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.

The art of storytelling as a patient advocate

April 9, 20184 Comments

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

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

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

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

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

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

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

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

Reflecting on motherhood & Crohn’s: Year One

April 2, 2018April 2, 20185 Comments

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

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

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

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

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

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

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

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

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.

Hospital bag essentials: What to pack & where to find it

March 19, 20184 Comments

If you battle inflammatory bowel disease, chances are, along that journey you’ve been blindsided by a flare that sends you to the hospital. One of the hardest things to do is try and pack a bag for the hospital while you’re doubled over in pain and can’t think straight. This week, a guest post from my friend, and fellow IBD advocate, Amanda Osowski. Amanda shares the hospital bag “must haves,” so you can be prepared the next time around. Amanda, take it away…

As a Crohn’s patient, my often urgent, sometimes frequent trips to the hospital used to leave me wondering how I could better prepare for these moments, when they arrive.

For several years, I have been keeping a mostly packed hospital bag. Today, I operate off a combination of a mostly pre-packed duffle bag, along with a note on my phone of a few items to add to the bag before I head to the hospital. This has allowed me to feel slightly more in control of the times my body does not cooperate.

Steps for filling a pre-packed hospital bag:

Start by finding a good duffle bag. I have found that ones with internal/external/side pockets are best for me to keep things organized. (This is mine!) Often bags used for working out/the gym are good candidates for this purpose based on size. Amazon has many options, and stores like Marshalls/T.J. Maxx often have name brand bags for inexpensive prices.
Records:
1. Keep a printed list of current medications, supplements, allergies, doctors and their contact information. This is much easier to reference in the ER or in-patient with multiple doctors rounding.
2. Have a printed copy of any medical documentation from your providers – especially if you have a port, picc or central line, an ostomy, feeding tube, or other medical devices/necessities. I also store these on my cell phone, so I have a mobile copy.
3. Share with your parents/spouse/friends where this bag is kept, in case you are unable to grab it before becoming admitted.

Essentials

3-5 pairs of underwear
4-6 pairs of socks with grippers on the bottom. I really like yoga socks like these or these or these!
Flip flops or slide shoes or slippers with grippers on the bottom (for leaving the room).
Glasses/Case or Contacts/Case, including cleaner wipes/solution
Hand Sanitizer / Wipes
Lysol Spray
Pen/pad of paper or notebook
Phone charger
- I would recommend either purchasing an extra 6ft. or 10ft. cord on Amazon to keep in your bag, or purchasing an extension cord to help with outlets that are in inconvenient places
- Also – wall plugs like this that have the ability to charge more than one item at a time are great.
Ear plugs (in case of roommates or beeping IVs!) – I like these or these
Eye masks (to sleep w/lights) – This one is my favorite.
Hard candies to suck on/throat lozenges for dry throat

Clothes:

Note: I don’t have a ton of clothes that I like/find comfy, and because I often want my favorite items when I’m in the hospital, I usually keep these on my “To Add” list (see below)

2-3 Comfortable bottoms (PJ pants, shorts, leggings, sweatpants) – loose fitting is best
1-2 Zip up sweater/sweatshirt/fleece in case it’s chilly
(Men) 3-5 tank tops or tee shirts with loose neck/arms
(Women) 3-5 Tank tops with built in bra or tee shirts and sports bra with no metal

Toiletries

Toothbrush/Toothpaste
Mouth wash
Deodorant
Hairbrush/Comb
Hair ties/bobby pins/elastic headbands
Dry Shampoo (My favorite listed here, and Target often sells travel size bottles for $5.99)
Shower items: shampoo/conditioner/body wash/razor
Lotion
Chapstick
Face wipes – these are my favorites
Wet wipes
Calmoseptine!
Nail file/nail clippers
If you’re female, tampons/pads just in case!
Body spray like this!

Comfort

Toilet Paper (As a Crohnie – my bottom often cannot handle the hospital 1 ply)
Stuffed animal
Soft blanket (I’ve found my favorites at Marshalls or Home Goods)
Pillow (or your own pillow case)
Hair dryer (if that’s important to you after hospital showers)
Bathrobe (if that’s your thing – I don’t keep one in my bag)
Laundry bag/bag to keep dirty clothes separate from clean ones (I just keep a few plastic target bags in my duffle)
Kleenex/Tissues if you prefer soft ones
Heating pad
Durable/tall refillable water bottle
1-2 sealed bottles of water (yourself + caregiver)
Photos – friends, spouses, pets. While most of us have these digitally, sometimes it’s nice to put a small frame on your hospital windowsill or nightstand

Entertainment

Magazines / Books – physical or downloaded to your phone/tablet
Deck of cards or small game
Headphones
Coloring book/colored pencils or crayons or markers

I use small makeup size pouches or bags to organize things together (ie: electronic related items, toiletries, etc.), and keep this all in my duffle bag, which lives in our guest room closet. This is important for me to remember, in case my husband is out of town and a friend offers to swing by our place and pick it up from me!

I mentioned my “To Add” list that I keep on my phone. Here’s what’s on it!

To Add:

iPad + charger
Laptop + charger
Clothes (See above!)
Snacks: Including this obviously depends on your current intake abilities, or your caregivers, as well as your regular hospital’s offerings.

That’s it! If there are things on here that aren’t your jam, just leave them out or substitute with something more your style!

Connect with Amanda on social media! While she shares posts about her health adventures and patient advocacy efforts, she also share lots of other great content too!

Instagram

Twitter

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.

A book review: The Complete Guide to Crohn’s disease and Ulcerative Colitis

February 26, 20182 Comments

When you’re diagnosed with inflammatory bowel disease, no matter what age or stage of life you are in, it’s a big shock. Navigating this newfound identity, label, diagnosis and these unchartered waters can be overwhelming. As someone who’s battled Crohn’s disease for nearly 13 years, I’m the first to admit, that first year was brutal. I recently read a book entitled, “The Complete Guide to Crohn’s Disease and Ulcerative Colitis”—A Roadmap to Long-Term Healing, by Alexa Federico. It’s a good thing “roadmap” is in the title, because that’s exactly how I felt while taking in each passage.

Alexa was diagnosed with Crohn’s disease at age 12. She’s now 23 and says, “A lot has changed since my diagnosis! My mindset is probably the biggest change I have gone through. I began this autoimmune journey as a child, holding onto a grudge against my body, bitter about the foods I couldn’t eat and the pain I felt. I felt like my body betrayed me and that I would be a victim my whole life. Over the years, I slowly started realizing that these lifestyle changes that I followed begrudgingly were the very things keeping me healthy. From there, I accepted my lifestyle and started to become interested in nutrition and other ways that people can influence their own health. Today, I couldn’t be more grateful for the path I have walked. I know my experiences and the knowledge I have gained have led me and my family to make smarter lifestyle choices and now I am helping others to do the same.”

No matter where you are along your patient journey, this book will speak to you. Whether it’s how to find a solid support system and how to detach from the “Negative Nellies” in your life or what types of alternative medicine and selfcare options are available—there’s something for everyone. I personally found the techniques for managing stress to be really beneficial.

In one passage, Alexa writes, “I want to stress to you this point: healing is more than a physical process. Once you have accepted IBD, it’s important not to dwell on “Why me?” Instead of focusing on what you can’t change (the fact you have this illness now), focus on what you can change. Your healing will be limited if you do not move past the pity-party stage. We all do it; just don’t make it your new life.”

That attitude. That perspective. That’s how I choose to take on Crohn’s. This book is helpful to not only those with IBD, but their caretakers, family and friends. It provides an inside look from the patient prospective, while showing that there’s a big world out there when it comes to healing, managing and feeling empowered every step of the way through your patient journey. I would have given anything to have had this book available when I was told at age 21 that I had Crohn’s disease.

Alexa says reflecting on her personal experience as a child being diagnosed with Crohn’s inspired her to write this book. “I remember my medical team in the hospital going over the diagnosis with me and my parents, but they gave us little direction to go in. We just had my prescriptions and a few words on dietary advice, but other than that, it felt like we were on our own to figure it out. Since then, I have learned so much and I felt like writing a book was the way to share it with people who are getting started on this journey.”

As a fellow patient and advocate, I can assure you this book is one that will educate you, comfort you and help guide you through periods of remission and flare-ups. It’s a reminder that living well with IBD is possible, but take taking on IBD is a multi-faceted approach.

“I want readers to feel a sense of empowerment after reading the book and realize that there are many ways they can control their lives. I want them to feel equipped to try out new health management strategies and determine what feels good for them.”

“The Complete Guide to Crohn’s Disease and Ulcerative Colitis” is available on Amazon. Be sure to check out Alexa’s awesome blog, Girl in Healing.

Taking on fatigue as a mom with Crohn’s disease

February 19, 2018February 19, 20186 Comments

I hear my baby saying “mama” gleefully from the playpen. Anxious for attention and snuggles. I hear this as I’m sitting on the toilet with the door open, paying the price for the cup of coffee I just consumed. It’s one of those days as a mom with inflammatory bowel disease. The all-encompassing fatigue is taking hold. I knew this the minute my eyes opened, and I heard Reid in his crib, despite a restful eight hours of sleep. If you don’t have IBD you may wonder what I’m talking about.

Let me try my best to paint a picture for you. My legs feel like complete jelly. My brain feels in a fog. I feel so lethargic; the thought of showering seems overwhelming. I’m not in pain. My stomach feels fine. But, there’s something “off” and you feel it with every part of your being.

As my husband helps me unload the dishwasher, I tell him, “I’m so fatigued”…he laughs a little and says, “well, you’re 34…you are getting old.” I explain to him it’s my Crohn’s. Sure, I may be in “deep remission”, I haven’t been hospitalized with a flare since my bowel resection surgery in August 2015 (*knocks on all the wood), but that doesn’t mean the disease doesn’t impact my daily life. My husband is amazing and never says anything malicious, but unless you live it, you simply can’t comprehend it.

I’m going to be vulnerable here. Please no judgement. The clothes I washed more than five days ago, are still in the dryer. Each day I told myself I needed to walk down 13 stairs and bring them up, but it felt like too much. This morning as my husband got ready for work, needing his jeans…I remembered…they were still in the dryer. I felt like a failure. As I rocked my son in his nursery today, it took too much out of my legs to be in motion. All I was doing was sitting, his little body on my chest. But the rocking felt like too much. As I laid him down for a nap, I went back and forth in my mind about whether I could muster up the energy to shower. I chose to. Mid-shower, I had a brainstorm to sit down on the seat and take some deep breaths while the warm water hit my body. When I stood up, I honestly couldn’t remember if I had put shampoo in my hair yet or if I had washed my face. Literally no clue. These are just a few examples. But this is the reality of being a mom with IBD.

I started beating myself up over the fact that the past two days I may have overdone it. Living in the Midwest, I didn’t want two winter days with temps in the 80s to pass without enjoying them. I knew the fresh air and exercise would be a welcome excursion for my little man and me. Did those two walks with the stroller push me to my limits? What is too much? What is not enough? At 34, you feel lazy when you can’t keep up or have to admit you’re just too tired. You look perfectly fine on the outside, you feel like those around you wonder if you try and take advantage of your disease.

Here’s my advice for anyone with chronic illness, specifically IBD, especially the parents out there.

Try not to beat yourself up over it. This too shall pass. You won’t feel this fatigue every day. As a matter of fact, days ago I had the music playing and I was dancing around with my son as I cleaned the house. I felt SO happy and so energetic. Focus on those times to get you through.
Self-care, self-care, self-care. Whether it’s going to get a massage, exercising, sitting on the couch and enjoying some tea or going to Target to shop by yourself. Do what makes you feel at ease. Do something for yourself every day.
Vocalize your exhaustion. If you don’t communicate your struggles, you won’t receive the comfort and help that you need. You are not admitting failure. You’re not waving a white flag and giving into your disease. Rather, you’re being strong enough to realize, in this moment, on this day, you need a little boost from those around you to get by.
Ask for help. Boy do I struggle with this. But, it’s imperative. Especially for first-time moms. Being a parent is hard work. Being a parent with chronic illness is on a whole different level. Hold your tribe close and call on them when you need them. You won’t regret it.
Rest. It’s ok to lay on the couch if you aren’t feeling up to doing chores. It’s ok to say no to a night out with friends. Give your body what it needs. Listen to it. This fatigue is real and by not listening, you’re only feeding into the problem more. You’ll thank yourself later.

I recently came across a statistic this week on Twitter from the Congress of ECCO (European Crohn’s and Colitis Organization) that stated, “Fatigue in IBD is experienced by up to 86 percent of patients with active disease and 41 percent in remission.” It’s crazy how common this is! For people with IBD, fatigue can be physical, mental or a combination of both.

Fatigue has a significant impact on the quality of life and needs to be talked about. If you’re like me and feeling fatigued, I hope you feel empowered to share and do what you can to combat it. Just know you are not weak, you are not lazy, fatigue impacts everyone on this journey differently. And most importantly, you are not alone.

A Valentine letter for Crohn’s

February 12, 20185 Comments

Yes, you read that title correctly. I used the word ‘Valentine’ and Crohn’s in the same sentence. I’d be lying if I said I would have been able to do that years ago. Hate would have been a more relatable feeling and word. As Valentine’s Day approaches and love is in the air, I’m choosing to look at my disease with my whole heart and to share my feelings with you.

If it weren’t for my Crohn’s I wouldn’t know my strength.

If it weren’t for my Crohn’s I wouldn’t have my perspective.

If it weren’t for my Crohn’s I wouldn’t know the meaning of a “feel good” day.

If it weren’t for my Crohn’s I wouldn’t be able to empathize with others on the same level.

If it weren’t for my Crohn’s I wouldn’t be able to see people’s true colors.

If it weren’t for my Crohn’s

I may have ended up marrying a person who really wasn’t about being with someone in sickness and in health.

If it weren’t for my Crohn’s I’d feel invincible and take my health for granted.

If it weren’t for my Crohn’s I wouldn’t be me.

In life there are triumphs and there are challenges. There are stresses and there are successes. There are highs and there are lows. I find embracing the good, the bad and the ugly enables us to reach our potential. The painful, low points are difficult in the moment, but in hindsight they push us to our limits and show us all what we are capable of.

People often ask me if I wish I didn’t have Crohn’s disease. I find it to be a loaded question. I’ve gotten to the point in my patient journey where I wouldn’t change a thing. So much of taking on this chronic illness is your attitude. There’s no sense in wondering and wishing for something that is not possible. Once you take a deep breath and stop living in your healthy past you come to realize that you were given this hand of cards for a reason.

Your voice, your experience, your journey has the power to inspire. You have the ability to change lives. You have the opportunity to show that invisible illness and everything that comes along with it doesn’t need to destroy your dreams.

While I know some days, weeks and months are going to be treacherous in this journey, do yourself a favor and stop being so hard on yourself. Love yourself. Love all of you. Even the part of you that is broken on the inside. I’ve been through the flare ups and the scares. I’ve overcome pain that causes me to pass out. I’ve weathered the storm of being wheeled into surgery. I’ve done hundreds of injections and blood draws and pokes and prods. At the end of the day, you rise. You take those steps to heal. You focus on getting better. You do all you can to make it through. Crohn’s and any chronic illness for that matter gives you this opportunity over and over. So, while we all tend to have negative feelings about our health and worry about what the next hour will bring, try and pause and stop for a moment. Think about all the beauty and insight it’s provided—and love yourself and your disease for a second.

XOXO,

Natalie

lights camera crohn's

an unobstructed view