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: The Challenge of Academics

You’re sitting in class. The abdominal pain starts drowning out the words your professor is saying. You have the urge to go to the bathroom, but you’re embarrassed because you literally just got back to your seat from excusing yourself minutes before. You’re struggling. E85DEFFBEA08446AAED0650FA09CCB0DYour disease is making the simple task of sitting in class alongside your peers an ordeal. While you may feel alone in this moment, thousands of college students around the world living with IBD can relate to this overwhelming stress and strain.

When I put a call out on Twitter and asked the IBD community what worries and challenges impacted college students, here are some of the responses I received pertaining to academics:

“Trying to balance wanting to do well vs. taking care of myself. I would try to push past a flare to study or go to class and would end up in the hospital (15+ ER visits and 5-6 hospital stays). In the long run, pushing past it was not the best idea. IMG-0787Balance is key. Health comes first,” said Aaron Blocker, a Crohn’s patient and IBD advocate. “It sucks to have to pause college because of your health, but school will always be there, and your health is important for long-term success.”

Kristin Harris has ulcerative colitis, one of her biggest worries was offending teachers by leaving multiple times to go to the bathroom. “Knowing I may dash out of class gave me major anxiety. I always tried to secure a seat next to the door. I was terrified I’d have to run to the bathroom during a test and that made me so anxious—which only made my symptoms worse.”

The same can be said for Rasheed Clarke. He too lives with ulcerative colitis and is a vocal advocate in our community. “Biggest worry was making it through each class without having to scoot to the bathroom. Somehow, I managed to make my bathroom trips in between classes…most of the time. I also kept spare underwear with me in case of accidents, and let’s just say I’m glad I did.”

Breaking down your walls and being open with professors

Similar to personal relationships and friendships, those on campus can only offer support and help to you if they are aware you have IBD. By openly communicating with your school’s disability office and getting the proper accommodations in place, along with informing your professors, you set yourself up for greater success.

“The hardest part for me was sharing a letter written by my GI with my professors explaining my medical situation and requesting classroom accommodations. IMG-0789As a straight A student, now struggling to pass classes due to an awful flare, I was devastated that I needed to ask for help. I was appreciative of my professors’ extreme kindness and that I was granted accommodations (deadline extensions, attending a different lecture on bad days, rescheduling exams, etc). This was a profound moment that taught me it was okay to ask for help,” said ulcerative colitis patient and IBD advocate, Jenna Ziegler.

Alex Beaudoin was diagnosed with Crohn’s during her academic career. She learned the benefits of communicating with professors. “I was shocked at how understanding everyone was. IMG-0788Ask for extra time, ask for a note taker. Get in touch with your school’s office for those with disabilities. Access the support you need to be on equal ground.”

Key accommodations to discuss with your school’s disability office

As people living with IBD, most of us strive to overcome our personal limitations. At the same time, it’s important to understand your achievements and accomplishments are not diminished when you ask for help and assistance. If anything, accommodations will help you reach your goals and get to where you want to be.

According to Section 504 of the Rehabilitation Act of 1973 (as well as the Americans with Disabilities Act), public, government-funded institutions such as state and regional colleges and vocational programs, are required to make reasonable modifications and adaptations for students with disabilities that significantly impact their education, learning, or physical ability to participate in programs. Click here to learn more about disability services and your rights as an IBD patient. This pertains to all school-age children and adults, click here to check out the Crohn’s and Colitis Foundations Guide to Educational Equality.

I asked for disability accommodations which at my school, last one year and then you’re re-evaluated by their social worker for whatever your needs might be. For me, in writing-intensive classes, I was allowed extra time to submit papers. For classes with exams, I received extra time to complete the exam. IMG-7331I also can use the bathroom frequently without question, eat in class without any questions and I’m allowed more than the usual 2 absences allowed in most classes,” said Tina Aswani Omprakash, Crohn’s patient and IBD advocate. “If there are group projects and I can’t partake; I ask the professor if I can do something on my own.”

The Crohn’s and Colitis Foundation’s Mid-America Chapter is gearing up to a host a webinar tomorrow (Thursday, September 26, 2019) from 7-8 pm CT to address managing IBD while furthering your education along with finding the appropriate accommodations. Click here to register and stay tuned for Part Three of my series “IBD on the College Campus” next week.

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 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. 

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!

Breastfeeding with Crohn’s: What I wish I would have known

Breastfeeding. Before I became a mom, I had no idea what a loaded word it was. So many emotions, so much controversy, so much judgement. As an IBD mom of two little ones, my journeys with my kids differed greatly. Ironically, World Breastfeeding Week wrapped up (August 1-7) and so did my breastfeeding journey with my daughter. IMG-5717 Whether you’re a chronic illness mom or not, one of the first questions you often get asked is “are you breastfeeding?” It’s such a personal choice and decision, that really isn’t anybody’s business. Yet, men and women alike act as though it’s just casual conversation.

For many of us in the IBD community, breastfeeding is complicated. We have a lot more to consider than our milk supply coming in and a proper latch. We have to weigh the pros and cons of how our biologic drug passes through the milk, whether or not to pop a pain pill or struggle through the day so we’re able to feed our babies, along with the stress and exhaustion that comes along with the postpartum period, while navigating motherhood with chronic illness. We have to worry about what’s going to happen if we’re hospitalized and unable to feed our baby, our minds race with the what-ifs, even when we’re in “remission”.

My son, Reid, will be 2.5 in September. IMG-5411Before I ever became pregnant with him and up until the moment he was born, I was adamant on feeding him formula. I personally felt there were too many gray areas with the medication I am on and didn’t want to find out down the road that I put him at risk for dangerous long-term side effects. I ended up nursing the first three days in the hospital so that he could get the colostrum. Even though I was confident in my decision at that time, I sobbed when he got his first formula bottle in the hospital, because once again my Crohn’s prevented me from feeling like a “normal” person. Each time someone questioned my decision to formula feed or assumed I was breastfeeding, it pulled at my heartstrings and made me feel a bit embarrassed and less than.

My daughter, Sophia, will be seven months this week. During her pregnancy, it was like a light switch went off. I did my research and I was determined to give breastfeeding a go. IMG-7340I learned about how breast milk would benefit her microbiome, lower her chance of one day developing IBD, improve her immune system, and that Humira was considered safe for nursing, among other remarkable benefits. Many friends and family members offered invaluable advice and support to prepare me for what was to come once she entered the world. No matter how much I thought I was ready, it was still overwhelming and emotional.

Looking back—here’s what I wish I knew as a breastfeeding mama who has Crohn’s.

Just because it’s natural, doesn’t mean it’s easy

To go from making a formula bottle with my son to pumping and syringe feeding a newborn was a bit of a shock to our family. As you can imagine—it was all new and foreign to us. The first night home was an absolute nightmare. Sophia was cluster feeding the entire night. Didn’t sleep a wink. Her latch was off. I was bleeding. She’d only nurse on the right side. Tears were falling and I didn’t know how I was ever going to breastfeed. I felt like I was letting myself and my daughter down. The IBD piece of it all made me feel the pressure to push through. IMG-0998I wanted to do all I could to protect her and felt guilt for not doing the same for my son. I remember lying in bed with her on my chest that first night, my husband sleeping, and texting a bunch of fellow breastfeeding moms for advice in the middle of the night. They all responded in minutes and comforted me. Initially, I had been told not to use my breast pump the first few weeks. I ended up using my pump the first week and it was the best decision I made. If I hadn’t done that, chances are I would have never made it through that initial week without changing my mind and formula feeding. If nursing is painful or difficult, don’t hesitate to break out the pump and relieve your engorged chest. Whether a baby is nursing or receiving breast milk in a bottle, it’s all the same at the end of the day.

Introduce the bottle early on

When you live with IBD, you rely heavily on others being able to help you when you’re stuck in the bathroom or fatigued beyond belief. Some days other people are going to need to feed your baby, whether it’s a spouse or your mom. If you wait too long to introduce a bottle, you increase the likelihood of your baby refusing a bottle, which puts added pressure on you. IMG-3793 We gave Sophia a bottle the first week home, since I needed to pump. For the past seven months she’s gone back and forth from breast to bottle beautifully. It eased up the pressure on me and helped make it easier on both of us! We still got to bond and be close, but others are able to feed her as well.

Before you take a pain pill, talk with your GI

Like many IBD moms, the fear of a postpartum flare and flaring in general weighs heavily on my heart and on my mind. I noticed symptoms start to creep up when Sophia was about two months old. I took a pain pill and reached out to my GI, only to find out I couldn’t breastfeed for the next 14 hours. At another point, I had to be put on Entocort for a week to help combat a small flare. Rather than try and be a superhero, I reached out to my GI immediately. While on the Entocort I had to pump and dump in the morning. It pained me to pour the “liquid gold” down the drain, but it’s what I needed to do to prevent a hospital visit. My kids needed mama present more than my baby needed a bottle of breast milk.

Supplementing is not failing

Whether you’re pregnant now, aspire to one day breastfeed, or if you’re in the thick of your journey, don’t make yourself feel like it’s all or nothing. For the first three months, Sophia was exclusively breastfed. Once I started introducing formula here and there, it took some of the stress off my shoulders. Was my diet providing her with the proper nutrients? Was she getting enough milk? I have my hands full with a toddler, so sitting next to a breast pump by myself with him running around isn’t all that conducive to my lifestyle. By making Sophia a flexible eater, it made breastfeeding seem like less of a struggle for me and a lot more doable for our family life.

Put your mental and emotional health first

59421BB3-A402-4678-819F-2A1751174DF6As a mom, it’s easy to beat ourselves up about how we choose to feed our babies. There is SO much background noise. Everyone has an opinion. As a mom who has formula fed and breastfed, I’ve had the opportunity to witness both sides. I’ve witnessed a shift within myself. Saying I breastfed felt and still feels like a bit of a badge of honor. Now that I’ve done it, I’m proud, because it was such a labor of love for me. Breastfeeding was blood, sweat and tears and so much effort. While traveling to San Diego I had no choice but to pump in a public bathroom at the airport, right at the sink, while a line of women stood staring at me. I had no choice. I think back to how drained and emotional I was on Sophia’s first night home and can’t believe we made it this far on our journey.

When we took our kids to the zoo last week and I mixed a formula bottle in the food court, I felt a sense of worry—that other parents would look at me and judge my decision to feed my baby this way. Even though in my heart, I know fed is best. There are so many mind games associated with it all!

In the end, if you’re struggling mentally and emotionally, it’s going to take away from the type of mom you are. Don’t allow yourself to get so caught up in the pressure that it’s detrimental to you or your family life.

Lean on fellow IBD moms

While I was pregnant and breastfeeding I found it incredibly helpful to touch base with fellow moms, specifically IBD moms who related to my journey. Do your “homework” and don’t be shy about sending private message or sending an email to ask questions to fellow parents who are patients that you see online. We are all a resource for one another. IMG-7814

In my case, breastfeeding ended up being something I’m so grateful I was able to do for nearly seven months. Unfortunately, once my period started after Sophia was six months, my supply plummeted greatly. I went from making 30-35 ounces a day, to five. Prior to that happening, we had gotten into such a comfortable, easy groove, I was planning on breastfeeding her until her first birthday. My body had different plans, and I’m fine with that. Flexible feeding brought me to this mindset. Pregnancy gave me a renewed love for my body, despite my illness, and now I can say breastfeeding did the very same.

BONUS TIP! Be proactive and set yourself up for success prior to your baby’s arrival. Order your breast pump ahead of time. Have nursing tanks and bras, hands-free bras for pumping and to sleep in, pads for your bra, nipple cream, a Haakaa for catching let down milk, and storage bags. If you’re dealing with extreme nipple pain or discomfort, alert your OB and see about getting a prescription for All-Purpose Nipple Ointment (APNO). This is mixed by a pharmacist and contains an antibiotic, an anti-inflammatory, and an anti-fungal. I used this and it worked wonders!

Dealing with Depression While Taking on IBD: Louise’s Story

No one feels their best when they are unwell, and this is no different for those with chronic illness. There is an ebb and flow to anything chronic – meaning there are good and bad days – but what happens when your bad days outweigh your good days?

In a Twitter poll I conducted this week asking fellow patients how IBD has impacted their mental health, 40% said they’ve experienced depression and it’s a struggle, while 60% said they’ve dealt with mental health issues from time to time. I found it telling that no one who responded to the poll said their mental health wasn’t impacted at all.

IMG_1807This week a guest post from 31-year-old Louise Helen Hunt from the United Kingdom. She was diagnosed with Crohn’s in 2011 and has undergone four surgeries in the last three years. Louise opens up about her struggles with mental health, while living with IBD and offers incredible perspective and words of wisdom that everyone in our community should be mindful of. I’ll let her take it away…

I hit rock bottom six months into my IBD diagnosis. I struggled to find a treatment plan that worked. This involved months of being in and out of hospital. I tried very hard to be positive, but I was sinking. I refused help, I didn’t want to talk about it and I certainly didn’t want any more medication.

Fast forward to 2018, six years since those first depressive episodes and I was still feeling depressed. I’d gone through two major surgeries very close together, came out with a stoma, struggled with my body image and was starting a new job. It was a stressful time and I was not coping. I needed help.

There are lots of emotions experienced by those who live with IBD, both positive and negative. Depression and anxiety come up often on patient surveys from various sources, rates of depression are higher among IBD patients as compared to the general population.Helen Blog

The balancing act of IBD and Depression

Depression is a serious mood disorder that causes feelings of sadness and loss of interest. Depression can make you feel exhausted, worthless, helpless, and hopeless. It can also make dealing with daily tasks difficult. Tasks associated with managing a chronic illness may even feel insurmountable.

Depression often gets worse if it is not treated. IBD specialists are encouraged to assess not just the physical symptoms, but also the emotional symptoms. These can be:

  • Persistent sad, anxious, or “empty” mood
  • Feelings of hopelessness, negativity
  • Feelings of guilt, worthlessness, helplessness
  • Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex
  • Decreased energy, fatigue, being “slowed down”
  • Difficulty concentrating, remembering or making decisions
  • Insomnia, early-morning awakening, or oversleeping
  • Loss of appetite, weight loss, or overeating and weight gain
  • Restlessness and irritability

Depression is treatable. It is important to seek out a counsellor who has experience in treating people who live with chronic illness. And while it can take some time for the symptoms of depression to go away, seeking treatment can help improve your mood, your quality of life, and your ability to cope with IBD.

This can be in the form of Cognitive behavioural therapy (CBT) – an evidence-based treatment for depression and anxiety, it works to identify and change negative thought patterns and behaviours which can contribute to depression – or medication management which can be used in addition to therapy.

How to handle depression when you’re chronically ill

  • Talk to like-minded people – this could be online, at a support group or your friends.
  • Keep a journal – getting your thoughts out of your head can be very taxing but ultimately therapeutic.
  • Take your prescribed medication regularly.
  • Remember there is no shame in needing or taking medication to cope with your symptoms.
  • Be active – whether this is running or going to the gym, even something as simple as a regular walk can help: being outside and feeling grounded – literally – can lessen some of the symptoms of depression.
  • If you are having a crisis, please seek medical attention. Be proactive and pick up the phone.
  • Don’t expect to “snap out of it.” Instead, expect to feel a little better each day.
  • Ask for and accept help from your family and friends.
  • Know that positive thinking will eventually replace negative thinking as your depression responds to treatment.

fullsizeoutput_1edfRemember that feeling better takes time, and that your mood will likely improve gradually, not immediately.

Connect with Louise on social media:

Facebook: Louise Helen Hunt

Instagram: @louisehelenhunt

Twitter: @louisehelenhunt

 

Three years of Lights, Camera, Crohn’s: 10 Tips for Becoming an IBD Blogger

Tomorrow (July 23, 2019) marks three years since Lights, Camera, Crohn’s became a reality. Three years since I closed my eyes and took a major plunge, wondering if my words and effort would make a difference. Three years since I decided it was time to stop living my IBD life in the shadows, and instead bring my personal struggles and triumphs to the forefront. A31AD785-CDF7-43D5-BA1D-BFDDC69B493EI chose to blog and become a patient advocate for several reasons. I was tired of feeling isolated. I wanted to be a voice for the newly diagnosed, as well as the veteran patient. And, as a journalist, I’ve always had a love for the written word. For me—expressing myself through writing comes a lot easier than saying the words out loud.

July 23rd is a big day on the calendar each year for me—it’s the anniversary of my Crohn’s diagnosis (14 this year!), my dog Hamilton’s birthday (He’s turning 11) and it’s the day I met my husband online (6 years ago!). If that’s not a sign that things happen in threes, I don’t know what is! Knowing this, I had to launch my blog on this day. Rather than focus on how many years I’ve been riddled with a chronic illness, it’s a way to celebrate how far I’ve come on my patient journey.

I’m going to do a little humble brag right now. Since launching my blog in 2016, I have never missed a week of posting fresh content. Through two pregnancies and being a stay at home, IBD mama with a now 2-year-old and six-month-old, I found a way to stay true to my own personal deadlines, because this blog, and this community and IBD family are so important to me. 41113C90-2C99-4252-B69B-212DB2295A33In that time, I’ve shared 171 new articles (because some weeks I post on Mondays AND Wednesdays). Over the last three years, more than 105,000 people from around the world have checked out Lights, Camera, Crohn’s. Could the articles be organized better? Yes. Could the design be snazzier? Yes. But, my focus as an IBD blogger and advocate is to give you the nitty gritty. I’d rather spend my time and energy on content vs. design.

One of the most common questions I receive is, “How do you become a patient advocate?” or “How do you become a blogger?” It obviously takes time, passion, and commitment.

Here are my top 10 pieces of advice for you, that I wish I would have known before blogging.

  1. Write for the reader and for yourself. As patient advocates and bloggers, it’s generally our own personal experiences that shape the content we share. That experience and viewpoint is invaluable, but remember—the reader isn’t here to check out your diary. They are here to learn ways to improve their patient journey, to educate themselves. When you write, write to the people reading. Don’t bore them with every.single.detail. of your doctor appointment. Use that experience as the foundation and springboard into a larger discussion that is easy for others to relate to. Think “news people can use”…otherwise, why read your stuff?
  1. Be bold. Be vulnerable. It can be very stressful and overwhelming to put your whole health story out there to the public. If you’re like me, I kept my disease to myself and close family and friends for a decade. Going from that—to sharing my story with thousands, is polar opposite. But, I can tell you, once you open up, you won’t regret it. The moment you break down your own barriers and show your true stripes, you open yourself up to endless support and quickly come to realize how many others understand your reality.
  1. It’s not a competition of the sick. Just because you haven’t started a biologic, just because you haven’t had surgery, just because you don’t have a bag, doesn’t mean your patient journey is any less significant or important. IBD impacts each and every one of us differently, but there are so many parallels along the way. Trust that what you are going through physically, mentally, and emotionally is something many people can relate to. I haven’t been hospitalized for my Crohn’s since August 2015 (before my blog went live!), but in my 14 years living with the disease I’ve experienced so many highs and so many lows, so many flare ups and so many feel good days. It all matters. And it’s all a part of it. People don’t just want to see you in the hospital or struggling, they want to see other aspects of your life, too.
  1. Be patient with yourself through the process. Writing about life with IBD can be emotional. It can be draining to bring up old memories that were the most difficult days of your life. It can also be cathartic. Write stream of consciousness-style. Rather than thinking about each word and constantly hitting the delete button, just let it flow. Edit yourself later, not in the moment.
  1. Have a thick skin. Being a patient advocate and a blogger isn’t always sunshine and rainbows. You are going to receive both public and private messages from naysayers. People may question why you aren’t “healing yourself with food” or “why you need a biologic”. The only person you need to answer to is the person looking back in the mirror, along with your physicians. No matter how much you share online, no one has the FULL story of your own personal experience. Let the judgers, judge…and keep on trucking. Keyboard warriors have a way with words, don’t allow others to bring you down or stress you out. That’s the last thing we need living with IBD. I’ve come across a few instances on Twitter, where banter got pretty heated. When my heart started racing and my stomach started hurting, I knew it was time to block them and move on. Don’t be afraid to block when needed.
  1. Remember you are a patient, not a medical professional (unless you are both!) It gets dangerous when patient advocates spout off medical advice to those desperately looking for answers. When people come to you for support or with questions about how to handle their care—always advise them to talk with their care team, and remind them you are not a doctor, but this is what has worked for you. Yada Yada Yada.
  1. Lean on others in the IBD family for guest posts/sharing your content on social media. Advocacy is not a competition. There is room at the IBD family dinner table for ALL of us. Interact with other people’s blog articles and social posts. Show them the love, chances are, that love will be reciprocated. Oftentimes, it can feel like everything you are doing is falling on deaf ears (thanks so much, Facebook algorithm)…that being said, don’t focus on the “likes” and the “comments”…if your article or your words help one person or one family, you’ve made a huge difference.
  1. Always be on the lookout for content. The former TV news anchor and reporter in me always has my eyes and ears open for the next story. Look at social media and see what’s trending in the IBD community. Ask your followers what topics they’d like to see more on. Set up Google Alerts in your email to see the latest about IBD research and news. Pay attention to people’s stories. When someone reaches out to me with a question, I often dig a little deeper and see if this is something that would make for a good article. Every single person has a story to share, it’s just a matter of discovering what that story is.
  1. Be authentic and true to who you are. Oftentimes businesses and companies will reach out to patient advocates looking for promotion or support. Don’t be a “yes-(wo)man”. Only promote causes and products that you genuinely believe in. Don’t sacrifice your hard-earned credibility for a few bucks, because your credibility is priceless.
  1. Stop selling yourself short. Your IBD life and story is valuable. Gone are the days when big pharma and businesses can tap into us as resources for free. We’ve all gotten smarter about this. Your painful journey hasn’t been easy. But, with that journey, you’ve gained a perspective that businesses are thirsty for. They NEED our insight. They NEED our input and perspective. Unless you live with IBD personally, you can’t fully grasp what it’s like. Sure, volunteer work for the Crohn’s and Colitis Foundation is one thing, but as soon as someone wants you to be an “influencer” or speak at an event, etc. know your worth and don’t ever be afraid to ask what the compensation is.

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I’m hopeful that three years from now on July 23, 2022, I’ll still be blogging and will still be a vocal voice for the IBD community. Thank you for sharing in my journey and for pushing me to be better. Thank you for reading and for caring. Thank you for being a listening ear and a watchful eye. Thank you for walking alongside me through pregnancies and motherhood as a woman with IBD. I promise to deliver more content that helps guide you through your journey and show you just how capable you are of being everything you ever hoped for. God bless.

XO,

Natalie