results of my colonoscopy would reflect that. More medication and more doctors is all I heard from my GI. My husband Nate will tell you a different story. He is always my biggest supporter and remembers way more than I do after waking up from a scope. He heard “Sam things look better… your colon is healing… but there are some issues.” All I heard was “issues”. As a Crohnie, it’s easy to focus on the negative of our disease. It’s easy to forget to celebrate how far we’ve come and the milestones we’ve accomplished throughout our journey.

Growing up with a parent who has IBD

I knew my mom had Crohn’s from an early age, but I didn’t fully understand how much pain and hardship it caused her, until I was in college. I had a wonderful childhood, filled with amazing memories. I don’t remember my mom being sick very often. There were hospital visits here and there, I just always had faith that she would get better.

48397243_10213280363469781_8737081387036704768_oMy mom did an amazing job making sure our lives did not revolve around her disease. She did her best to stay healthy and support us. I want my daughter to have the same experience as I had growing up. I don’t want her to ever feel the burden of my disease. I want her to know that no matter how difficult life gets, there is always hope. My mom is the one person I can call who fully understands my struggles. To have another family member that has and is dealing with the same chronic health issues is a huge support. I am very grateful for her.

A mother’s love

My mom was with me for every scope and doctors appointment leading up to my diagnosis of Crohn’s. She was a shoulder to cry on and a listening ear because she completely understood. Feeling guilty is not something we do easily in our family. We try to stay the course and figure out next steps. I think to some degree she had guilt, but she wanted me to stay strong and knew I would be alright. She has always told me to focus on what I can change in the moment.

To this day, she reminds me: Crohn’s will always be apart of your life, it’s what you do with it that matters. 405889_2533476622399_548286302_n

I try not to focus on passing this disease to a third generation. I know that one day I might be in the doctor’s office with my daughter listening to the same talk I received December 2011. Hopefully we will never have to go there, but if we do, I know that the support and perspective that I’ll be able to provide my daughter can make or break a diagnosis.

In sickness and in health, literally

My husband, Nate, was there from the start of my Crohn’s journey. samI remember explaining to him at one point that this disease would be something I will deal with my whole life and it was okay for him to leave me. It’s really hard to put my relationship with my husband into words. When it comes to Crohn’s, the thought of all he does to support me, makes me tear up. He knew that after our wedding day he would take my mom’s place at all my appointments and be my sole caregiver. Nate never shied away from the challenge and it makes me love him more and more everyday. He is my number one and having support from him means the world to me.

Despite receiving the IBD diagnosis a week before getting married, our wedding day was amazing! I look back and don’t remember being sick (thanks to the steroids!). Throughout our lives there will be days we get to be “normal” and we try to embrace those times as a couple and as a family. Don’t allow for this disease to control all aspects of your life. Have that amazing wedding and find a spouse who loves you regardless of your illness. You deserve that and so much more!

Finding peace through support and letting go

Fast forward to this month. Following my scope, I had surgery to remove an abscess. My husband and I had planned a date night for that evening and already had a sitter. We traded our dinner and play tickets in for a night out at the hospital. This was my second surgery to remove an abscess. It doesn’t get any easier, but I have a different mindset now that I am a mom.  _ADP6466

It’s always hard to leave our daughter Kamryn. We are very blessed to have an amazing support system that we can rely on. It’s so helpful to know that when you are going through a medical procedure, the person taking care of your child loves them as much as you do.  We do not have any biological family in Utah. However, we have an amazing church family that really loves and takes care of us just as well.

My advice to fellow IBD parents is to find peace in knowing that your child will understand one day how much sacrifice you have made to fight this disease. There will come a day when they will ask you questions and you can share your experiences with them.  

I am healing well and my doctors are monitoring things to make sure my Crohn’s stays under control. I have had routine blood work since the surgery and it looks like I will be going in for an MRI this week to check on my liver. While these unexpected twists and turns in my patient journey don’t get easier, I’ve learned not to focus on what I can’t control.

The bright spot of my journey

I was blessed to be able to have a baby girl in January. After so many years of hating my body and being sick, my body finally showed me what it’s capable of. I know that my journey with Crohn’s has made me the best mom possible for my sweet Kamryn. Even though my body may be riddled with illness, it was still able to create a perfect miracle. sAM

I have learned to deal with life in a completely unorthodox way, because of my disease. I am a better mom, wife, daughter, sister, coworker, employee, and friend. Don’t get me wrong, there are days I wonder ‘God, why me, why this disease?’ But I know deep down I am stronger for it and He will see me through the tough times and setbacks. As someone who grew up with an IBD mom, it’s my hope Kamryn will someday look at me the same way I look at my mom.

 

Why I refuse to mourn who I was prior to Crohn’s: A birthday reflection

This week, I turn 36-years-old. Birthdays are a time of reflection, celebration, and excitement. Last month marked 14 years since I was diagnosed with Crohn’s disease. A chronic illness that has shaped my adult years and my identity.

I recently saw a post on Instagram about imagining life prior to illness. IMG-8194Prior to the challenges and the hurt that coincide with having a disease that you expect to have until your dying day. It’s heavy and can be overwhelming. There’s no cure for IBD and once you are told you have it, your world and your life is forever altered.

When I see childhood photos of myself and think back on my wonderful memories with family and friends through my college years, that girl often feels foreign to me. There are a few things I wish I could whisper in her ear:

“Stop taking your health for granted.”

“Soak in this feeling of invincibility.”

“Make the most of every single day.” IMG-8201

“Enjoy how carefree it feels to never have to worry about what the next day will bring.”

“Soak in the comfort of never needing medication or going through painful pokes and prods.”

“Have more empathy for those around you who aren’t as lucky.”

the list goes on. Hindsight is 20/20. I can’t fault myself for floating through life the first 21 years. I’m glad I had no idea of what was to come. At the same time, I wouldn’t trade what the last 14 years have given me:

They’ve brought me debilitating pain that built my strength.

They’ve brought me sorrow that’s made the sunshine feel extra bright on my shoulders.

They’ve brought me fear that’s been replaced with resolve. 

They’ve brought me lonely moments that are now filled with the laughter of my little ones.

They’ve brought me years of feeling unlovable, but then finding magic with a man who never once shied away from my illness. image (66)

They’ve brought me extreme vulnerability that’s now coupled with gratitude. 

They’ve brought me scars internally and externally that I now see as battle wounds.

They’ve brought me years of embarrassment, that’s transformed to a scarlet letter that I wear with pride.

They’ve brought me feelings of worry that have been washed away by clarity and perspective.

On this birthday and moving forward, rather than mourn the loss of who I was up until age 21, I choose to celebrate who I’ve become the last 14 years. While this illness has tried time and time again to rob me of my joy, it’s provided me with evidence of my resilience. Since my diagnosis, I’ve worked full-time as a TV news anchor, reporter, and producer, I’ve gotten married, I’ve had two children in 21 months, and I’ve become a steadfast patient advocate. balls-1786430_1280Crohn’s has shown me that just because I get knocked down with a flare, doesn’t mean I can’t bounce back and be better. With Crohn’s, life often feels like you’re in the passenger seat and your fate is out of your hands. Rather than sit back passively, I choose to grab the wheel. Cheers to 36!