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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Holding on to the hope of breastfeeding

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

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

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

From flaring to remission

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

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

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

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

 

IBD on the College Campus: The Social Burden

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

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

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

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

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

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

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

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

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

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

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

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

Tips for students to calm the social stress

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

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

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

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

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

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

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

 

 

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

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

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

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

Dr Fu

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

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

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

Other recommendations that may be of help to you:

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

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

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

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

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

IBD on the College Campus: 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 pain medication adds to your IBD troubles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.