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. He 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.

In 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. This 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:

“Your 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.

 

 

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. But, 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. 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. 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?

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?

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. 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!

 

 

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. 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.

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.

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. 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.

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. In 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. After 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. Instead, 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. Looking 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.