First EVER Lights, Camera, Crohn’s Instagram giveaway

April 19, 2018April 19, 2018Leave a comment

Hey guys! Big news to share. I just launched the first Lights, Camera, Crohn’s giveaway on Instagram. As someone who’s battled Crohn’s disease for nearly 13 years, I’m well-aware of how far a simple act of kindness can go, whether it’s from a friend or a stranger. That’s why—I’ve teamed up with other positive forces for this special giveaway. Here are the prizes:

–A cozy, lightweight hoodie from @thegreatbm that reads “IBD Can’t Stop Me” on the front and “Ask me about my resilience and determination—where I find my strength—what motivates me to keep going and reminds me I can handle this pain—why I refuse to quit and what I’m doing to overcome my IBD” on the back. I own this hoodie, it’s comfy and so empowering.

-Pretty earrings that go with any outfit from @rockswithsass. The store owner battles Crohn’s disease herself and donates a portion of all proceeds to the Crohn’s and Colitis Foundation!

-Stoke quotes from a childhood friend who’s dedicated her life to motivating others through messages of positivity. @marliwilliams has donated 100 uniquely designed quotes geared towards helping you find and live your purpose everyday.

Here’s how you enter the contest on Instagram:

Like the post on my Instagram (natalieannhayden).
Make sure you’re following me @natalieannhayden, as well as the following pages:

@thegreatbm

@rockswithsass

@marliwilliams

Tag your besties or some fellow IBD’ers in separate comments. Each person you tag counts as an additional entry. Good luck!

The giveaway ends Saturday, April 21^st at 11:59 PM MST. Winner will be announced on Instagram Sunday, April 22.

This is my way of saying “thank you” for all your love and support through the years. Simple acts of kindness (especially on days when we aren’t feeling our best)…can make all the difference. If you’re interested in donating to a future Instagram giveaway, shoot me an email: natalieannhayden@gmail.com. I’d love to collaborate with you to make someone’s day!

Airport reflections: When you spot IBD support from a mile away

April 16, 2018April 16, 2018Leave a comment

I’m sitting at O’hare International Airport in Chicago. Fresh off taking the stage in Des Moines for a patient symposium. And an image of a young couple in the crowd keeps popping into my head. As I spoke, I noticed. I noticed how he squeezed her hand when I talked about love and inflammatory bowel disease. I recognized how he touched her shoulders when I reminisced about how it feels when friends turn their back on you, as you grapple with a chronic illness. As I stood on that stage, witnessing their not-so-subtle interactions, I knew that girl had found someone special.

Each time I speak, and in many of my articles, I refer to my husband, Bobby. Since the moment we met in 2013, and through all the ups and downs my Crohn’s disease has caused in our lives, he’s been my safe place and my protector. During my speech, I talked about how everybody needs “a Bobby.” A person who sees you for more than your disease. A person who doesn’t shudder at the thought of seeing you at your lowest for days on end in a hospital bed. A person who gets the day to day management and emotional toll chronic illness takes on not only the patient, but the couple and the family.

After my speech, this same couple who stood out to me in the crowd approached me. I immediately told them they had grabbed my attention. I said let me guess—I pointed to the young girl and said, “you have IBD.” Then I turned to her boyfriend and said, “and you are her rock and her caretaker.” They laughed and told me I guessed right. Isn’t it amazing how easy it is to spot this type of support? I was a complete stranger, once in her shoes. Young. Dating. Wondering about my future. Their names are Emily and Kellen.

Ironically, Emily and I both underwent bowel resection surgery days apart in the summer of 2015. Her boyfriend at the time, decided it was too much—and left her. Then she met Kellen. As we joked, “her Bobby.” IBD throws us curve balls, it challenges us in unimaginable ways, but it teaches us, too. One may think of surgery and setbacks as the lowest of the low during the patient journey, but often those moments bring about the greatest highs and crystal-clear clarity. Both about ourselves—what we’re capable of…and about others.

As I was talking to Emily and Kellen it brought tears to my eyes, because I felt so happy for her. Only 22 years old, so much of her life ahead of her. And she’s found the person who looks at her, despite her illness, and loves her for it. The Bobbys and the Kellens of the world are the real deal. If you haven’t found yours yet, trust me…they exist and they are out there.

It was my husband Bobby’s birthday yesterday. The special milestone days always bring out the mushy side in me. I can’t help it. So, as I sit in this airport, and think about how lucky Emily is, I’m also reflecting on how lucky I am to have found my ride or die, who will be with me all the days of my life, just like my illness.

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.

5 tips for finding flexibility within yourself while battling chronic illness

March 26, 2018Leave a comment

I’m a planner. Always have been. Always will be. But, as my grandmother always used to tell me, “Tell God you have a plan, and he’ll laugh at you.” That seems to be the case all too often for those of us in the chronic illness community. If you’re like me, each flare up and hospitalization has occurred completely out of the blue. I’ve been blindsided each and every time. I’ve worked a full day, trained for a half marathon, taken a road trip…you name it…and BAM…hello, bowel obstruction or abscess.

So, how can we go about our lives as normally as possible with the ever-looming dread of the next setback and flare? It’s easier said than done, but it is possible. I’ve battled Crohn’s disease for nearly 13 years, this perspective and knowledge took time for me to gain. When I was first diagnosed, flexibility and patience weren’t in my vocabulary. But, like all things in life, time helps us heal and time teaches.

Here are five helpful tips for finding flexibility while taking on your illness:

Do your best to live in the now. Rather than focusing on the past hiccups in your journey, live in the moment. Feeling well? Capitalize on this. Go outside, meet up with friends or family, get some exercise. It’s these fleeting moments of invincibility that provide us with a chance to live like the rest of society. It may seem simple, but recognize these moments, verbalize them with loved ones. Celebrate the small joys, that are a big deal.
Stop beating yourself up over what could happen. Many people in the chronic illness community talk about how common post-traumatic stress disorder (PTSD) is. We’ve all faced some challenging, debilitating moments that have shook us to our core. Of course we don’t want that to happen again. Don’t place blame on yourself. Instead, give yourself credit for all you do on a daily basis to manage your disease—whether it’s watching your diet, taking medication or making an effort to practice self-care.
Put your health first, don’t push yourself to the brink. Nobody likes to cancel plans or be a no-show at big events and social gatherings, especially when you’re actually looking forward to them. But, by putting other people’s needs before your own and worrying about what people might say or think of you—you’re only putting yourself in harm’s way. Be mindful of how friends and family members react when your disease is symptomatic. Are they supportive and understanding, or do they make you feel bad for bowing out? When you’re too tired, in pain or struggling, that’s a message from your body telling you to slow down. Please listen.
Roll with the punches of treatment. Trying to wrangle a chronic illness into control is exhausting. It’s constantly a chess game. When you no longer respond well to your biologic, when you’re put on a new medication, when you’re told to try eliminating sugar, dairy, gluten or all the above…try to give everything a shot and a chance. Think about the risk vs. the reward. It’s emotionally draining when nothing seems to be working or helping to ease your pain, but, staying positive and open helps us all physically, emotionally and mentally. Keep an open mind with your healthcare providers and have two-way communication. Educate yourself, learn about the clinical trials and treatment options out there—be your own best advocate. Connect with others who are living your same reality. Trust in other peoples’ journeys, but recognize your journey is unique and so is everyone else. Each person’s IBD presents differently.
Be the first to admit when you need help. By telling someone you are struggling, hurting or worried, you are not showing weakness. You are not complaining. If you are going through a dark time and wonder how you’re ever going to overcome a current setback, lean on your support system without hesitation. Internalizing your pain will only make matters worse. You’re still brave and resilient, no matter what.

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.

Liquid diets: How to thrive and what to avoid

March 5, 20181 Comment

When you battle inflammatory bowel disease, chances are there will be several times throughout your journey where you are limited to only drinking liquids—whether it’s preparing for an upcoming procedure or needing to rest your bowel during a flare-up. It can be extremely dreadful to function in a workplace or in a social situation, when you’re limited to drinking liquids or sipping on some broth.

When I was a news anchor in Springfield, Illinois, I used to interview and participate in cooking segments with a registered dietitian named Amanda Figge. She is extremely passionate and well-versed about nutrition and health and practices what she preaches in her daily life.

“Nutrition holds the key to the difference between going on or off certain medications, improving your performance and strength at the gym, raising energy levels, and reducing pain and inflammation, to name a few. There is no one-size-fits-all approach to healthy eating,” Amanda explains.

One of Amanda’s recent posts on social media really peaked my interest. She included a photo of Ensure. If you have IBD, chances are you’ve relied on these at some point. I know I have. In her post, Amanda wrote:

“Ensure is one of the worst “nutritional” beverages to supplement in the diet. Yes, I fully understand the body just needs to receive nutrients in any way, shape or form it can. But when longevity and health are a prime concern, QUALITY should be a priority. As you can see, Ensure provides an assortment of vitamins and minerals, but in order to get those nutrients, you have to consume a bottle chalk-full of chemicals and high-inflammatory agents.”

She went on to say:

“Sugar is the third ingredient. Corn maltodextrin is a highly processed refined carbohydrate. Soy protein should be avoided. Artificial flavors/sweeteners are no way to treat the body nicely. You’re basically consuming a multi-vitamin that was covered in sugar, lit with a cigarette and left in the middle of a freeway during rush hour traffic.”

Whew. Intense. If you’re like me—and have depended on these meal supplement drinks when you’re in the hospital, fighting a flare at home or struggling to eat—those words probably struck a chord with you, too. Amanda’s focus is to heal the body with whole foods and eliminating potential sources of inflammation. Inflammation is the immune system’s first response to an acute or chronic condition. Chronic inflammation can be caused by cancer and its treatments, autoimmune disorders such as fibromyalgia and Crohn’s, metabolic complications such as diabetes and even neurological conditions like depression.

“While I believe it’s important for all people to practice low inflammatory eating habits (focusing on a whole foods diet and limiting processed foods, chemicals and added sugars), it is especially important for individuals experiencing chronic inflammation to adopt these protocols. Ensure is often provided to those undergoing chemotherapy or recovering from a bowel flare-up. While it may be appropriate for some, creating a homemade nutritional supplement can have far less chemicals and more immune-boosting benefits,” says Amanda.

If you’re put on a liquid diet to calm your bowel and to heal, avoid lactose, gluten, sugar-substitutes and soy. Making homemade shakes allows you to have complete control of the nutrients you are putting into your body. Here are two of Amanda’s favorite smoothie recipes:

Creamy Chocolate Banana Smoothie

1 scoop of chocolate whey protein isolate (lactose-free and naturally sweetened)
½ frozen banana
½ small avocado
1 spoonful of peanut butter or almond butter
Handful of ice cubes
Unsweetened almond milk (1/2 cup- 1 cup)

Blend all ingredients in food processor or mixer. Using less almond milk will make the smoothie extra rich and thick.

Berry Bliss Smoothie

1 scoop vanilla whey protein isolate (lactose-free and naturally sweetened)
½ -1 cup frozen blueberries
½ frozen banana
1-2 handfuls of spinach
Unsweetened almond milk (1/2 cup- 1 cup)

Blend all ingredients in food processor or mixer. Using less almond milk will make the smoothie extra rich and thick.

Another option instead of whey protein isolate would be collagen peptides. These specific amino acids can additionally help support proper gut function and strengthen immunity. L-glutamine powder is an additional supplement Amanda recommends that promotes gut healing. This powder can easily be added to smoothies and beverages.

I don’t know about you, but the next time I’m on a liquid diet, I’m going to take Amanda’s advice to heart. While we may not have control of our well-being with Crohn’s and ulcerative colitis, this knowledge and background enables us to grab the reins and give our body the best shot to heal, in a healthy way.

Israel Outdoors offers once in a lifetime Birthright Israel trip for IBD and IBS warriors

January 29, 2018January 29, 20181 Comment

Deb Weiner traveled to Israel on her Birthright Israel trip back in 2010, like many young Jewish adults. Except she had Crohn’s disease. The Birthright trip is an important milestone for many young Jewish adults, unfortunately her inflammatory bowel disease created many obstacles. Despite making life-long friendships and memories, she felt the challenges of her dietary restrictions, and couldn’t take in all the monumental experiences like her peers.

This is where a trip for people with Inflammatory Bowel Disease (Crohn’s and Colitis), Irritable Bowel Syndrome and non-Celiac gluten sensitivity comes in. It’s a time for young adults to discover new meaning in their personal Jewish identity and connection to Jewish history and culture. IBD is most commonly present in people of Caucasian and Ashkenazic Jewish origin.

I’m so excited to announce that registration for this once in a lifetime trip opens TOMORROW (Jan. 30, 2018)!

Here are some key details:

o Dates: August 6 – August 17, 2018 (10) day trip

o Open to residents in the United States and Canada

o Medical staff will be traveling with participants throughout the trip

o Refrigeration is available for all injectable medications (including sharps containers)

o Meals that cater appropriately for all participants

o More scheduled bathroom breaks

o Travel accommodations that take additional restrictions (chronic fatigue, joint pain) into consideration

Wonder if you’re eligible to attend? Here are the requirements:

o Must have at least one parent of recognized Jewish decent

o Age 18-26 (post-high school)

o Have not traveled to Israel before on a peer education trip or study program after turning 18

o Have not lived in Israel after age 12

“A Birthright Israel trip includes airfare from major cities, hotels, meals, transportation within Israel, and costs associated with touring the country,” said Deb, who as a Crohn’s patient herself, is helping with the coordination of this program for Israel Outdoors.

Deb remembers wanting to climb to the top of Masada, an ancient fortress that overlooks the Dead Sea, but the climb took place after a very strenuous day, and she didn’t feel well enough for the climb.

“With this trip, no one has to miss out on anything. Accommodations are offered that I would have loved to have benefited from. For instance, for those who aren’t up for the hike, a cable car will take the group to the top of Masada. When it comes to sharing a room, there are less people per room than on a typical Birthright Israel trip, making it easier to maneuver, and taking bathroom turns and whatnot. Participants will be staying with peers who understand what they are going through,” said Deb.

The Birthright Israel trip is considered the most successful Jewish initiative in the world, with more than 600,000 young adults participating. Deb has truly seen her personal experience come full circle. She’s been the young 20-something on the trip, feeling isolated and concerned. Now, nearly eight years later, Deb has the foresight and the knowledge about what young adults just like her need, to make the experience one that is enjoyable and comfortable.

“We want to share an experience and create lasting memories and friendships. There shouldn’t be a reason not to go on this trip, so we are bridging the gap. We want those with IBD, IBS, and non-Celiac gluten sensitivity to have the same great experiences as those who go on Israel Outdoors’ classic Birthright Israel trip,” said Nate Edelstein, North American Director for Israel Outdoors.

Click here to register. You are encouraged to apply within the first week of open registration to secure a spot. The maximum trip number is 40 people and applications are accepted via email on a rolling basis. Israel Outdoors hopes to offer this trip every summer and possibly twice a year (summer and winter) if there is enough interest and demand.

Young IBD patient aspires to become Pediatric GI

January 15, 2018January 15, 2018Leave a comment

Madison Harbison. I’ll always remember the first time our paths crossed. I had just gotten off the stage after speaking at the Crohn’s and Colitis Foundation Patient Symposium Event in October. Her and her mom, Michelle, approached me outside of the auditorium. Tears in their eyes. Smiles on their faces. I immediately felt a connection and knew this little girl was something special.

Madison was only three years old when she started experiencing symptoms. Bloody diarrhea was the first indicator. After E.coli and C-diff were ruled out by doctors, this little girl underwent a colonoscopy. Imagine that. Three years old. Drinking the prep. Dealing with everything in the bathroom. And not being able to understand why this was happening or knowing what was wrong with you. Being a little girl, naïve to what it means to have a chronic disease that would be a part of her, for her entire life.

Imagine how overwhelming it felt for her parents. Michelle said it felt like they were torturing their daughter. Madison is now 12 years old. She’s had a total of three colonoscopies, an endoscopy and an MRE. She’s been hospitalized due to flare ups three times. She has three siblings at home, so as she’s in the hospital or going to the doctor, her parents have to care for them as well. There’s a reason for the saying—’it takes a village’… because it really does.

Madison has indeterminate colitis. Her inflammation is centered around her colon. She also battles arthritis that is secondary to her IBD. Just like me, Madison is on Humira injections. Her parents give her the shot—and each time she gets anxious and upset before and after. As a 34-year-old grown woman, I still react the same way at times. So, I can only begin to think what it would feel like for her. Aside from Humira, Madison takes Sulfasalazine, Imuran, Vitamin D, Iron and a multivitamin.

When it comes to advice for fellow parents, Michelle says, “Try to connect with other parents who are going through the same thing. There are “support groups” on Facebook that have helped me so much. Do not give up hope. I have every reason in the world to believe that Madison is going to accomplish everything that she sets out to. This disease is only one part of the amazing person that she is. It does not define her. Also, as a parent of a child with a chronic illness, we are their best advocate. No one knows your child better than you do. If you think that something isn’t quite right, trust your momma instincts!”

When you talk to Madison she radiates strength and resilience. You can see it in her eyes. She’s very mature and well spoken. She says IBD has made her a stronger person. “It’s made me more responsible in the sense of taking my medication, thinking about what foods affect me and always telling my mom if anything is wrong.”

As far as her Humira injection routine (let’s be honest, we all have one!)…her parents take the pen out of the fridge and let it warm up for a few hours, to lessen the sting. Madison likes to use Pinterest on her phone as a distraction. She wipes her leg with the alcohol swab and nods at either her mom or dad so they know to start. Right before the shot, she relaxes her leg, takes a deep breath and pretends she’s anywhere but the living room couch.

Each summer, Madison attends Camp Oasis. It’s a unique experience where kids with IBD have the chance to be on their own, to make decisions and to take responsibility, while being in a safe and compassionate environment. All the campers have IBD. “Camp has really showed me that I am not alone battling this disease. It is the coolest thing to be surrounded by other kids who know and understand what I have experienced.”

Madison doesn’t let her disease hold her down. She’s an avid soccer, basketball and volleyball player. She’s gearing up to take the stage in “Annie” and she excels at dance. This girl does it all.

Guess what she wants to be when she grows up? A Pediatric Gastroenterologist. Madison wants to help kids who are going through what she’s gone through.

Out to lunch with Madi, taking on IBD together one day at a time.

I can without a doubt say, I know she’ll achieve this goal and follow her dream. She’s a true example of an IBD hero. Someone who hasn’t allowed her disease to rule her life. Someone who looks adversity in the face and says ‘not so fast.’ Someone who I admire and look up to, even though she’s more than 20 years younger than me. If you ever need inspiration—think about Madison during that next Humira shot, think about her when you’re taking that dreadful colonoscopy prep, think of her when you’re getting rolled down to that next CT scan. I know I will.

How surgery helped this Crohnie live her best life

December 11, 2017December 11, 2017Leave a comment

Connecting with those who battle inflammatory bowel disease over social media is cathartic and creates friendships–whether you’ve met the person or not. It’s amazing to me how quickly you can share a bond and relate to a complete stranger’s life experiences because they mirror your own. I recently connected with Samantha Rynearson of West Virginia.

She’s a 25-year-old wife and mom who was diagnosed with Crohn’s disease at the age of 21. She recently had a bowel resection and currently takes Stelara and Imuran to keep her disease in check. This week, Samantha shares an inspiring guest post about why surgery completely changed the course of her life for the better.

The best way I can try to describe Crohn’s disease is that it’s like an elevated version of Russian Roulette, but with food. In Russian roulette, only one of the guns holds a bullet. Prior to my surgery, for every 10 foods I ingested, eight of them caused me pain or were “triggers.” It was a game that I lived with and played daily for the past three years as I battled living with a stricture in my small intestine the size of a straw.

Let’s rewind to January 2017 – I made a News Years Resolution that I was going to lose the dreaded Prednisone weight. So, I wrote a meal plan, went shopping for healthy foods and was cutting out processed foods as much as possible. Unfortunately, four days into the New Year, I was admitted to the hospital with a small bowel obstruction. Apparently junk food from New Year’s Eve, mixed with a drastic change in diet, mixed with not being on steroids anymore – my intestines were not having it. So, nine LONG days of steroids, CT scans, bowel series, lots of morphine, and a new medicine, I was released to go home. I was told I couldn’t eat any raw fruits or veggies, nothing high in fiber and basically nothing healthy at all. No more New Year’s Resolution.

We tried new medications, but after eight months of no change in my small bowel, my gastroenterologist thought it was time to say goodbye to the diseased portion of my intestines. I remember the phone call from her just saying “I’m going to give this to you bluntly, you need to get them out.” At first, I was shocked, then angry that my body was failing me. I brought my husband to my surgery consultation, and I’ll never forget the look on his face as the surgeon was asking me very detailed symptom questions and I was answering them honestly. It was a look as if I had by lying to him for years. Even my husband, the person I spend every waking hour with, have been with for almost six years and since I was diagnosed, didn’t fully understand how bad my disease had gotten in the last three years.

As the time got closer to my surgery, I got more and more nervous. I know the statistics… 75 percent of Crohn’s disease patients that have surgery will need surgery again… 20 percent will have a reoccurrence of symptoms after two years, 30 percent after three years… I was second guessing myself and remember thinking “it’s fine, I can live like this…” As a mom and a wife, I questioned how my family would make do without me… But as surgery drew closer and I was in so much pain that I could only eat liquids and was basically confined to the fetal position, I knew it was time.

When I woke up from surgery I was in the worst pain of my entire life (YES, worse than childbirth!) It took more than two hours to get my pain to a tolerable level and I remember thinking I made the wrong decision and that I was an idiot for doing this to my body and I should have just sucked it up and dealt with the flares and the pain. But man was I wrong. Once I could tolerate food and pass it, I was released after just FOUR days in the hospital!

Every day of my recovery, my daughter would ask to see my “boo boo.” She was super careful around me, and gave me so many kisses and hugs that I realized children really do understand more than we think. My husband was overprotective because he was so afraid something would go wrong during or after surgery and I would get so frustrated because I was only thinking of how it affected me, but in reality, it was a terrifying experience for him too.

Prior to surgery, I would eat and then pain would come. Now I eat, and I sit there waiting for the pain to start, but it doesn’t. It’s a hard concept for me to grasp. I can eat food, and not be in pain afterwards. It’s bizarre to me after three years of food = pain that it just changed by having my intestines cut out.

Now, I am almost 12 weeks post-op. I went back to work full-time after six weeks and was literally doing everything I was doing prior to my surgery and then some!! I have so much more energy to play with my daughter. I’m able to eat food when we go out to eat and not regret it later. I feel like surgery has had a positive impact on my marriage and that I have a better relationship with my husband. I feel like my daughter is getting to know a new “fun” mommy that isn’t always laying on the couch with a heating pad. I feel like my friends don’t even know what to do when I respond to their text messages or say yes to hanging out!

Getting surgery has changed my life in just 12 weeks. I can’t even imagine how much it’s going to change my life in the next year or two. I know the statistics aren’t in my favor, but until then I will totally be living my best life with a foot less of intestine and a bigger smile on my face!

You can connect with Samantha on Instagram: @crohnicallyfabulous.

Click here to follow her blog.

“It’s hard being a sick girl in a modern world:” A review of “My Flare Lady”

December 4, 2017Leave a comment

Meet Kathleen Nicholls. She’s a 34-year-old from Scotland who’s battled arthritis since 2009 and Crohn’s disease since 2010. She’s not your typical patient advocate. She’s an author who uses her sense of humor to not only inspire, but also make you laugh. She says things many of us think, but won’t say. Her most recent piece of work, “My Flare Lady”, is a great compilation of advice ranging from dating with chronic illness to finding self-worth despite the hardships we face on a daily basis. Rather than having a “woe is me” attitude, she’s the complete opposite. She’s incredibly candid and her honesty is what makes her writing so intriguing.

Here are some of my favorite excerpts from the book:

“When you are told you will be ill for the remainder of your life that feeling hits you tenfold. You suddenly find you are singled out against your will. You’re the sick partner, the sick daughter, the sick Chandler of your friend group.”

“Spend time with people who buoy you. Those friends and family who make you feel good about yourself, and are generally able to maintain an optimistic outlook. Those people in your life, if you have them, who radiate positivity and don’t flood you with negative thoughts, are really a priceless balm for a stinging soul.”

“When you are sick and in love your relationship may have a chocolate box full of additional worries to factor in, but it doesn’t have to stop you and your beloved from having a joyful life together filled with hearts, flowers, and painkillers strong enough to flatten an Ox.”

“So when I take medication and I start to play-act all the symptoms it says in the booklet I’ll have against my will; it’s disappointing to say the least. I read the little pamphlet that comes with my medication mostly for a giggle. I like reading aloud the various symptoms I may well encounter; mentally crossing them off and inevitably getting round to “death” in the small print. It’s funny (albeit in a fairly dark way I grant you). But a dark sense of humor tends to fit well with a chronic illness.”

“No sign of active ‘disease’ or current symptoms may encourage a medical professional to gleefully cry ‘remission’ but many patients still experience many ongoing differing symptoms regardless, meaning they certainly don’t feel the benefit of said remission.”

“The idea that even genuine moments of joy can be tainted by the anxiety of what’s to come is disheartening to stay the least. It’s something most people don’t have to consider.”

“It’s hard being a sick girl in a modern world. Therefore, it’s of incredible importance that as women we value one another, educate each other and help one another up instead of knocking each other down. Unlike Chumbawumba we can’t always get back up again so easily.”

“When I get nervous in the hospital I remind myself I’ve been through worse, that I survived it, all of it, an that I am here for good reason. It doesn’t always make me feel joy upon joy when I’m being prodded and probed by relative strangers, but it reminds me to get my priorities in order.”

That gives you an idea of what an incredible resource this book is for women in the chronic illness community. Kathleen’s ability to share her experiences and speak to others to make a difference, inspires me to be strong in my patient journey. Though we’ve never met in person, we’ve been “friends” on Twitter, Facebook and Instagram for years. I had the chance to interview her about her latest book. Here’s what she had to say:

What inspired you to write “My Flare Lady”?

“Suffering from chronic illness can be incredibly isolating and it can be easy to get caught up in your own anxious brain, I always aim to write in a tone which feels inclusive and open, I want fellow sufferers to feel they are not alone and our shared experiences can be overcome and maybe even laughed at. I love and cherish women and in living with poor health for most of my life, I’ve always felt a kinship with women in the same rickety boat as my own. I want to inhabit a world where we pull one another up and where women (and men) can feel comfortable in being open and vulnerable with one another on their fears and experiences. It’s so important to know we are understood. “

What do you hope people take away from your book?

I hope readers can take a feeling of camaraderie, a feeling that we are in this together and that there is absolutely no shame in talking openly and honestly.

What type of response have you received from the chronic illness community?

“So far so good! The opinion of the chronic illness is so important to me, so I take away as much positive and negative feedback as I can on board. People seem to enjoy the humour spattered throughout and find it to be informative and inclusive which is what I’d hoped for! This time round has been nerve wracking again so i try to only dip in and out of reading reviews for the sake of my own sanity/ego!”

Plans for future books in the works?

Yes, always! I’ve been working on a project based around the parallels between mental health and chronic illness and I hope to find more time to devote to that in 2018. I’ve also been playing around with ideas for short stories and longer-form fiction, but inevitably whatever I write always comes back to my diseased body!”

You can purchase “My Flare Lady” on Amazon. Click here to buy it, makes for a great Christmas gift—or a present for yourself. Kathleen is dedicated to helping others feel less alone and afraid in their fight with chronic illness. As someone who’s battled Crohn’s more than 12 years, I can tell you firsthand her words empower me to be strong. I constantly find myself nodding along while I’m reading and even laughing out loud. You can follow Kathleen on Twitter and Instagram @kathfantastic.

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an unobstructed view

Tag: colitis