An ode to Dads: A letter from a father of four with IBD

I’d like to give a shout out to all the dads out there who have inflammatory bowel disease, yet persistently persevere to make life happen. christian3  

I have been dealing with UC/Crohn’s for 18 years now, and in that time, I have had seven surgeries, countless procedures, two near death experiences, my colon removed, a j-pouch, my ego scared, and my relationship with God strengthened.  I’ve tried every prescription drug, had every side effect, and continue to fight the good fight on a daily basis. christianI’ve also been blessed with a beautiful wife and life partner, as well as four amazing children (10, 7, 3, and 9 months). This takes an already difficult situation, and adds more “life” responsibility as well.  

You see, as a father, you place the needs of your family and children above your own.  A father doesn’t really get a day off. And when you’re dealing with health issues that can cause daily battles, it’s easy to find yourself in a place of self-pity, weakness, or doubt.  That’s why I’m absolutely amazed to see the strength of all the dads out there that can deal with this struggle, but continue to be a dad first, push through, and ensure that “life” still happens. You see, Crohn’s doesn’t mean you can miss baseball practice, the soccer game, the anniversary dinner, or just “life” in general. Life will go on with or without you, so all those with chronic illness are heroes in my mind.   In fact, being a father of four has been the most motivating and rewarding things we could have done as a family. christian2

I can remember when I was recovering from one of my more recent surgeries, my family came in to visit me in the hospital.  Like most fathers, I felt the need to provide for my family, get back to work, I just had to get going. I just didn’t have time for this!  There are MORE than enough reasons for everyone impacted by IBD to feel defeated, want to give up, or take an easy route. My family is a CONSTANT motivation for me to keep going and keep fighting the fight. I cannot and will not let them down. I think most fathers feel that way. We are here to help shape our children, and ultimately provide the ability to learn, have fun, be kids, and eventually mold them into productive members of society.  It’s a tall order for us all, but I think men with IBD have learned to be persistent with their health battles, and that also helps us to persevere through the trials and tribulations of fatherhood.

So today and every day, I commend all of those fathers who refuse to let their disease dictate their life.christian4 Take the time to get to know a father with IBD, and you will meet one of the most courageous strong willed people in the community. As a man, we can sometimes let ourselves down because as an individual, it just impacts me. But as a father, that is not an option.  We must persist, have faith, and fight the fights every single day, so that we can continue to mold and shape our children, and provide support and guidance for our families that mean absolutely everything to us.  

We are motivated, we are strong, and we have IBD.  Above everything else though, we are blessed to be a father, and if lucky enough, a dad.  

Finding strength through your IBD tribe

Back in the fall, I had the privilege of sharing the stage with a fellow IBD advocate in the St. Louis area during a Crohn’s and Colitis event. Her name is Kelli Young. Kelli has battled Crohn’s disease for 28 years. She’s a veteran to the game, and has incredible perspective about how IBD not only shapes our lives, but dictates the kind of people we become. This week—a guest post from Kelli about why finding your tribe—an empathetic support system—makes a world of difference.

It took over a year and a half of being prodded and poked in every orifice of my body to receive the diagnosis of Crohn’s. I received the devastating news eight days before entering my sophomore year in college. IMG_1076The excitement of knowing “I’m not a hypochondriac” was overshadowed by the fear of having a “poop disease”. You see, my first year of college, I became best friends with my Suite mate. Ironically, she too battles Crohn’s. I was 20 years old, diagnosed with a disease that had no cause and therefore no cure…how can that be? Why me? What am I going to do?  I didn’t even know how to swallow a pill. I was never the sick kid! Now, I had to take 24 pills a day, which sometimes would take me an entire hour to swallow one dose, throw up, re-swallow again. Three times a day. It was as if I had entered “hell”.IMG_1077

Six month after diagnosis, I came home from college for winter break.  Tipping the scale at a whopping 75 pounds, my body was too weak to undergo surgery. For 45 long days, I received all my nutrition through an IV. This was so my bowel could rest as I prepared for a colon resection. The surgery was my only hope for living a more productive life.

What I’ve learned after nearly 30 years with IBD

Fast forward nearly three decades—and through the years, I’ve been labeled as “the complicated” patient. I’ve undergone multiple surgeries which include: three colon resections, gall bladder removal, appendectomy, countless ERCP’s and fistula repair. Can’t forget the life-saving blood transfusion I needed after my colon ruptured, causing me to lose half my blood volume. I dealt with TPN (Total parenteral nutrition)/bowel rest for each of the three surgeries. 45 days was my longest duration on NPO(no food). 30 days was my longest hospital visit. For the last 28 years, my body has had medication dumped in it.

My generation was taught differently. IMG_1078Which made my journey with the disease a little different than today. I was raised to think “only the weak complain!”  “Someone always has it worse!”  “Suck it up butter cup”.  “If you want the job done right, do it yourself”. This made me look at the situation as this was “my” disease, “my” problem and I don’t want to make anyone worry about me or feel sorry for me!  I became a master at hiding the disease and a master at hiding the byproducts of the disease.

It has taken me decades to evolve. Six years ago, I realized, I had to create a better “village” for myself. And my voice was starting to be heard. I just wanted my peeps to treat me as an equal, no matter how many bowel movements I’ve had that day. And most importantly, yearning for support and compassion, not to be mistaken for pity or despair! During my evolution process, big sacrifices had to be made. As a mother of two, I had more than just myself to think about.

The power of transparency

Today, transparency has set me free. Free from the misconception that I’m “lazy”. Free from the labels placed on me because of my thin statured frame. Free from the worry of how others view me. And free to live my life.

Today, I am able to share my journey with an audience that might share a similar experience or with an audience that has a loved one with Crohn’s Disease. I share my story, with the hope of inspiring others and showing anything is possible.

My disease has made me who I am today. It has taught me that I am strong, determined, confident and secure. kelliI’m a proud mother to two amazing children. I carried and gave birth to both of them with zero complications. I’m a business owner of a successful insurance agency, which I established 4 years after diagnosis. I didn’t allow my disease to derail my professional aspirations. I’m an active mother and manage to find time to be a room mother and Girl Scout cookie manager.

As a patient advocate, I serve on the board of the MidAmerica Chapter of the Crohn’s and Colitis Foundation, in addition to other professional boards. I value the good days! I reflect on my bad days and listen when my body tells me to slow down and get rest.

My advice to you

If you’re newly diagnosed or in the thick of the battle, it’s important that you realize… “this is your normal”. Embrace it! Accept it! Own it! Speak about it!!  Get a “village” that gives you positive support, not to be mistaken for negative attention. If I can get thru this crazy game of life with Crohn’s disease, so can you!  Don’t let the disease define you.

While I know my journey will include the daily struggles from the disease, it no longer is my hidden secret. My village knows and loves me for me. They understand the disease and ask questions to understand it better. This is not just my “problem” any more. As we all patiently wait for a cure, it is important we speak up, join together and help one another.

Reflecting on two years of marriage with IBD

Two years ago today, I married the love of my life. The man who has been by my side through multiple hospitalizations, flare-ups, surgery and day-to-day management of my Crohn’s disease. Prior to walking down the aisle, we shared vows during our “first look.” Here are a few lines from my vows:

photo by J Elizabeth Photography www.jelizabethphotos.com“You’re an incredible partner—you’re my rock when I’m sick and you know how to lift my spirits when I’m down. You have a way of easing my worries and bringing me clarity when I’m uncertain. Each day spent with you—is an extraordinary blessing. I feel so incredibly lucky that God brought us together and chose you to be the one person among millions who lights up my soul.”

When you battle inflammatory bowel disease, it’s a big part of your relationships. As a family, Bobby and I focus on one another, our son and managing my disease. It’s a team effort. It’s comforting to know that when I’m not feeling well or going through a difficult part of my disease journey, that I can lean on my husband for strength and support. Just this week, I was struggling with symptoms. Countless bathroom breaks. Relentless gnawing cramps that bothered me for hours. My husband always checks in on me—lightly knocking on the bathroom door to make sure I’m ok. Texting me while I’m stuck in there, bringing a smile to my face with funny emoji’s and sweet talk.

It’s the little things. The day-to-day management that many do not see and that can be easy to take for granted. Our caretakers, our main sources of support and comfort do so much—effortlessly. IMG_0324_1At times, living with a chronic illness and being the one who doesn’t feel well, can bring about guilt. It also brings out the best in us. When I’m vulnerable and need a boost, I see my husband rise up to the challenge, time and time again. I’m constantly reminded I chose to live my life alongside someone who has more compassion in their heart than I knew imaginable.

Tonight, I’ll give myself a Humira injection. Tonight, my husband will stand in front of me like he always does, cheering me on and holding onto our son, so I have a focal point of inspiration. Each injection, as I stare intently at my guys, I tell myself I need to be strong for them. I tell myself I need to do all I can to stay healthy and out of the hospital. I tell myself anything is possible with them by my side.

So, as we celebrate two years of marriage and nearly five years together, I reflect on how far we’ve come as a couple, as a family and how our love has grown as a result of my illness.

Oftentimes it’s life’s hurdles that provide the greatest perspective, the strongest insight, and the clarity that you’re exactly where you need to be in this life and that your disease is a part of you, but you are so much more. IBD does not need to rob you of love. It does not need to prevent you from getting married. And it certainly does not need to stop you from finding your fairy tale ending.

Help manage your IBD in the palm of your hand: Oshi Health launches first all-in-one mobile app

Managing inflammatory bowel disease is no small feat. Whether it’s determining which foods and drinks are your triggers, tracking your fatigue, staying on top of medications, keeping all your doctor’s appointments in order…the list goes on, and it’s a lot. Oftentimes as patients, we have so much to juggle in our everyday life that we can lose sight of when our bodies give us signals that a flare up is on the horizon. It’s can be easy to hide behind a smile and ignore symptoms. Your normal is different than the average persons. Your pain tolerance, perspective and the way you experience life are unique. Most people don’t have to put so much thought into meal time and think of bathroom breaks as a stress.

This is where Oshi Health’s new mobile app comes in. Logo with DARK letters OSHI HEALTHThe app features tracking, curated learning, and expert Q&A. Click here to watch a short YouTube video about all the app has to offer.

As a blogger and patient advocate, I’m thrilled to be one of the contributing writers featured on the app.  You’ll find new articles from me pertaining to dealing with the diagnosis, friendships, relationships and motherhood with IBD. The exclusive content features real-life s  buccess stories, easy-to-understand information on emerging treatments, and delicious IBD-friendly recipes.

Keeping track of daily factors—such as sleep, diet and exercise, along with symptoms can help us better understand the causes of our flare-ups and how to best achieve remission.

The all-in-one app’s features include:

  • Fresh Content: Daily doses of inspiration and information
  • Tracking: Short-term and long-term trends including well-being and symptom scores
  • Integration: Compatibility with leading fitness devices, sensors, and wearables
  • Reminders: Helpful notifications to stay on track with IBD wellness
  • Surveys: Bi-weekly progress checkpoints
  • Expert Q&A: Professional feedback from gastroenterologists and medical professionals
  • Security: Best-In-Class data privacy with state-of-the-art encryption

“Oshi is a free mobile app that empowers individual control and understanding of IBD wellness. DanWeinsteinOshiHealthOshi has the potential to significantly improve lives with smart tools to manage and control Crohn’s disease and ulcerative colitis,” said Daniel Weinstein, CEO, Oshi Health, Inc. “Oshi’s easy-to-use, best-in-class tracking and insights tool will allow patients to work with their physicians to uncover hidden patterns to figure out what triggers flares for their unique bodies.”

The app’s “Ask the Experts” feature further supports your digital experience as a patient or a caregiver. A team of gastroenterologists and health professionals will provide moderated feedback on key questions. You can find answers to your questions right at your finger tips from sources you can trust.

As someone who has battled Crohn’s disease for 13 years, I’m excited an app like this is on the market. I wish I had a tool like Oshi when I was initially diagnosed. A tool that recognizes my needs and concerns. A tool that empowers me to be my own best advocate and stay on top of symptoms. This app is great to have in your back pocket as you attend doctor appointments. You can look at all your information you’ve tracked and be able to communicate clearly what your needs are and where your concerns are. We now have the power to advance our own health care and give our gastroenterologists a clear look at the back story of our day-to-day lives. It’s easy to use, intuitive design, makes managing IBD feel like much less of a chore.

OSHI is now available for download on the Apple App Store or Android Google Play.

Apple iOS: https://bit.ly/Oshi_iOS

Android: https://bit.ly/Oshi_Android

Click here for more information about Oshi Health.

 

Finding “Hope” and grace through motherhood and IBD

Connecting with women who battle inflammatory bowel disease and juggle it all is empowering. When I came across Hope (@hopeheartandhome) on Instagram, I was immediately impressed by her upbeat, real-life look at life as a stay at home, wife and as a blogger. Weeks passed by—and she mentioned she had Crohn’s disease in her in Insta-story. I sent her a direct message because there’s so much we can learn from one another as we navigate motherhood and life in general with inflammatory bowel disease. IMG_2070 (1)I specifically was interested in featuring Hope because she’s pregnant with baby #2!

Hope is 28 and lives in Charlotte, North Carolina with her husband and two-year-old daughter, Evie. She’s due with her second baby this October. August marks 10 years since she was diagnosed with Crohn’s disease. In getting to know Hope, her name fits her to a T. She is inspiring, driven, funny and focused on living her best life—despite her disease.

Like many of us, Hope was young when she received the life-changing diagnosis. At only 17—she had her entire future before her. In November 2012, after numerous hospital stays and an abscess that would not go away with IV meds, she had surgery to remove her ileum. Unfortunately, post-surgery she faced several complications ranging from a pinhole leak, surgery to repair the leak, as well as a serious case of MRSA. Hope says thanks to her faith in Christ and the support of family and friends, she came out stronger than ever with a 7-inch battle scar to prove it! Hope has been taking Cimzia injections ever since and has been able to maintain remission.

As a woman with IBD–did your Crohn’s present any complications or issues along the way with your first pregnancy?

Hope: “I answer this with an insanely grateful NO! I am extremely blessed that my body reacts so well to pregnancy. In fact, my gastro doctor often teases me that I need to have alllll the babies because my body loves being pregnant. I say this with sensitivity, as I know it is a struggle for many women and due to surgery IMG_1446complications, the doctors I saw were pretty sure I would have difficulty conceiving; however, I am so thankful that God has given me grace in that aspect of my life. I will say that my first pregnancy was a bit of an “oops”, BUT my body was in 100% remission and I believe that greatly contributed to my success. This time around—knowing that I wanted to get pregnant, I made appointments with my GI and had blood-work, a colonoscopy, and wound up having to have an MRI to rule out any potential flare up. Thankfully, I was flare free and my doctor gave us the “ok” to try and conceive. I attribute much of our success to my remission. A healthy mom has a much greater chance of conceiving successfully in terms of Crohn’s Disease.”

How has Crohn’s impacted your role as a mom and a wife?

Hope: “Wow. This a big question! I’ve honestly never really thought about it impacting these roles of mine. I see Crohn’s as a little portion of who I am. It’s a very unglamorous and annoying part of me that I don’t like…but, it’s a part of me and therefore my story. Truthfully, I have been so blessed to have been in remission for about four solid years now, so my roles of wife/mom haven’t been altered by it, and for that I am extremely grateful. It was a long and bumpy road to get here and I would be lying if I said the thought of having a flare up doesn’t terrify me. IMG_1914It definitely does, BUT I try to live my life with as much positivity as I can and a lot of laughter. I’ve found that Crohn’s has matured me far beyond my age in years and that has helped me navigate the endless responsibilities that come with being a young wife and a young mother. I never take health for granted and I am thankful every day for the opportunity to raise my child(ren) free of feeling sick. I get fatigued faster than the average person due to Crohn’s, but I am so used to it, it’s my normal. Also, have you ever met a mom who is full of endless energy?! Nope.”

Now you’re pregnant with baby #2, first of all HUGE congrats! How has this pregnancy compared to your first one–how are you feeling in comparison, etc.?

Hope: “Crohn’s-wise I feel wonderful and am experiencing zero symptoms. Pregnancy wise I am much more exhausted this time around thanks to my full of energy little two-year-old! Second pregnancies are very different… the “newness” is gone, and you know what to expect and I haven’t had a minute to daydream about this baby as often as I did with my daughter, but that’s because she keeps me busy! We’re excited to see if a little boy or another little girl will be joining us this fall!”

What advice do you have for women with chronic illness who aspire to be moms themselves?

Hope: “Patience and prayer. God hears our every thought and I truly believe He desires to give us the desires of our own hearts. The biggest thing I have learned in my life as a Crohn’s girl is that our timing is not our own. IMG_2023We must surrender to Christ and let him lead us through the highs and the lows. If you aren’t a person of faith, my prayer for you is that you find peace in either the waiting of becoming a mom or peace in the journey of motherhood. It is not easy at all, but it is so worth it, and I pray for every woman who might be struggling to carry a baby because of this disease. It truly breaks my heart to think about that suffering. When I was pregnant with Evie, I joined a study called the PIANO study which stands for Pregnancy and Neonatal Outcomes in Women with Inflammatory Bowel Disease I answered questions during pregnancy and at birth I brought in a lab kit where we sent off blood from me, from Evie, and from my umbilical cord, to study if any of my medications got to my baby. There was no trace of Cimzia in Evie’s blood or the umbilical cord which was wonderful and a big part of why I take Cimzia, as it does not pass the placenta. But, I mention this study to share my passion to help all women with IBD reach their dream of motherhood. I crave more information about this disease specifically for those moms struggling. Know that you’re not alone and you have many people rooting for you and your future babies!”

How do you find time to focus on self-care and combat the fatigue associated with not only motherhood, but IBD?

Hope: “I have not mastered this at all, but I am trying. Working out is something I do for me…my 45 minutes of endorphins, alone time, and knowing I am fueling my body. Open communication with my husband is another thing that helps me focus on self-care. If I am feeling exhausted or just needing some time, I tell him. We must communicate on how I am feeling to fully be a team. And hey, same goes for him! I’ve learned a lot about friendships/relationships and making sure that I set my time and energy on things and in people who are truly rooting for me and my family and vice versa. Life is too short to spend it stressed out or surrounded by people who are not life-giving. That’s been a hard lesson for my people pleasing self, but, being strong in my beliefs and in who I am and what I want to put out into this world has helped my mindset and overall health tremendously.”

Tell me about your blog Hope Heart and Home. With more than 11,200 Instagram followers you must keep busy! What inspired you to start the blog? 

Hope: “This blog was originally started by my sister and I actually had my own blog, but once image1 (10)Evie was born, my blog kind of fizzled and after awhile I was missing that creative outlet. My sister was pregnant with her second at the time and we decided to join forces and it was so much fun for us! Recently, my sister has taken a step back from blogging and is pursuing different passion and focusing solely on her family, so the blog has evolved again into an outlet for me. I am an extrovert and love talking with new people/sharing recipes/getting advice/looking at the newest trends/home decor/etc. so blogging just seems like a good fit for my personality. I am a stay at home mommy first and foremost, but the blog has allowed me to have something else that’s just mine and just for me.”

Interested in connecting with Hope? You can do so by emailing her at: hopeheartandhome@gmail.com or following her on Instagram (@hopeheartandhome).

 

Addressing compassion fatigue as a patient advocate

Every hour of every day we live with inflammatory bowel disease. Once you hear the diagnosis, it’s a part of you… every. single. moment. of. your. life. That alone—feels isolating and scary. When you decide to share your personal patient story publicly, you open yourself up to a world of support. Natalie-7As a patient advocate, you also become somewhat of a confidante and voice of reason for your peers in the community.

While it’s incredible to be able to connect with those who live your reality, there are times it can feel overwhelming. Personally, as a patient advocate, who’s battled Crohn’s disease for nearly 13 years, I consider myself well-versed on the topic—but, all I know, are my own experiences. IBD presents differently in every person. Part of being a patient advocate is showing support for others living your same reality. The girl in the UK who was recently diagnosed and nervous about heading off to college. The young man in Nebraska going through a bowel resection surgery. The kindergartner receiving her Remicade treatment.

Since my bowel resection surgery in August 2015, I’ve been able to manage my disease with daily medication and a biologic injection. Luckily, I’ve felt well most of the time since then, and haven’t been hospitalized since my surgery. That being said—when friends (many who I’ve never met) and strangers reach out—through email, Instagram, Twitter, Facebook, texting…you name it…round the clock…desperately asking for advice and support…my heart sometimes starts to ache with stress.

I want to be sensitive with how I word this article, because the LAST thing I want is for people to stop reaching out when they need advice or support. Photo by J Elizabeth Photography www.jelizabethphotos.comWhat I do want—is for people to recognize what compassion fatigue is…and how as chronic illness advocates and caretakers we need to be mindful of how we’re feeling and internalizing the struggles of those around us.

The overwhelming nature of compassion fatigue

When people ask me about my diagnosis, my bowel obstructions, my surgery… it draws a great deal of emotional energy, and at times, can open up proverbial wounds. I’m happy to share my patient journey with transparency and honesty. But, day after day, year after year, these conversations can be a burden. A burden because I truly worry and care about each person I talk with. Even if I’m feeling well and in remission—the disease stays top of mind and I start to question my own well-being and health.

Like everything in life, finding balance and making time for self-care is paramount. The IBD family is a fantastic community of support. I am just one piece of the advocacy puzzle. It’s all about maintaining that balance in a healthy way, recognizing when the fatigue is taking over—and knowing when to take a breath and step away. I’m much better able to connect with people when I’m recharged and energized. If I’m at the end of the rope all the time, I simply don’t have anything to give, and everyone loses.

blog photoI offer support from the bottom of my heart, but as a mom and a wife, I do need to recognize when it’s time to unplug and take time for myself. When my baby naps each morning—I spend that “break” on my computer writing articles about IBD, participating in Twitter Chats, and talking on the phone with those who want to hear about my patient experience.

Recently, my husband said we should start a new rule in our household, no phones after 8 p.m. I was thrilled with the idea. So often when we put our son to bed we resort to hanging out on the couch, with the TV on and phones in our hands. Much of that “free” time I used to spend responding to messages from those seeking IBD support. Sometimes you just need to put down the phone and recognize how important those right in front of you are. The people who are by your side every single day. Your family. Your caretakers. Show them the love and the attention they deserve. Nurture the relationships that matter most to you. Be present in the moment.

Compassion fatigue ebbs and flows. Like anyone who battles fatigue from IBD, some days I feel like I can take on the world and spend all my free moments on the phone or responding to emails. Other days it takes A LOT of effort for me to email back someone who I’ve never met and discuss why I chose Humira, how my pregnancy was with Crohn’s, etc. Time is precious. I absolutely hate not responding almost immediately to everyone who reaches out, but please be patient with me.

IMG_0535As part of my self-care and disease management I need to de-stress, so I don’t put my own health at risk. This article is painful for me to write—I can’t stand admitting that I am struggling to do it all. But, compassion fatigue has been something I’ve been feeling for a few months. I want to be the best advocate for others and do all I can to make a difference and show there’s so much life to be lived outside of your disease. I want you to see how much you can thrive with this disease and all that you can accomplish. I want to be the person I needed the day my world turned upside down when I was diagnosed. I want to be all the things. But it’s not possible. It’s not fair to me, it’s not fair to you.

My call of action to you

When you reach out, if it takes a few days for me to respond—don’t think it’s because I don’t care or won’t reply. I will. If you have questions about why your prednisone is making you feel a certain way or how to do a colonoscopy prep—check with your GI first. Oftentimes many questions and concerns are covered extensively on blogs and in articles—a simple Google search may give you all the information you need. Lastly, know my concern and wish to help is genuine, but there’s only so much of me to go around.

I’ve been in the hospital bed. I’ve been too weak to walk up a few stairs. I’ve been on 22 pills a day. I’ve sat on a news desk and anchored countless shows while dealing with my disease in silence. I’ve woke up on my wedding day unsure of what my disease would do. I’ve been pregnant and dealt with the fear of flaring while creating a life. I’ve done a lot as a patient and a person. So, when I’m feeling well and trying to enjoy the feel-good days that I have…that can be taken away in the blink of an eye, please understand that I’m here for you, but need to also take time for me.

I’m going to leave you with this quote from Daniel Garza, an AIDS, Cancer and Ostomy advocate. Daniel shared this eloquent description of patient advocacy during the HealtheVoices conference I recently attended in Chicago.

“We all have this fire. We’ve been in quick sand and high tides and made it to the end. Despite the doubts, after everything, we don’t want other people to go through it. We’re the coat we put on the puddle, so people don’t get their feet wet. We don’t care if we get dirty again.”

In closing, allow me to continue to be that coat on the puddle for you, but please have a little patience with me.

APPLY NOW: Lyfebulb & UnitedHealth Group launch first-ever Innovation Challenge in IBD

As patients, we have power. We have the ability to use our experiences to shed light on the constant uphill battles we face in all facets of life as we take on inflammatory bowel disease. LyfebulbXUnitedHG Summit&Award YellowWe have the opportunity to serve as patient advocates and leaders in our respective health communities and be a voice for those who suffer in silence. As advocates, we can share the challenges and the triumphs. We can articulate where the roadblocks are, where we struggle and come up with lifechanging solutions—not only for ourselves, but countless others.

This is where Lyfebulb and United Health Group come in. They recently launched the first-ever Innovation Challenge for Inflammatory Bowel Disease. The Challenge will recognize and award top patient entrepreneurs developing innovative ideas for better management of IBD using healthcare information technology, medical devices, consumer products or services. Get this—the top three winners receive $25,000, $15,000 and $10,000 respectively!

I had a chance to chat with Lyfebulb’s, CEO and Founder, Karin Hehenberger, M.D., Ph.D. about the Innovation Challenge for IBD. Karin says, her main mission is, “to reduce the burden of IBD, by accelerating the pace and adoption of innovation in the disease state, while raising awareness for the conditions.” Karin Standing -2

Karin is a chronic illness patient and advocate herself. Quite simply—she gets it. She lived with Type 1 Diabetes for nearly 20 years before she decided to share her story. Complications of her diabetes led her to need a kidney and pancreas transplant. Through these challenging life experiences, she found her passion for making a difference.

“My intense personal experiences enabled me to realize key insights. I started thinking about how many daily issues I had lived with as a person with T1D and came to the realization about how my own patient journey and professional expertise, could help drive research and innovation.”

In years past, Lyfebulb has held these types of challenges for diabetes and cancer. Past winners invented everything from a clever solution to ensure injected insulin was still potent and had not gone bad due to storage issues to creating a natural and better bone replacement device for those battling cancer who have experienced bone deterioration.

Much like those diseases, IBD impacts all areas of life. Karin believes there is still much we can do in the IBD space when it comes to awareness and education. It’s her hope this Innovation Challenge for IBD will help raise the level of attention on the complexities and challenges facing those of us in the patient community.

How to apply

You are eligible if:

  • You work on innovative ideas and concepts for better care and management of IBD using healthcare information technology, medical devices, consumer products or services; and
  • You, or a family member of loved one, live with IBD; and
  • Your idea is something other than a pharmaceutical or diagnostic innovation.

Click here to apply. The deadline to apply is Thursday, June 7 at 11:59 P.M. ET.

Judging criteria

Lyfebulb and UnitedHealth Group will gather all submissions and will review them for eligibility.

The judging panel will look for evidence in the following categories:

  • Patient Entrepreneur story
  • Degree of innovation
  • Impact on patient needs
  • Feasibility of development and implementation

Lyfebulb_April_2018_rb_0172lyfebulb_april_2018_rb_0172From the submissions, 10 finalists are selected to present at the Innovation Challenge in late July. All finalists are flown to the summit in Minnetonka, Minnesota and treated to two days of interactions with other finalists, the jury and with Lyfebulb and UnitedHealth Group employees during one on one meetings, group meetings, presentations and meal gatherings.

If you are chosen to attend the Innovation Challenge summit, you will pitch your idea in front of the jury and audience composed of Lyfebulb, UnitedHealth Group members and invited guests. Best of luck to all the applicants. As a Crohn’s patient of nearly 13 years—thank you for going above and beyond to make a difference in the lives of others!

 

Yes I have a j-pouch, yes I still have IBD

Ah, the misconceptions surrounding inflammatory bowel disease. There are a laundry list of beliefs, thoughts and mindsets that blur reality. Misconceptions, while often not malicious, can have damaging effects. shawn6As a Crohn’s patient myself, I hear all too often that people believe once someone with ulcerative colitis has their colon removed…that they are cured. This is simply not the case. This week, I hand over the reins to my friend, fellow Patient Advocate and  blogger, Shawntel Bethea. As someone who battles ulcerative colitis, she offers insight into life with a j-pouch. I’ll let Shawntel take it away…

I started experiencing symptoms of IBD as a child and I was officially diagnosed with ulcerative colitis as a teen. My life was forever changed. For a while, it seemed as if my life had become a constant battle between myself and my symptoms. By age 22, I had tried (just about) every medication on the market. I tried “natural healing.” I tried crazy theories I found in a Google search. I also tried steroids, pills, injections, infusions, you name it. shawn2After failing Entyvio, my doctor recommended surgery. Well, three surgeries to be precise. The ileal pouch anal anastomosis (IPAA), also known as the “j-pouch.” Fast forward more than four years since that conversation, three years post completion of the surgeries and here I am! Cured, right!? Wrong.

There is no cure for IBD

Although there are misconceptions and misinformation that state otherwise, having a j-pouch is not a cure and shouldn’t be presented to patients as such. The j-pouch is an operative approach. The j-pouch is a treatment option and for me personally, my j-pouch has given me a second chance at life. shawn4But I am not cured. I still have IBD. I am still coping with autoimmune disorders and I will likely be on medication(s) for the rest of my life. Does that sound like a cure to you?

Still not convinced? Let’s see what IBD specialists have to say about the topic. At the 2017 Advances in Inflammatory Bowel Disease (AIBD) conference, I had the chance to ask Dr. David T. Rubin, an award winning, board-certified gastroenterologist and IBD specialist who also serves as a Co-Director of the Inflammatory Bowel Disease Center at the University of Chicago Medical Center, a few questions regarding the issue. I asked Dr. Rubin how he refers to his (ulcerative colitis) patients post-colectomy. He simply stated, “they are IBD patients.” He expanded on the topic by mentioning that removing the colon does not address the immune system and issues related, also speaking on the complications that may come along post-op and/or in the future..

I also spoke with Dr. Peter Higgins. Dr. Higgins is the director of the IBD program at the University of Michigan. Dr. Higgins is also a board-certified gastroenterologist, specializing in IBD. I started by asking Dr. Higgins the same question, I wanted to see what he classified his ulcerative colitis patients as post-colectomy: does he consider his patients cured of IBD entirely? He said the same thing as Dr Rubin. Stating post colectomy, he definitely still considers people as IBD patients. Continuing on to say, “All ulcerative colitis patients have autoimmune intestinal disease. The genetics and the state of the gut immune system do not change after colectomy.”

shawn5IBD is not black and white

It’s much more than just Crohn’s and Colitis. There is much more to consider than just the colon and/or the immune system. There is no cure for any form of IBD. Patients should be aware of this. As Dr. Higgins stated, “70-90% of patients will feel (nearly) ‘cured’ if expectations are set properly.” A j-pouch is a treatment option that can help greatly. It may improve quality of life for many patients, but an improvement is not the equivalent of a cure.

The importance of proper expectations cannot be stressed enough. My surgeries were difficult and didn’t come without risks. I do not regret having my surgeries and I would recommend consideration of this option to other ulcerative colitis patients (depending on the circumstance), but I would also recommend doing your research and making sure you have a knowledgeable gastroenterologist/IBD specialist on your team.

Stay tuned to Shawntel’s blog to read more about her interview with Dr. Higgins.

shawn

Shawntel Bethea is a Patient Advocate and Blogger at ChronicallyStrong.com. Shawn was diagnosed with Ulcerative Colitis at 17-years-old and now works to raise awareness for IBD as well as Mental Health / Illness. She uses her story to comfort and empower patients to become partners in their own healthcare.

Different strokes for different folks: Art Therapy and IBD

Coloring books aren’t just for kids, they can be a helpful calming tool for those who battle chronic illness. The simple act of coloring intricate shapes and patterns allows us to enter a meditative mental space. IMG_1060Once you enter this state of calm amongst the stress surrounding your life, you can take in the positive messages of a coloring book.

I recently connected with an artist named Alia who created a coloring book specifically geared toward those who battle inflammatory bowel disease. It’s called “Crohn’s and Colitis: Color to Cope.” After watching her sister battle Crohn’s disease for more than 20 years, she was inspired to use her talents to make a difference.

Alia says, “Seeing how much my sister suffered, physically and emotionally with Crohn’s inspired me to create a coloring book. The psychological aspect of coming to terms with IBD is very underestimated, especially for young women. I wanted to create something to make her feel better. I noticed there was a limited number of informational books available. Adult coloring is a proven stress reliever and engages the limbic (emotional) brain. It helps you enter a ‘flow’ like state. I thought pairing inspiring/supportive quotes with images would help anyone suffering with IBD process what they are feeling.”IMG_1058

See the support in the palm of your hands

The coloring book is a visual representation of support that many of us in the IBD community yearn for. It validates and honors our experiences—no matter what age you are. Flipping through the pages, you’ll see quotes and images for times of stress, sadness and laughter. The coloring book provides an accessible way to release stress and get motivated to take on the day.

Since the coloring book launched, Alia has received amazing feedback from the IBD community. Here’s an example shared on Instagram:

“Thank you for creating this coloring book. I was diagnosed with Crohn’s at age 17 and am now 33. After four surgeries and two ostomies, as well as a lifetime of stories that no one would truly understand unless you were in my shoes, I think this book is very therapeutic and I appreciate your empathy and support.  Thinking of you & your sister.  Much love.”

The inspiration behind the art

IMG_9039As someone with a creative mind whose passion lies in art, Alia did research within the IBD community to see what types of images might resonate, along with key messages and emotions. Safe to say, the girl did her homework!

Alia went on to explain that coloring calms the amygdala, which is the part of the brain that controls the fight or flight response. This part of the brain is often on high alert during periods of stress or illness. When we’re fatigued, and our energy is low, coloring isn’t taxing, it can take us back to our childhood. A time of life that was most likely more carefree. Whether you’re at home or in a hospital bed, the coloring book can serve as a helpful tool in your day-to-day management of your illness.

How to get your hands on a copy

The coloring book is available on Amazon in the United States, the UK and Europe. Click here to purchase “Crohn’s and Colitis: Color to Cope.” The coloring book is published under Alia’s author name: “MeMoments Creative”.

Follow Alia on Instagram: @crohns.colitis.color2cope

Along with IBD, Alia has also created coloring books geared towards infertility. Her most recent book targets mental health—depression and anxiety. She plans to create more coloring books in the future that can serve as a support tool for other patient communities as well.

 

 

 

“Byrd’s” of a feather fly together: Advice from a fellow IBD advocate

Feelings of isolation, fear and embarrassment. Chances are, if you battle inflammatory bowel disease you’ve experienced all of these feelings upon your diagnosis. That was the case for Byrd Vihlen, a 31-year-old from Georgia, who was diagnosed with ulcerative colitis at the age of 26. IMG_8145Fast forward three years and her diagnosis changed to Crohn’s Colitis.

Byrd recently won the first-ever Lights, Camera, Crohn’s Instagram giveaway. The connections we make along our patient journey empower us to be stronger and face our illness head on. Check out this interview that sheds light onto Byrd’s brave battle against IBD.

NH: What symptoms did you have that led you to know something was wrong?

BV: “For about a year, I was having digestive problems (seeing occasional blood in my stool, chronic constipation, and bloating). I thought it might have been a milk/diet sensitivity, so I scheduled an appointment with a GI, and he immediately advised me to get a colonoscopy. I was really scared and didn’t have enough information, so I cancelled a few days before the scheduled procedure. It wasn’t until almost a year later (after a few weeks of antibiotics for sinus problems) that I realized something was horribly wrong. I started to bleed a lot, was in severe pain unlike anything I had experienced before, and had extreme urgency.”

NH: How has your disease changed your perspective on life?                                       

BV: “Before I got diagnosed, I would easily get caught up in the plans for what I thought my future would and should look like. Being chronically ill makes you slow down, loosen the control of your life that you thought you had in the first place, and focus more on what’s going on today–because most of the time, you’re fighting just to get through the day. It makes you aware of the little things that you may have been too busy to see before, like people trying to hide their suffering and struggles. byrdI’m thankful IBD has opened my eyes and given me the gift of true empathy. That empathy has led me to crave a deeper understanding and genuine connection with friends and loved ones. It has also shown me the true strength in others, and I am constantly humbled by the selflessness of my sweet husband and forever soulmate.”

NH: What advice do you have for those who are newly diagnosed with IBD?

BV: “Finding the right team of doctors, get referrals and read online reviews. When you do find a doctor you trust, you still need to be your own biggest advocate and use your voice. Don’t be scared of asking questions and calling them too much–only you know when something isn’t right with your body. Connect with more seasoned patients and ask for advice, there’s a lot of overwhelming information on the internet, so it’s nice to receive firsthand experience from people you know. IMG_5428Your new “normal” is going to look a little or a lot different; it will take some time to adjust to that. Try not to compare your new energy level to your old, your body is fighting a hard battle and you’re doing the best you can. If your energy/activity level is more limited, plan accordingly. Choose wisely who you want to spend your time with and what you want to do – soak in and cherish these times.”

NH: What inspired you to share your patient journey with IBD on social media?

BV: “After diagnosis I was feeling isolated, scared, and embarrassed–like I was alone in the pain. I wanted to tell others about this huge life-changing battle I was beginning to fight, but realized that most people are uncomfortable talking about chronic illness in person. I had a desire to be seen, understood, and wanted to connect with others going through a similar journey. I then discovered the incredible Instagram community waiting for me and loved that as an artist I could creatively tell my story in a visual way.”

NH: How does support from others in the IBD community on social media help you push through the difficult days?

BV: “Connecting to others who are fighting gives me strength in knowing that I’m not alone. People sharing their vulnerability is beautiful and it warms my heart. IMG_5326Whenever I am having a really difficult day and see a fellow warrior saying they can relate, offering words of kindness, or that they are having a hard day as well, you can feel that genuine connection and know that they truly mean it.”

You can connect with Byrd on Instagram and follow her patient journey by following her here: @byrdvihlen. Stay tuned to my Instagram page (@natalieannhayden) for future Light’s, Camera, Crohn’s giveaways!