Finding “Hope” and grace through motherhood and IBD

May 28, 2018Leave a comment

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. 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 complications, 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. It 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. We 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 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).

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

May 17, 2018Leave a comment

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. We 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 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

From 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!

The art of storytelling as a patient advocate

April 9, 20184 Comments

The art of storytelling. How do you narrate your patient journey? How do you build a relationship with others online for the long haul? Are you mindful of how your words benefit your community—and the value they possess?

I recently had the opportunity to attend Health Union’s HU Connexion ’18. It was an awesome event that brought together writers and patient advocates from a variety of chronic illness communities. I was there as one of the inflammatory bowel disease representatives.

There’s something special about getting to meet your online support network in person. One of the speakers at the conference, Laura Hope-Gill, discussed the power of narrative healthcare. Her words and her message were invigorating and empowering. She reminded us that there is no instruction manual or cookie cutter approach to patient advocacy. She discussed how each of our personal stories help to bring our advocacy efforts to life.

Laura said, “We are characters in a wonderful, heartbreaking story. Once you get the diagnosis—Ursula, our inner sea witch, waits to steal our inner voices. Instead of staying silent, remember that humans connect best at points of vulnerability. Illness gives our lives more meaning, we’ve discovered who really loves us and who our genuine relationships are.”

As a patient advocate and a voice for the IBD community, I’ve witnessed firsthand how my efforts and those of my counterparts require bravery. It’s intimidating and scary at times to put something out on the internet and await feedback. Some positive, some negative. It can be disheartening when your words seem to be falling on deaf ears. At the same time, when someone reaches out and lets you know how you’ve helped them or brought them comfort, it’s worth it. It’s that moment—when you feel heard, that you know you matter.

There is room for everyone at the advocacy table. It’s not a competition, it’s not a popularity contest on social media. Sure, “likes”, “shares” and followers may make us feel good—but, they are not a measure of the difference we are making. It’s not a competition of misery.

One of the most helpful recommendations I took away from Laura’s speech was the importance of not abandoning the storyteller. This was really eye-opening to me. You may wonder what I’m referring to. As a patient advocate and within any conversation you have—how quickly are you to relate to someone’s story and respond with your own similar experience? I think we’re all guilty of this. We aren’t malicious in our actions and maybe we’re trying to self-disclose to show we empathize. But, instead of responding with our own personal story—it’s imperative we listen, rather than tell. Let the storyteller guide the conversation.

By bringing a story of trauma to the surface, we are healing. Writing builds self-worth, beyond being sick. Diagnosis of any form, was the end of our normal. We grieved it. And guess what, we’re still here. Understand there is no limitation to our stories. Rather than being broken, you have the ability to be a storyteller and create a self beyond being sick. A special thank you to Laura Hope-Gill for reminding me of this and for opening up my eyes to the importance of being a storyteller in the advocacy space.

Reflecting on motherhood & Crohn’s: Year One

April 2, 2018April 2, 20185 Comments

One year ago—my life changed in the best possible way. I became a mom. But, not any mom. A mom with chronic illness. Parenthood is daunting, no matter what, especially your first time around. Throw in an unpredictable, often debilitating condition and tackling the role is even more challenging.

In talking with fellow women who battle inflammatory bowel disease, there always seems to be a hesitation, a concern and self-doubt about the prospect of carrying a baby. I totally get that mentality. It’s almost inconceivable to imagine your body—the same body that brings you so much anguish—creating a miracle.

Becoming a mom one year ago restored my self love. Becoming a mom has enabled me to see all that I’m capable of, even when I’m weighed down by fatigue. Becoming a mom has made every poke and prod, injection and procedure less of a pain, because now I have so much more to fight for.

When I stare at that focal point on the wall as a needle breaks my skin or when getting out of bed for the day is a struggle, I immediately think of my darling Reid. The boy who changed my life, who shook my world and who shows me every single day that my illness didn’t rob me of experiencing the most perfect gift.

Mom guilt is real. If you’re a mom with a chronic illness, instead of focusing on your limitations—or when the next flare-up could happen—soak in the moments of joy you feel and the happiness your innocent sweet child displays on a daily basis. Know that focusing on your needs and practicing self-care is paramount because by feeding your soul and lowering your stress, you are protecting your health for the sake of being there for your family.

As patients, we evolve. As people we grow. Each chapter of our lives matters and is part of our story. Embrace the good and even the bad—because it brought you to where you are today. Pain and flares are fleeting and as we all know, so is youth. Our babies grow up so fast, we must hold the feel good moments close and not dwell on past hurt or what could happen tomorrow.

Someday, when my sweet boy is older, he will understand that mommy isn’t like the rest. But, my hope is he’ll realize what an integral role and life-changing impact he’s had on me since the moment I held him in my arms for the first time.

As we sang “Happy Birthday” and my son played with his smash cake, I thanked God for keeping me out of the ER and hospital for Reid’s entire first year of life. I thanked God for showing me that my patient journey is about a lot more than me, it’s about my whole family. And there’s no one I’d rather stay strong or fight for, than them.

The difference between sympathy and empathy with chronic illness

March 12, 2018March 12, 2018Leave a comment

Sympathy and empathy. Two different words with very different meanings. Especially to those of us in the chronic illness community. The first nine years I battled Crohn’s disease, I kept my diagnosis as private as possible. Only close friends, family and co-workers knew what I was going through behind closed doors. I did this because I didn’t want sympathy.

Back on the news desk following a bowel obstruction hospitalization, would you ever guess this was my first show back?

I didn’t want people to look at me differently. I didn’t want to be judged or looked down upon. I didn’t want to be viewed as “less than” by my peers. When you choose to suffer in silence you close yourself off to support, you close yourself off to empathy.

Since sharing my patient journey in November 2014 with the public, I’ve realized the power of empathy. How it feels when those close to you and complete strangers reach out to offer support, words of advice and choose to show compassion. By definition, empathy means, “the ability to understand and share the feelings of another.” The definition of sympathy is “feelings of pity and sorrow for someone’s misfortune.”

When we choose to share our story, we open ourselves up to not only support, but criticism. People who believe we are advocates as a way of seeking attention. People who try and dumb down our personal experiences because they feel we share to get pity. People who believe we want others to feel sorry for us. This could not be further from the truth.

I share my experiences with Crohn’s disease as a way to inspire and educate.

I’ll always remember how my cousins and brother rallied around me at the Take Steps Walk in Chicago.

The last thing I want is for someone else to feel sorry for me. There is no reason to act like I have it worse than you or that you feel bad I’m not “healthy.” I am healthy, I just have a chronic disease that makes my life a little more challenging than yours. The challenges Crohn’s has brought into my life have been difficult, emotional and trying—but with each setback, comes a much stronger comeback. I am stronger and better for the trials I have been faced with.

I don’t want your sympathy. I want your empathy. I want you to reach out and see how I’m doing, because you genuinely care. I want you to show interest when I bring up my disease, rather than change the subject…or walk away. The lack of empathy and disinterest hurts more than anything. It shows you who’s a surface friend…and who is a real one.

I was hospitalized six months into my relationship with my husband. His support was amazing from the start.

Think about how you’d like to be treated and talked to, if you dealt with an invisible, chronic illness that wreaked havoc on your body without warning. A disease that you do all you can to control with lifestyle and medication. A disease of constant unknowns.

When you conversate with those in the chronic illness community—think before you speak and please choose to be empathetic, rather than sympathetic. Your efforts may seem minimal to you, but they mean more than you know.

Colonoscopy Prep 101 : Drink it all in

January 22, 20188 Comments

I scheduled my colonoscopy in September and it’s hung over my head ever since. It’s not the procedure that’s bothersome to me, it’s the prep and the worry of the findings. This past week, it happened. I went 2.5 days on a liquid diet (which is easier said than done when you’re a stay at home mom all day) and did the prep. Everyone knows the prep is far from desirable and it doesn’t help when you’re famished. For some reason, this go around was especially difficult on me. I was incredibly nauseated and weak. I vomited multiple times. I could barely get it down.

Luckily, an hour before I started the prep, my mom landed in St. Louis and was able to take care of my baby for me. I honestly don’t know what I would have done without her, as my husband was at work when I needed to start the prep. MOM TIP: Have someone help you, whether it’s a friend or a family member when you have kids. It’s nearly impossible to take care of yourself during this, let alone another person!

The magnesium citrate and I don’t mix well. Even with it cold. With ice. With Sprite. With Zofran to help the nausea. Still awful. Instead of drinking the 64 oz. of Gatorade mixed with 14 servings of Miralax in one hour, it took me seven hours…and I still had about 8 oz. left behind. The morning of the procedure I was supposed to get up three hours before we left for the hospital (3:30 am) and take 10 oz. of magnesium citrate. I woke up with stomach pain at 3, attempted with the prep again…and failed. I gagged the minute it touched my lips. Let’s just say I was not too confident in my how “cleaned” out I was going to be. In the nights leading up, I started to fear inflammation or issues that would change my disease course and plans for future children.

I turned to Instagram for some tricks of the trade when it comes to prepping for joyous colonoscopies and came away with some helpful tips I thought I’d share:

If you deal with nausea, ask your GI for a prescription of Zofran going in.
If magnesium citrate doesn’t sit well with you, see about taking over the counter Senokot tablets (typically four tabs in the evening and four tabs in the morning).
Keep the prep very cold, use ice and a straw.
Swish around apple or white cranberry juice and spit it out in the sink if you’re getting sick of the taste.
Have some diaper cream, A&D ointment and baby wipes on hand to ease the burden on you bum.
Use shot glasses.
Lemon popsicles (anything but red or orange is allowed), same goes for Jello.
Bone broth or chicken broth.
Plan that first meal as something to look forward to. Eyes on the prize, FOOD!
Gummy bears—just steer clear of the red and orange ones.
Have a good book, a fully charged phone and some magazines on hand.
Clean the bathroom beforehand, you’re going to be spending a lot of time in there.

As I sat alone in my hospital gown, waiting for the IV and the procedure I had a few moments to think, pray and reflect about my patient journey. My husband Bobby came back to see me, held my hand, kissed me a few times and I was whisked away. I woke up to the best news! There were no signs of inflammation or active disease and my streak of “remission” continues. I put that word in quotes because I am always hesitant, as my symptoms always come out of left field and blindside me. For now, I am going to bask in this celebratory moment, enjoy every feel good day and take in the relief of knowing I’ve gone through another colonoscopy and passed with flying colors!

5 Tips for dealing with grief while battling IBD

January 8, 2018January 8, 20182 Comments

Grief and inflammatory bowel disease. They don’t mix well. I can still remember getting a phone call in September 2012 that my grandma had been hospitalized, that night…I was in the ER, doubled over in pain.

When those close to me are in harms way, I have a difficult time compartmentalizing my stress and worry and not allowing it to impact my Crohn’s disease.

On December 22, a day before I was supposed to see my Grandma and days before Christmas…she passed away. I wasn’t able to say goodbye in person, but my mom put me on speaker phone and I was able to tell her how much I loved her and that it was “ok” to go to heaven. I told her to be my son’s guardian angel and to always give us signs that she’s with us. Through lots of tears, I told her what an incredible grandmother she was and what she meant to me. Minutes later, after my call, she died.

It pains me to write and to say those dreadful words. I have never been able to handle the thought of life without her. It’s overwhelming not to have my grandma here to talk with all the time, visit, share the holidays with and I’m heartbroken that she’ll never get to see Reid grow up. I’m also scared about dealing with this major loss and having it throw me into a tailspin. The last thing she would ever want, is for me to be sick. Each hospitalization, each flare, each setback, always hurt her heart. She hated to hear of any complications or issues. So, I know I need to be strong and reign this in…in her honor.

What can we do in times of extreme grief when we live with a disease that tends to ignite in a flare when stress or emotions are out of whack? What can do we do find calmness when all we want to do is scream to the heavens in anguish? What can we do when we know we have to go on and be healthy for our families, but struggle to manage our IBD—even with a combination of strong medications?

I’m writing this for both you—and for me (to be quite honest). I don’t have all the answers, but since being diagnosed in July 2005, I’ve experienced my fair share of heartbreak and stress. Here are five tips to take to heart when you’re going through something overwhelming.

Be proactive. Sure, many of life’s hardships come without notice…but, that’s not always the case. My grandmother was diagnosed with lung cancer in September and was told she had a few months to live. I knew this was the inevitable, but that doesn’t make it any easier. Each visit and each moment we shared together these last few months, helped me come to terms with what was to come. I’ve had good days and bad…emotions are funny like that. Something will hit you—and you’ll cry from a memory and then other times you’ll laugh at something you recall. Hold on tight to the good times and the good memories.
Deep breathing, meditation, warm showers. Exercise. You need to shut it off every day. Whether it’s for a minute or an hour. Take time to clear your mind—think of nothing…just focus on your breathing. This will do wonders for you. When I feel my symptoms start to kick in, I constantly remind myself to take deep breaths in and out, it helps so much. Go for a walk, go for a run, shoot hoops—do whatever it takes to release that negative energy and pain.
Communicate with your support network. One of the worst things we can do is bottle up our emotions and deal with the pain internally. If you need to cry, cry. If you need a shoulder to cry on, hug those close to you. If you need to snuggle your dog or your baby longer, do it. You are not in this alone. We’ve all lost someone close to us. We all know how painful it is to experience the death of a loved one. Share your memories, make your loved one’s memory eternal.
Think about what your loved one would want. Chances are, this person knew firsthand what a struggle life with IBD is. The last thing they would want is for you to be in pain, in the hospital or needing medical intervention. Be strong for them. Think about what they would tell you if you could hear their words as they watch over you. Find comfort knowing that they are with you, just in a different way. Look for the signs they may give you. My college friends recently came to town. One of the signs my friend gets from her mom are white feathers. She had just told us earlier that day. That night, at dinner, we sat down…what was over our shoulder, right next to our table…a Christmas tree made out of white feathers. We knew she was with us. Hold those signs close to your heart.
If you sense a flare is brewing, don’t put it on the backburner. Earlier in my patient journey I would wait until the last possible moment to go to the hospital. This is not smart. Nip that shit in the bud. You know your body, don’t try and be a super hero. The longer you wait to seek help, the worse it’s going to get. Recognize when handling your symptoms by laying on a couch, eating a liquid diet and taking pain pills isn’t going to cut it. You don’t need to be a martyr.

Handling grief is never easy, coupled with IBD it can be unbearable at times. Take time for you. Do what you need to do to heal and find comfort in your loved ones’ memories.

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Tag: inflammatory bowel disease