Patient Education Day: Speaking from the heart

Inspirational. Resilient. Strong. Those are the first three words that come to mind when I think of the Crohn’s and Colitis community. This past weekend I had the opportunity to attend and speak at a Crohn’s and Colitis Foundation Patient Education day event in St. Louis. Sitting in a roomful of patients, doctors and caretakers—surrounded by a group of people who “get it”. A group of people who share the same struggles, triumphs and life experiences.

There’s something to be said for making connections with this close-knit community face to face, rather than over the internet or social media. We laugh together, we shed some tears together, we meet people who are complete strangers who in a matter of hours feel like close friends.

In the days leading up to the event I had drafted a speech—all about preparing for a family with Crohn’s, pregnancy and motherhood. It was a busy week, so I never had a chance to look it over. In the minutes before I took the stage I kept going back and forth in my mind about whether I wanted to bring up my speech and hold the papers in my hands or just speak off the cuff.

I brought the papers up and as soon as the microphone was handed to me, I looked out the in the crowd and saw several young kids and teenagers. In that split second, I decided my speech should be motivational for them. I talked about how Crohn’s and ulcerative colitis enable us to have incredible perspective about life. I shared details about my experience being diagnosed and how I didn’t allow my disease to rob me of my dream of being a news anchor. I talked about the importance of caretakers and having the superpowers to see which family members and friends step up to the plate when you need them the most, and which fade to the background.

Most importantly, I spoke from the heart. If you’ve battled inflammatory bowel disease for any amount of time you have a story. Your story has the power to lift up others and show them they are not alone. It’s so easy to isolate ourselves and pretend that we’re feeling fantastic, when in all actuality our insides are inflamed and constantly leaving us in pain. As I looked out in the crowd, wearing a dress, standing tall with my hair curled—looking like a completely healthy person. I said—little would you know looking at me, that this morning at 2 a.m. I was stuck in the bathroom in excruciating pain, on the brink of throwing up. Those are the moments nobody sees, that we need to talk about.

As I looked out in the crowd I saw so many people nodding, so many people crying. I talked about how my husband Bobby has been there with me every step of the way since we met in 2013. Explaining his daily efforts to make sure I am ‘ok’. I saw tears in his eyes as I shared our story. After the speech I was approached by patients, parents and doctors. I was told countless times how my genuine and heart-felt words meant so much. Each of the conversations I had made me feel overwhelmed with joy. It was such a special day and such a special experience for my family. On the way to the event, I talked with my husband about how I wish I didn’t suffer in silence for over nine years and wish I would have shared my story from the start.

I don’t want you to have the same regrets as me. I know it’s easy to hide behind your invisible illness and think people will judge you, pity you and look at your differently. But what I’ve come to find out is that it’s the complete opposite. You will feel so empowered by sharing your story and you will quickly find out how strong and incredible the IBD family truly is.

“Don’t look back”: A mother’s tips for dealing with a daunting diagnosis

Being in control. Knowing what tomorrow brings. Understanding why. Unfortunately, when it comes to inflammatory bowel disease, we don’t have those abilities or those answers. This week, a guest blog from a California mom of six girls named Cait. Her 13-year-old daughter, Natalie, was recently diagnosed with Crohn’s disease. I connected with Cait on Instagram and look up to her as a mom who’s trying to navigate her daughter and her family’s new normal.

As a mom, I always want to have the answer or know just the right thing to do to help my kids along their own path. caitSo, when all of that seemed to crash around us in May I felt lost. I felt alone. I didn’t know which way was up. This wasn’t in my plan nor did I wish for Natalie to journey it.

But here we were. Months and months of tests and researching late at night on my phone. Was it a tummy bug? Was it a parasite? Was it a food allergy surfacing? Mono? So many questions and not enough answers. The one test we all felt Natalie needed, our insurance denied us.

We could not keep watching our precious daughter fade. Something was terribly wrong. When we saw her doctor one last time in hopes of finally knowing a reason, it was still unclear and we all decided it was best to go to the Children’s hospital so this could finally be resolved. cait4

Long nights, early mornings, no sleep, tests after tests and the same questions asked over and over again. It was exhausting. I have never felt so helpless. I tried to stay strong, encouraging her, supporting her, talking to the doctors and being by her side while my husband and both sides of our families cared for our five other daughters. Our family came to visit as much as possible, but the drive was far. I sat alone with Natalie when she went for her first scope. I sat alone with the doctor and received the awful news. But I was somehow relieved in those early moments. We finally had a name for what we were dealing with. Crohn’s disease. We now had a team of people who wanted to help us manage and get her disease under control. Such relief to no longer feel alone.

There have been hard days, and really hard days and then days it seems nothing ever really happened. And although we are so new to all of this, there are some things I have been learning along the way. cait2

It’s ok to cry with them. They need to know they are not alone. I tried to stay strong, but being able to weep with her was soothing for both of us.

Keep the lines of communication open even when they are hurting and may say they don’t. Those thoughts and emotions have to be worked through. This is a tough diagnosis.

Find ways to laugh. In the hospital everything was so depressing for us. So when we got the results we made a Snapchat video to share it with everyone. Somehow it lightened the mood and helped us embrace our new reality. cait6

Soak up these moments of bonding even though we all know we would rather bond over coffee dates and shopping trips and not hospital stays and long trips to see her specialist.

Do research and don’t be afraid to go with your gut (no pun intended). You know your son/daughter better than anyone else. Respect the doctors, but don’t be afraid to ask questions and have a voice in their treatment. You are your child’s best advocate.

My biggest encouragement is this, stop looking back. As a mom I want to turn back time. I want to fix it somehow. I want to change it all. Looking back only brings unnecessary guilt, sadness and regret.

Look forward. Find things to be thankful for. Do your best to give them the brightest future and speak life over them. Cherish every moment. And help them plan their future–which can be as bright as any other child.

To follow Cait and her family’s journey, check out her blog.

 

Six tips for being a healthy IBD mom

My little guy Reid turned six months old on September 29th. Everyone always says how quickly time goes, but until it’s your reality…you don’t realize what a blur everything becomes. These past six months I’ve had the fear of a postpartum flare looming overhead. Wondering when my disease was going to re-surface with a vengeance. Luckily, despite having a few rough patches…I managed to stay out of the hospital and keep things under control on my own. reid6months

I’ll be the first to admit, mom guilt is real. It’s especially real when you’re grappling with a chronic condition like Crohn’s disease. Wishing you had more energy to keep up around the house, wondering how you’re going to play re-do the following days, weeks and years ahead. There are days and moments that push you and the struggle doesn’t get any easier when you have to care for more than just yourself. Sometimes it can feel like an uphill battle. Other days you feel like you can conquer the world. AH1_4345I wish I could bottle up those fleeting feelings of invincibility and use them when I need them most. Because just like when you’re diagnosed with Crohn’s… it’s a part of you for the rest of your life, and so is motherhood.

Here are six helpful tips for conquering motherhood with inflammatory bowel disease:

  1. Get as much rest as possible

You know the advice you hear all the time “sleep when the baby sleeps”… pretty sure I actually only followed that rule of thumb a few times. But really, try and get as much shut-eye as possible. Especially after that early 3-4 am feeding. If you wake up again at 6 am you’ll at least feel like you’re just getting up for work or something! Work with your significant other to rotate who is getting up in the middle of the night and try to at least lay down, even if you’re not tired. My husband is always great about letting me “sleep in” on the weekends since I am the main caretaker all week. We all know IBD is a fatiguing illness as it is. The last thing you need is to couple that with utter and complete exhaustion.

  1. Keep all your doctor appointments and wellness visits

Once you become a mom you quickly realize that your needs drop to the bottom of the totem pole. It’s imperative you don’t let your efforts to manage your illness go by the wayside. Even when you’re delirious, take your medications and go to your doctor appointments. I scheduled everything from my GI visits to bloodwork around times I could have a sitter. I didn’t want to bring my son around the germs of a hospital or a doctor’s office (other than the pediatrician) before he was six months old. You’ll also want to attend those appointments by yourself or with a loved one or a friend, so you can listen and focus.

  1. When you have to go, GO.

One of the hardest things for me has been feeling the need to use the bathroom while feeding my son. I never want to interrupt his feeding or take the bottle away. Generally, when I do that he’s not the happiest with me. But you know what, the baby will survive if you need to take a five minute TV time-out and make a mad dash to the bathroom. In these past six months, I’ve carried Reid in the Rock N’Play and fed him from the door of the bathroom hunched over on the toilet on multiple occasions. How’s that for a visual, folks? Mom goals, right?!

  1. Schedule a massage…or two

Ladies, I don’t know about you…but one of my biggest “complaints” during pregnancy and after my c-section was back pain. IMG_1146I’ve had two professional massages at the spa since Reid was born and they have done wonders to relieve the stress. Massage and meditation is also beneficial when it comes to keeping stress levels low. For me, stress is my main disease trigger. I know massages can break the bank, so ask for gift cards around the holidays, for Mother’s Day or your birthday. It’s the best treat.

  1. Be mindful of what you eat and drink

Oftentimes the days are flying by so fast and you’re so focused on caring for your little one that you look at the clock and realize you forgot to eat the last few meals. For me, I constantly forget lunch. Don’t skimp on nutrition or eat foods that you know will trigger a negative response in your body. Try and meal plan and go grocery shopping on a Sunday so you have food readily available in your kitchen. Make enough for leftovers so you’re covered for lunch.

  1. Don’t be afraid to ask for help

This is much easier said than done, and I know I struggle with speaking up. But we must. Being a mom is a full-time job in and of itself and then some. It’s the most amazing and the most difficult role you’ll ever get to experience. Know that you have a tribe of loved ones—family members and friends who are on the sidelines just waiting to sneak in and get some snuggle time with your little one. Take them up on it. You need time for you. You need a break to clear your head. Just ask—even if it’s only for an hour, speak up and you won’t be disappointed.

IMG_2624As far as postpartum flares I am thrilled that I’ve made it Reid’s entire life without needing to make an emergency trip to the hospital. (knock on wood!) I was also told by my pediatrician that Reid would no longer have the remnants of Humira in his system once he hit this milestone. We kept a bit of a low-profile these past six months since Humira is an immune suppressant. Reid couldn’t be healthier. Still hasn’t had a cold yet, so I chalk that up to success! It’s amazing how great it feels to just get outside and take a walk, soak in the fresh air and that time with your baby.

When you have a little human who depends on you for everything, it’s easy to put your own self-care and disease management to the wayside. But the funny thing is—we can’t be good mamas if we’re not healthy. IMG_1132So, take that time for yourself. Give yourself time to get into a groove and a routine that works best for you. Then one day, whether you’re holding your baby or just changing a diaper you’ll feel this empowering epiphany come over you and you’ll think… “I got this”… and guess what, you do.

Taking Charge: Making Your Healthcare Appointments Work for You

How many times have you been at a doctor’s appointment and felt feelings of doubt and anger while listening to your doctor explain a treatment plan or talk to you about what’s necessary to ease your pain and manage your symptoms? Sadly, there’s probably a good chance you’ve felt this way. I know I have, on several occasions. Anyone who knows me, knows I’m a bubbly and outgoing girl—I rarely stay quiet and I’m not shy about sharing my feelings. For some reason though, there are times in my patient journey with Crohn’s that I’ve left doctor appointments in tears or felt enraged by how I was treated. Silenced in the moment and then ranting in the car to my husband or mom about what I just experienced. It’s like I couldn’t find the words in the moment and then found them the minute I was out of the room with the doctor.

A fellow chronic illness patient, by the name of Ricky White, reached out to me recently. RWhite-22-cropHe battles a chronic, degenerative disease: Ankylosing Spondylitis (AS).  This autoimmune condition is a form of arthritis that primarily affects the spine. Ricky is a writer and a registered nurse—he has the unique viewpoint of the what it’s like to serve in the medical profession and what it’s like to be in the patient’s shoes. This perspective inspired him to write a book entitled, “Taking Charge: Making Your Healthcare Appointments Work for You.” Ricky reached out to see if I would be interested in reading his book and writing a review. I gladly accepted the offer and was instantly intrigued by the subject matter. What I didn’t realize is that I would read the book cover-to-cover, in a matter of hours. The same day Ricky reached out to me about his book, I started and finished it. It was that good…all 152 pages. And let me tell you folks, seeing that I have a baby who turns six months next week…that speaks volumes!

When you have a chronic illness like Crohn’s or AS, or any condition for that matter—you are used to always having constant check-ups, blood draws and appointments. When you finish up one appointment, you make the next one. Trying to find a doctor who fits your needs, understands your goals for treatment and doesn’t leave you feeling like less of a person can be easier said than done. There needs to be trust. You’re putting your health and your well-being into the hands of someone else. Oftentimes it’s not just one doctor, but a team of specialists—in all different areas of medicine.

In the book, Ricky writes, “You are not a generic patient. You are unique with your own needs, so treat yourself uniquely and not as a checklist of symptoms from the internet.” This really stood out to me. Don’t ever feel like you are just a number or just another medical case. You are a person, with extra needs. Your personal struggles and pain should not be minimized. You should feel empowered and stronger after a doctor’s appointment, not like you are trying to prove that you need pain medication or that your medication isn’t doing anything to silence your symptoms.

IMG_20170506_150438In the book, Ricky also talks about the importance of making long-term goals and not just focusing on the present. He writes, “We’ve talked about long-term goals. Make sure they aren’t neglected for the “now.” So, if need be, interrupt the flow of the appointment and change its focus to what you both do to help long-term. Even if your long-term goal is very long-term (for instance, years). It still should be mentioned briefly at each follow-up appointment to make sure you’re still on track and it is still a relevant and appropriate goal. Your health will change over time, it’s important that your goals change with them.” This is so important for so many reasons. When I was engaged and had my bowel resection surgery, I made it clear to my doctors that I wanted to start trying for a family right after my wedding. My drug and vitamin regimen was altered with that in mind, so was the timing of colonoscopy. Having clear communication and being open about what your hopes and dreams are for the future is critical. While doctors may be able to perform miracles with their hands in the operating rooms, master magician and psychic aren’t usually on their resume.

Ricky makes a great analogy in the book about how a first doctor appointment is like laying the foundation of the house and that follow-up appointments are when the house is being built. That house—just like your treatment protocol and management will oftentimes change. He goes on to say, “Do you use a washing machine to clean your clothes? Or do you scrub them in the river? Both methods work, but sometimes new things come along that are just better. The same is true for medical treatments. New treatments are constantly becoming available. Maybe there’s a better one for you. Don’t be scared of change. Be excited by it and embrace it.”

This book will make you feel like you are in the driver’s seat. While nothing is a cure-all, it will give you the tools needed to feel strong and have a voice the next time you’re sitting across from someone in a white coat. FullSizeRender.jpgThis book will give you the confidence so many of us lack when we’re in a doctor’s appointment. By being prepared—having questions written down—and looking at our doctors as allies and teammates rather than our enemies, we have the ability to be our own greatest advocates. None of us should feel the need to prove how sick we really are. We should be able to have honest, open and mature dialogue with a person who understands our diseases on a whole different level. I’m going to leave you with a powerful quote from the book—and something we all need to keep in mind:

Taking Charge cover RGBYour disease, regardless of how common its prevalence, is unique. Remember this often. Healthcare shouldn’t take a one-size-fits-all approach. Don’t assume that your problems are the same as someone else’s and can be “fixed” in the same manner. Neither is true. Your problems are yours and yours alone. That’s something to respect. Celebrate your individuality. One of you is all this world can handle, because you’re awesome. Remember that often, too.”

You can check out and purchase Ricky’s book by clicking here.

 

 

An interview with Texas Rangers pitcher, Jake Diekman, about what it means to “Gut It Out”

When you think of a role model, who comes to mind? By definition, a role model is ‘a person looked up to by others as an example to be imitated.’ One of the most well-known role models in the inflammatory bowel disease community is Texas Rangers pitcher, Jake Diekman. Jake has battled ulcerative colitis for more than 20 years. ButFullSizeRender (9), he didn’t let his daunting diagnosis derail his dreams of hitting the mound as a professional athlete.

Since January, Jake has endured three surgeries to remove and rebuild his colon. In the first surgery, Jake had his colon removed and was fitted with a temporary ostomy bag. Then, doctors looped a portion of his small intestine around itself to form an internal reservoir, called a J-Pouch. FullSizeRender (7)This essentially replaces the functionality of the colon. Jake had hopes of waiting for the surgeries until the offseason, but his disease had a different game plan in mind.

When this left-handed pitcher isn’t busy closing out games or battling his disease, he’s raising money and awareness for the cause. He has the term “Gut It Out” tattooed on the inside of his right wrist and created the “Gut It Out” Foundation. A non-for-profit organization that’s main mission is to support IBD patients. His t-shirt sales alone have raised more than $12,000 for the Crohn’s and Colitis Foundation. Jake makes a point of connecting with people of all ages who endure IBD. He goes above and beyond to meet with kids and teens across the United States and organizes fundraisers for the cause.

I had a chance to ask Jake some questions about his inspiring battle with ulcerative colitis. Here’s what he had to say:

NH: What’s is like to play professional baseball while battling a chronic illness?

JD: Some days are definitely harder than others, but you just push through. Surprisingly, my UC has never bothered me while I’m on the mound. Before and after yes, but for whatever reason, I was able to block it out while actually pitching in games. FullSizeRender (5)I do become more fatigued than my teammates and have to stay on top of my hydration on very hot days, but other than that, I try to not let it dictate my baseball career. 

NH: What advice do you have for kids who aspire to be like you, but face the unknown with their illness?

JD: Listen to your doctors. They know best and they are giving you instruction for a reason. When I was a kid, I used to think I knew better, but I always turned out to be wrong. Follow the plans they give you to the best of your ability, and be patient.Don’t let these diseases stop you from chasing any dream you have. I think I am a good testament to that. 

NH: What does the “Gut it Out” effort mean to you?FullSizeRender (10)

JD: Gut It Out means to just push through the tough times. Be as strong as you can and literally, gut it out with all your might. I wanted other people to be inspired by that mantra and to use it when they need it most, in any aspect of life. 

NH: How has your diagnosis and disease journey impacted the person you are?

JD: It has taught me how tough I am. It has taught me to be more patient in life (still working on that). It has made the little things not seem as stressful as they are, because there are bigger issues in life and bigger hurdles you might have to face. It’s taught me how to listen to my body and know my limits. 

NH: How has your fiancee, Amanda’s, support helped you overcome obstacles?FullSizeRender (6)

JD: Amanda has been my rock through all of this. Without her, I don’t know how I would have gotten through. She doesn’t let me mope, she pushes me to do the best I can and not let anything stop me. She’s been there for me through it all, and talked me off a lot of ledges. At the end of the day, knowing I have her by my side, makes everything better. 

NH: Are there any misconceptions about UC or Crohn’s that you want people to know about?

JD: That it doesn’t have to be embarrassing, and it’s not just all about going to the bathroom a lot. There doesn’t need to be a stigma behind having a bag, or having these diseases, because at the end of the day, we are all human. I want people to know how isolating and lonely it can be, how it can affect your social life and your relationships, and I want people to have a little compassion for those going through this. Be patient with your friend or family member, and let them know they aren’t alone. 

Jake made a triumphant return back to the mound against the Los Angeles Angels on September 1. FullSizeRender (11)He received a standing ovation from the crowd at Globe Life Park after retiring all three hitters and earning a big win. It’s amazing to think the same person who was hunched over in a hospital gown walking gingerly through the hallways months ago, is now sporting a Rangers uniform standing before thousands…pitching at the highest level.

Click here to learn more about the Gut It Out Foundation. A special thank you to Jake for taking the time to respond and share his incredible story. Words don’t do justice to explain how Jake’s efforts to spread awareness make a difference. From one IBD’er to another, thank you!

 

 

Crohn’s doesn’t get easier, but you get stronger

I recently came across the following quote, “It doesn’t get easier. You get stronger.” Those words made me pause and reflect on my personal patient journey and also think about how I give advice to those in the inflammatory bowel disease community. FullSizeRender (4)While I believe the diagnosis and the initial flare-up that hospitalizes you is probably the most earth-shattering to your world, maybe as time goes on we just become a bit desensitized to the worry and all the pain.

Each flare-up and rough patch has its own set of memories. Even after more than a decade of fighting an illness that’s become a big part of who you are…it’s still just as scary as they roll you down for the abdominal CT scan to see what’s brewing. It’s still just as worrisome when your significant other races to the hospital and you walk through those ER doors and know you won’t be going home.  Each of these moments builds up our strength, even if while they are happening we feel weak and out of control.

I’ve come to realize that all my hospitalizations are a bit of a blur. They are hazy in my memory. Maybe I’ve blocked them out. The clearest moments are those when I get to go to home.

image (66)

After being released from the hospital following a bowel obstruction, we went to the park.

That first walk at the park after being in a hospital for days on end. Getting to eat a full diet and saying ‘so long’ to the clear liquids. Staring out the window of the car while “Fight Song” played on the radio after my bowel resection. Looking in the mirror at my battle wounds and being proud of what I’ve endured to get to this place, rather than ashamed. Taking that final prednisone pill and surviving another wean-down process. THOSE are the times that make us all stronger. Because we come to a place where we’ve overcome our difficult present and gotten to those brighter days. You must not sell yourself short. You need to soak it up and give yourself credit—because no one around you truly knows what it’s like to be in your shoes. We can have similar experiences, medications, surgeries… but, each of us has a unique story to share.

Battling IBD is certainly not sunshine and unicorns, but it makes the feel good days much more beautiful.

photo by J Elizabeth Photography www.jelizabethphotos.com

I was completely pain and symptom-free on my wedding day, forever grateful.

We learn not to take anything for granted—whether it’s feeling good after a meal out with family and friends or getting to attend a wedding and not feel any pain while you’re on the dance floor. Those are the times we celebrate. It’s verbally getting to say to my husband, “I feel SO good today.” It’s finding joy in the times when your disease gives you a break and you can feel like everyone else. It’s having the energy to take my son on a long walk and breathe in the fresh air, pain free. It’s eating popcorn as I type this and not feeling any repercussions!

So while Crohn’s is a roller-coaster of emotions and experiences, there is one constant through it all. Not just for me, but for you, too. image1 (5)We are strong. We are resilient. The suffering and pain is fleeting, it will pass. Just as those amazing and happy days will. Live in the now—don’t stress about tomorrow and only look back to recognize how far you’ve come along the way. When I think of myself “BC” (before Crohn’s) it’s almost like a different person.

“How I told my boyfriend I had an ileostomy”: A guest post by Britten

You never know who you’re going to meet along your patient journey. Once you feel comfortable sharing your story, there are so many opportunities to meet those battling inflammatory bowel disease. My mom recently discovered that her college roommate also had a daughter who battles Crohn’s. Naturally, I reached out immediately upon finding out the news. Britten and I connected on Facebook and then began emailing back and forth. This week, Britten shares a guest blog about what it was like to tell her boyfriend Chris that she had an ostomy bag. I’ll let her take it away…

The day I decided to tell my boyfriend Chris that I had an ileostomy, I was a nervous wreck. Swarms of butterflies raged in my stomach as I drove to his house. Purposely, I drove slowly to stall the inevitable talk. 5C127CAA16C0457F9250FCA386E5B413In my head, I rehearsed what I should say. I wanted the conversation to go perfectly, but I was worried about how the words would come out, and how he would take the news. The last time I attempted to have this talk, I got dumped. My ex-boyfriend of seven years broke up with me two days before having ostomy surgery because he couldn’t handle “me being sick all the time,” and I was terrified the same thing would happen again. After all, my current boyfriend and I had only been dating for a few weeks when I decided it was time to let him in on my little secret. I knew it was only fair to tell him.

Deep down, I knew I had nothing to be embarrassed about or ashamed of, everything that had happened that lead to me having an ileostomy was completely out of my control. It was just something I had to live with. But I still felt nervous and self-conscious about sharing my secret. All I could do was take a deep breath, and face my fears. Walking to Chris’ house, I knew there were only two outcomes to this situation. Either he would accept me as I am, or he wouldn’t be able to handle it and we would break up. Either way, there was no turning back now. Gathering all of my courage, I knocked on his door.

We settled on the couch, sitting with his arm slung comfortably over my shoulders. I turned to face him, took one last deep breath, and suddenly burst into tears. Startled, he immediately pulled me into a hug and tried to calm me down. 790D919F78754A6781A696C521624207After a moment, I sat up, wiped my tears, and explained that I had something important to tell him, and that I was nervous to hear his reaction. Chris gave me another hug and reassured me that everything would be okay.

With a rush of words, I began telling him my story. It was like having an out of body experience. I could feel myself talking, but I felt like I was watching the scene happen from across the room. Once I started, I couldn’t stop. I started at the beginning, explaining that I was diagnosed with Crohn’s Disease in 2012, and between then and 2015 I had about 30 surgeries to drain an abscess that refused to heal. I explained that because the abscess wouldn’t close, we decided to try a temporary ileostomy to see if that would allow it to finally heal. I continued, explaining that essentially, I have a poop bag, who I named Sammy, attached to my stomach.  Trying to make light of the situation, I joked that thanks to Sammy, I’m the world’s most perfect girlfriend, I can’t poop or fart.

When I finished talking, I stopped and looked at him, expecting him to be grossed out or scared by what I had just told him. D063A9A7D2CA422E83B1F4F1B289BE89Instead, I was met with love, kindness, and acceptance. And a fair share of curiosity. Leaning in to wipe the tears from my face, he comforted me by saying how brave I was for sharing my story with him. He knew it took guts. He took my hands in his, and reassured me that having a bag didn’t matter to him, I was still me. D91AE81B75844E6C868EFDEF3B1704B7Looking me in the eyes, he told me that I’m beautiful and that having a bag doesn’t change who I am.

Then, Chris shyly asked if he could see my bag. With slight hesitation, I had never done this before, I introduced him to Sammy. After seeing his reaction, I was overcome with happiness and relief. It was then that I realized that I didn’t have to hide my bag; it makes me who I am. I didn’t have to be embarrassed because I’m a fighter, a Crohn’s warrior, and I’m proud of that. I’m proud that I never gave up. Chris helped me realize that my scars make me unique, and help tell my story. Now that I had shared my secret with him, I knew that it would give me the strength I needed to be open and honest about Sammy for now on.

Be sure to check out Britten’s new blog entitled, “Babe With a Bag” and continue to follow her inspirational journey.

 

 

190 patients a day hear they have a chronic illness

I recently came across a statistic from the Crohn’s and Colitis Foundation that struck a chord with me. That statistic being that each day, approximately 190 people hear the words “You have Crohn’s disease” or “You have ulcerative colitis.” Wow. FullSizeRender (3)Let that sink in for a moment. That means each year 69,350 people join our IBD family. Take a moment to think back to how you felt when you heard those words come out of the doctor’s mouth for the first time.

Those words are lifechanging. Those words shake you to your core. Those words forever change you. Once you are told this, there is no turning back. From that point forward it’s an uphill battle with unseen obstacles along the way. It’s heartbreaking to think of how many people wake up one day not having an answer, and how many then go to bed with a label that they will wear invisibly for the rest of their lives.

It seems for many who don’t battle inflammatory bowel disease or who don’t know much about it, that Crohn’s and ulcerative colitis aren’t that serious or that big of a deal. 190 daysThe majority of people I know never ask me how I’m feeling or inquire about how the battle is going. I have to bring it up 90 percent of the time. In some ways I welcome that, other times it’s a bit disconcerting.

Yes, my quality of life for the most part is similar to most people…but, I can tell you in the last week I had three rough days. Days where I couldn’t even stand up straight while I was home alone caring for my son. Days where I had to put my son down mid-feeding so I could make a run for the bathroom. Days where I turned to the bottle of Tylenol with Codeine on my nightstand and had to pop a pill so I could get some rest from the pain. By my outward appearance and what I share on social media you would never know this.

For those who have just been told they too have inflammatory bowel disease, my heart goes out to you. The journey you are about to embark on is like nothing you’ve ever experienced. The really terrible times when you’re in the hospital fighting a dreadful flare will end up being the moments that make you stronger than you knew possible. The days when you are feeling fantastic and your disease seems to be in hibernation will be absolutely glorious. IMG_1410Celebrate those moments and know the next time you’re facing surgery or unable to eat without pain that those incredible feel-good days will visit you again.

Have patience with yourself every step of the way. It’s ok to feel angry and wonder why me…but there will come a point where you will think…why not me? You were given this disease because you are strong enough to handle it. Use your hardships to inspire and help others. Use your experiences to show compassion and empathy. And most of all, don’t be afraid to ask for help or seek out others who understand what it’s like to hear those words, “You have Crohn’s disease.”

Pediatric Crohn’s: Seeing the world through Penny’s eyes

Meet Penny. Penny is your typical sassy, feisty and vibrant four-year-old. Behind that big smile and those glittering eyes filled with mischief is so much more. She’s a little girl, fighting a big disease. IMG_3407A disease that flipped her young life upside down. A disease that she will battle for the rest of her life. Penny was diagnosed with Crohn’s in January 2017.

Penny’s mom Beth came across my blog and reached out. Reading the desperation and fear in her words, but also the appreciation for my patient advocacy brought tears to my eyes. I felt an immediate connection with this family and specifically this little girl.

It all started this past November when Penny had blood in her stool. At first, her parents and doctors thought it was merely constipation. Something common, that many children go through. On Thanksgiving Day, that all changed. Penny was at the Detroit Lions football game with her parents, a family tradition. When Beth took Penny to the bathroom the entire toilet was filled with blood. As you can imagine, it was horrifying to see. IMG_3405After several tests, Penny was referred to the Pediatric Gastroenterology department at University of Michigan-Mott Children’s Hospital in hopes of finding answers.

On January 11, 2017 Penny went in for an upper and lower scope. As soon as it was over, Beth and her husband were called in to meet with the medical team and were told that Penny had Crohn’s Disease. Let’s pause for a second. Imagine being told your four-year-old daughter, who was perfectly healthy up to this point, had a chronic disease, with no cure.

Beth says, “When we were initially given the diagnosis, I was numb.  And this wave of “mama bear” protection came over me. I went through the motions of gathering as much information as I could so that I could do everything I could to help her. After the initial shock passed, my heart broke and I also became angry.  I hate that she has to go through this and especially at such a young age. I cry…a lot. I am trying very hard to let go of the anger but it is really hard not to be angry at the world when your baby is handed such a huge, life-altering diagnosis.”

Since being diagnosed in January, Penny has spent more than four weeks in the hospital. IMG_3399She’s underwent MRIs, ultrasounds, countless blood draws, two Remicade infusions which were believed to induce heart failure, time in the cardiac ICU, two different PIC lines, a blood clot, an NG tube, physical and occupational therapy… you name it, Penny has endured it.

“This diagnosis has changed all of our lives.  Our lives have been consumed by it.  It makes my heart ache to think that there is no cure and that she will forever live with this.  She is four.  She has a lot of life left to live and a long time to live with Crohn’s.  The only positive thing is that she will not remember life without it and will know how to live life with it. She will learn early on how to take care of herself and also how to be her own best advocate.”

When Penny gets her infusions she’s happy as a clam once the IV and blood draw are behind her (can’t blame her!). penny2She spends the rest of the time playing, watching movies and eating snacks. Penny has taken all the challenges in stride and hasn’t allowed the difficult days to take away from her happiness and magnetic charm.

Beth says her daughter inspires her every single day, “She inspires me to be more courageous. She inspires me to do hard things!  I find myself often saying, “If Penny can do it, I can do it.”  She inspires me to find happiness in my day.  Throughout the entire hospital stay, even on her hardest days, Penny would find something to laugh or smile about.”

Beth and Penny are an inspiration to the inflammatory bowel disease (IBD) community. In just 10 months they have sponsored “Kid Care Bags” for kids in the infusion center, sold “Penny Power” t-shirts and donated the money to the Crohn’s and Colitis Foundation and participated in the Take Steps Walk in Detroit. IMG_3406Beth and her husband teach at a local high school and this fall the volleyball team is doing a Crohn’s Awareness game. This family is doing everything they can to help and advocate for others. Penny is learning and witnessing at a young age that just because you have a chronic illness, doesn’t mean you can’t lead a full and beautiful life.

When it comes to advice for parents with children who are battling IBD, Beth says you must learn everything you can and be your child’s number one advocate. Connect with parents and adults living with IBD, as they will be your greatest resources and provide hope and perspective. Most importantly, help your child learn about IBD and what is going on in their body. Why the doctors are checking them, why they are in the hospital, why they are in pain and why they need daily medication.

Penny is currently doing Vedolizumab (Entyvio) infusions. On a daily basis she takes Imuran and Vitamin D. She recently stopped taking Iron, Uceris and two antibiotics to help her fight infections she picked up earlier this summer. She also takes three medications for her heart: Coreg, Aldactone and Enalapril.

Like the rest of us, Beth hopes and prays for a cure someday, “My prayer every day is that my girl will see a cure in her lifetime.  IMG_3403But until they find that, my hope is that every patient finds the best way to manage his/her symptoms and learns to become an advocate for themselves.  I hope kids are able to manage their symptoms so they can just be kids who take medication and that IBD doesn’t consume their days.”

As a soon to be 34-year-old, who’s battled Crohn’s since I was 21, I have a few words for Penny and her amazing family and support system. While the journey won’t always be easy and your patience and strength will be tested time and time again, you will always rise above. Each flare up and tough moment is a setback, but this disease does not define who you are. You are not “Penny with Crohn’s disease.” You are so much more. You are a girl with a promising future, who can achieve and accomplish anything you put your mind to. In these past 10 months since diagnosis you’ve already grown and learned more than you realize. By the time you grow up you will be so strong and have a perspective that your peers will admire. So, keep being you. Don’t let this hold you back. And know that even though you may be small in stature, you have the ability to make a big difference in the lives of others. I know I already look up to you.

Click here for information on IBD. Research the best Pediatric Gastroenterology hospitals. And know that you are not alone in your worries, concerns and struggles.

 

 

 

My Son, Me and IBD: A Mother’s story from across the pond

I recently connected with a woman named Amanda Bate on Twitter. She’s a freelance copywriter, social media marketer, a Crohn’s warrior and a mom from the United Kingdom. Amanda was blindsided by the diagnosis of Crohn’s disease after giving birth to her son, Matthew. She sheds light on what it’s like to raise a child, while battling an invisible, chronic illness. This week, it’s all about Amanda’s story. I know it will inspire you, just like it’s inspired me:

School’s out for summer and we’re busy planning days out, trips to the cinema, walks in the park – you know the usual mum and son stuff.  Fourteen years ago I never imagined life returning to some kind of normal – so this is a big deal to me.

Parenthood is full of the unknown, mostly exciting, sometimes scary.  But the one thing every mum and dad have in common is the change in lifestyle.  We adapt to having a new person in our lives.  We learn new skills, learn we can love more, learn how to teach.  Life is never going to be the same.  It’s going to be wonderful.

Along Came Crohn’s

When Crohn’s came into my life it threw my plans for motherhood left, right and center – just like bowling a strike, only there were no whoops of joy.  During my pregnancy I grew ill, experiencing inexplicable pain. Steroids stabilized me until Matthew was born, then invasive tests confirmed that I was suffering from this chronic disease. I had to adapt to life with a new baby and an illness I knew nothing about.

My body struggled with the pregnancy and Matthew was born six weeks early September 25, 2003.  He spent his first weeks in an incubator in the neonatal department. My symptoms got worse and I was admitted to another ward. I was in the same hospital as Matthew, but to me it seemed I was 100 miles away. Someone else was watching over him – that wasn’t part of my plan.

Talk About Emotional

Crohn’s is stubborn and awkward when it comes to drugs – some work for a while, others don’t work at all. Getting the medication right took time. Oral drugs weren’t doing the trick, so I reluctantly turned into a pin cushion. summer 2006 051My body was being treated, but what about the negative thoughts in my head? It became apparent that I needed counseling, I was spiraling into a dark place… all triggered by guilt.  I wasn’t the mum I wanted to be, I believed I wasn’t going to be good enough.

My amazing counselor lifted me from that dark place and made me understand what really matters. So what if I didn’t have the strength to go to the park, to push the swing, to race to the top of the slide – all a child needs is fun, laughter, joy and love.

Growing 

As Matthew grew so did my understanding of Crohn’s. Matthew has been with me every step of the way. He is my reason to keep going, to fight, to get stronger. He came to every appointment with me, every blood test, visited me when I had to stay in hospital, and kissed my scars after surgery.

My doctor involved Matthew and gave him the same job to do at every appointment; he loved our visits – glad one of us did!  When I started to self-inject medication at home he would help prep the area and watch with fascination. To him, this was normal. I was normal.

On my bad days we’d invite teddies to a picnic on the lounge floor, snuggle and read together. We were incredibly happy.

Stronger

I never hid Crohn’s from Matthew, there was no point. It was important to me that he knew why we were a little different, why some days he had to be gentle with me and let me rest.  I explained as soon as I knew he could understand that my immune system is faulty and thinks my guts don’t belong to me – we make fun of it – silly immune system!

The more we learn about this disease, the less scary it becomes.

 

Together

So here I am 14 years later with a full-time job, hobbies, and lots of time for my family. Matthew, now a tall teenager, has watched me grow stronger. And there was me worrying I wasn’t going to be good enough – I’m a mum he’s proud of!

Matthew has run the Junior Tough Mudder and I’ve ran the Manchester 10k in scorching heat, both to raise money for Crohn’s and Colitis UK.  At the start of our journey we were both finding our feet … just look at us now!

Crohn’s Is Our Teacher

Together Crohn’s has taught us not to judge, to care, to listen, to understand, to be patient. But most of all to enjoy life!