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Keep Fighting Toward Your Fitness Goals

So I thought I’d share how difficult it is to live with a chronic illness and try and stay fit.

The picture on the right was last year… when I had just had a colonoscopy to determine how inflamed my bowel was. Shortly after, I was hospitalized due to my colitis. In that week I had lost around 8kg in weight in the space of 5 days. Everything I ate went straight out. I had been in decent physical shape externally but internally I was in bits. I felt incredibly weak. I had no energy, but I still tried to work and live my life as normally as possible. At the time I even tried to celebrate the fact I looked half decent. 🙈 But when you look at the photo closely, I look very skinny. I was then put on some heavy duty drugs to get my colitis in check. Gained loads of weight in hospital and then went home.

Fast forward to may of this year. I’ve managed to get to a decent shape however I’m the strongest I have ever been. I manage to beat my personal gym goals every week and my colitis seems to be under control. 🤛👏

I saw this photo in my feed and wanted you to understand that physically and mentally I’m in a much better place. Everything is going in the right direction and with more hardwork and dedication I’ll get to where I want to be.

Even last year I said I’ll have to start my journey again. It really got me down but if something is worth doing… it wouldn’t be easy….or everyone would do it 😅👌

It doesn’t matter where you are in your IBD journey. It will always keep moving forward it you BELIEVE you can do it

IBD May Be a Beast, But It Is Worth Fighting

I was at the top of my game having just graduated college with a Wall Street career all lined up and BAM, just like that, the colitis hit.

At the tender age of 22, when my life was just supposed to be beginning, my life became a perpetual case of where’s the nearest bathroom and having to bolt to avoid accidents. Between wearing diapers and trying to date while popping pills and using enemas, I began to realize how tenuous life is. It was a scary proposition because my dad passed away at 39 years old from a wicked case of Crohn’s that turned into colorectal cancer, and his sister quickly followed suit. And here I was, barely awake from my first of 100+ colonoscopies, hearing the words ulcerations and inflammation thrown around. It was unnerving and terrifying all at once.

Today, 12 years, 20+ surgeries and hundreds of procedures later. I’m happy to say that I’m still alive and kicking. I continued working in investment banking, taking time off to mend from surgeries until the stress, the fatigue and constant flare-ups did me in enough times. A decade ago, after returning from my 24th birthday in Cancun, I developed a horrible case of food poisoning and I was never the same again. I took antibiotics, which gave me c.dificile, a debilitating infection caused by antibiotic overuse. It resulted in 15-20 bowel movements a day, watery diarrhea, nausea and dehydration.

And that c.diff subsequently brought about a never-ending colitis flare that lasted 8 years. I cried in my former gastroenterologist’s office as I had an accident in his hallway and as I continued to lose weight and along with it, my sense of self and personality. At the end of 2007, I was 135 lbs. By mid-2008, I had tried every medication and alternative treatment under the sun, lost 50 lbs., and was being fed by an intravenous PICC line in my arm. I was dying.

I was rushed to the hospital where my surgeon removed my colon on the 4th of July. As I found out later, he and his boss, the chair of colorectal surgery,

…were unsure I would survive the operation. Heck, I was certain I wouldn’t.

But I had no choice. I was told death was certain if I didn’t have surgery. As Independence Day came and went, I woke up alive and very thankful to no longer be dependent on a disease-ravaged colon. And overnight, I found myself a new bff, my stoma Snuffleupagus, as named by my ever-devoted husband.

It took about 2 months of receiving IV nutrition and antibiotics before I began to eat more than a morsel of food. And how can I forget spending my 25th birthday in the hospital with yet another bout of c. dificile? I recovered nearly 6 months later and went on to have some more surgeries so that my surgeon could fashion a j-shaped pouch from my small intestine, which would allow me to defecate like a normal person again. Before long, I developed pouchitis, a new brand of inflammation that hits in the j-pouch and causes IBD symptoms of bloody diarrhea 20 times a day.

After several months of on-again, off-again pouchitis, I was left on a rotation of antibiotics for a few years. That was until the pouch began to fistulize, or burrow holes into other organs. My diagnosis was changed from UC to Crohn’s. I developed a total of 5 rectovaginal abscesses that became full-fledged fistulae, which resulted in UTIs galore along with immense pain and bleeding, in addition to multiple surgeries. Along with it, I developed a whole host of extraintestinal joint and dermatologic manifestations of the Crohn’s.

To allow the fistulae to heal, I was yet again rushed to the operating table and was given a stoma. I was again fed by IV lines as I began to retry biologics; when none of them worked, I was told to have the pouch excised. I had exhausted all my options and fought so hard for 6 years to keep that pouch. I felt like I had failed.

My pouch was removed, and I was left with a large wound and a permanent ostomy. Except the wound never closed like it was supposed to. I bled for months and went for a second opinion at the Cleveland Clinic where I was told that the Crohn’s had continued, and pieces of j-pouch and rectum were still inside. There was a massive honeycomb-like abscess in my pelvis where the j-pouch once was. According to MRI reports, a pelvic fistula had formed and was headed for my spine. I was told it could paralyze me. Major corrective surgery was my only option. I was given a PICC line yet again to deliver IV antibiotics and restarted Adalimumab.

I went for a third opinion at Mayo Clinic where the surgeon wanted to try a new technique. He re-excised the pouch 3 more times so that no pieces of bowel would be left behind to cause the Crohn’s to spread. He left a wound the size of a small football and I was left with a wound VAC attached for 4 weeks thereafter. Every alternate day I had a procedure under sedation in my room to debride the wound. The VAC was pulled after a month and I was left with a 3-inch deep wound for my mom and husband to pack.

After such excruciating pain, I thought I was out of the woods, but another RV fistula was found, which was perplexing because I had no rectum left. It was just a hole, something I was told had only been seen twice before. My doctor prescribed antibiotics, 6-mp and a double dose of Ustekinumab, which was still in trials for Crohn’s. It took several months of misery, but the wound finally closed, and the fistula was untraceable.

Come 2016, the word “remission” was being thrown around for the first time in my life. And I didn’t know what to do with myself. When a disease snatches one’s womanhood, how does one begin to resurrect oneself?

Nevertheless, after 3 near-death experiences, I am thankful to be alive and for every single surgery and every single breath. Every time I have fallen, I have picked myself up higher than before. And that is my very own personal miracle and my greatest achievement to date. My medical staff, my friends and family and the Crohn’s and Colitis Foundation are my rocks, my backbones and a source of constant support. Every time I lose hope, they help me stay afloat.

A year and a half later, yes, I have 8 new chronic diagnoses to manage, but I refuse to go down without a fight. My battle with Crohn’s has given me a newfound appreciation for life, a joie de vivre, like no other. Not a single day goes by without me remembering how far I’ve come and how much life I have yet to live. I may not be able to work but I am able to volunteer in between health crises. Co-facilitating the Foundation’s Women’s Support Group has given me a voice, a platform to raise awareness for these awful diseases and help women like myself advocate for treatment and maintenance of care.

IBD may be a beast, but it is worth putting up a fight for your loved ones and most of all, for yourself.

IBD may derail our careers, educations and relationships but it cannot take away who we are at our core. We must keep on fighting the good fight and never lose hope.

Here I am today, continuing to fight in the memory of my late father, for my dear mother and husband as well as all the friends who have stood by me along the way. I fight for new treatments to be developed and for a cure someday. I fight for you and me, for all of us at the Crohn’s and Colitis Foundation.

Diabetes Doesn’t Control Me

At 49 years old there couldn’t have been a more pronounced time when I needed my mommy most, but at 80 years old she was suffering through her umpteenth battle with cancer and a complicated surgery.  Somehow it didn’t feel right to burden her with my diagnosis.  So there I was, just shy of turning 50, with a life-changing, devastating diagnosis of Type I Diabetes and without my mother to console me. No one can feel your pain or offer support in times of crisis like a mother. As a mother of 2 boys myself who have been afflicted with food allergies, Celiac disease, ADHD and Asperger’s I was no stranger to offering comfort.  I’m just not accustomed to receiving it. I’ve always been strong, emotionally strong I mean.  There was no time for self-pity, for sadness for failure.  Failure meant death.  My friends and family offered support and kindness but no one can really understand the depth of fatigue and fear the disease brings. The persistent need to monitor my blood sugar and account for every scrap of food takes its toll; it’s exhausting.  

Ultimately I made a new best friend, my Dexcom CGM.  I go low in the middle of the night, more often than I should, and definitely more often than I like.  It’s always there for me and I’m thankful for my little pink receiver that wakes me up and shouts EAT SUGAR, figuratively of course.  I’m doing great: still exercising a ton, eating healthy, and living life. My purse is heavier, the TSA screening takes longer and everyone has seen my muffin top when I inject in a restaurant. Despite all that I’m in control.  I’m winning.  Diabetes doesn’t control me.

Life With Crohn’s Is A Struggle, But I Am DETERMINED.

Normal. This is what everyone seems to strive for. However, this is definitely not me. I live my everyday life experiencing things a normal person doesn’t, and hopefully never will.

For an eighteen-year-old, I have endured a lot of pain. How? When I was sixteen, I started experiencing weight loss, abdominal pains, loss of menstrual cycles, fatigue, the list goes on. I thought it was just from being so busy with school and basketball, so I shook it off. Then, at the basketball state championships, my body started to act much worse. Eating food was irritating me, drinking water was irritating me, any activity was hard; I just wasn’t myself. So, I decided it was time to do something about it.

In all honesty, I never thought this would end up changing my life, but that is exactly what happened. I went to my pediatrician and they gave me a pregnancy test. I knew that wasn’t what I was experiencing, so I knew the test would be negative.  They sent me to a gastro doctor. He ordered me to take some tests and gave me a colonoscopy and endoscopy. Immediately, he diagnosed me with Crohn’s disease. Being a sixteen-year-old, I immediately thought …”What? My chromosomes are off?!” Then, he explained what Crohn’s Disease was.

Being a sixteen-year-old, I immediately thought …”What? My chromosomes are off?!” Then, he explained what Crohn’s Disease was.

Crohn’s Disease is a chronic disease and a form of Irritable Bowel Disease. Basically, my immune system attacked my intestines, causing ulcers and things of that nature. So, all throughout my intestines are painful sores. Certain foods – in all reality most foods – activities, rest, and life in general, irritate them. This causes extreme abdominal pain, diarrhea, constipation, fatigue, being sore, mood swings, and causes life to be very difficult. Also, the intestines don’t absorb nutrients like it is supposed to, causing malnutrition, weight loss, and loss of menstrual cycles.

My gastro started me off on Asocol and Prednisone. When I took those, I got way worse. I started dropping weight left and right. People thought that I had an eating disorder. I heard that so much I began to believe them. This all caused me so much pain. I even noticed people distancing away from me because they got depressed just looking at me. I started to get weak, sports became harder for me. However, I somehow managed to train harder and make the All-Star basketball team, captain of the basketball team, and the MVP award. I am a person that won’t let anything stop me. I have tons of determination and love to prove others wrong.

Despite all this, my life was a wreck. I could barely eat or drink anything. I couldn’t keep food in because of how much pain it gave me. All I wanted to do was exercise because it helped me feel better.  But I began to notice that I grew tired faster, and surfing became way harder for me. This realization depressed me. Surfing is something I really enjoy.

surf1

Myself, my family, friends, and even my doctors were all watching me slowly wither away. I lost around 30 pounds very fast and was way underweight. My gastro ordered me to take more tests, gave me another colonoscopy and endoscopy, but couldn’t seem to figure out how to help. Desperately, my gastro tried a new medicine on me called Imuran. This has not helped either. The summer after I graduated high school, I felt God telling me to go see a holistic doctor. I remember thinking, “Lord, You know we don’t have money for this! If this is your will, however, I trust You to supply the way like You graciously promised in Your Word.” We took a step of faith and acted on His request. I have to say, I DO NOT regret it!

Yes, this is expensive, but I am able to eat, drink, and to live! No, my body is not like it used to be, and I still experience these symptoms, but I am way better than I was in just a few months! I have gained around twenty pounds, started lifting instead of cardio, and am eating more. I changed my mindset and am starting to enjoy life more again. I started a blog on Instagram called @thenuttycrohnie, drum for my church worship band, (of course) ball at the courts, attend college, surf, and work.

I have to admit that all of this is still very hard for me. I still don’t have my menstrual cycle. (Not that I’m complaining about that! I hate periods as it is!) But, I know it is something I should have. Unfortunately, I can only work one day a week due to my health, and even that is hard. But I am so happy to see these improvements! A little goes a long way! I know one day I will be a bodybuilder, I will be able to work, I will have more energy! It’s all in time and effort! Yes, life is a struggle, but as always, I am DETERMINED to prove others wrong.

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Much love! Would appreciate you follow my journey and recipes on my Instagram blog @thenuttycrohnie. Thinking about starting a blog page on a different site as well! Should I? All credit to my Savior Jesus Christ! Thanks for reading!! Blessings!

How Lyme Disease Became A Blessing

I will never, ever forget the day I was diagnosed with Lyme disease in 2014.  I was only fourteen when I received the life-changing phone call telling me my blood test had come back positive for Lyme.  For years I struggled with a plethora of undiagnosed health issues and desperately searched for answers.  Little did I know how much this phone call would really impact my life (and for the better!).

Battling a chronic, debilitating disease is, to say the least, not easy.  I have a constant, excruciating headache, joint pain, stomachache, dizziness, nausea, and overwhelming fatigue.  You couldn’t guess that I’m sick by simply glancing at me or that my treatment consists of 50 pills per day (no, that’s not an exaggeration), multiple antibiotics, and weekly IVs and injections.  On the outside I may not look like I’m fighting a disease, but I battle this invisible, chronic, nasty disease every second.

Being sick has denied me of many opportunities and robbed me of activities I previously took for granted, such as functioning like a normal teenager, spending time with friends, and playing on my high school golf team.

However, I would never change this experience because of what it has developed within me— strength, perseverance, compassion, inspiration, and calling.

Lyme disease attacks the stomach as well as the entire body, so I developed food intolerances to gluten, dairy, and soy among many, many other things.  Honestly, I didn’t even understand what gluten was when I was told a few years ago that my body didn’t tolerate it well.  As a result, I had to begin learning more about nutrition and focusing on the foods I ate more than I ever had before.

I read countless articles and books about food, and the more I read, the more I became intrigued.  I realized I have a passion for health and nutrition.  This is how Health and High Heels, my blog and website, began!  Health and High Heels is a platform for me to share my love and passion for healthy living with the world and to inspire others.  I post healthy recipes I develop and write about healthy foods and restaurants I find both locally and in my travels.  And I love high heels, so of course I had to include that in the name!

Despite my struggles, I view Lyme disease as a blessing.  The key is that I’ve chosen joy despite my trials, and I’ve found great joy in educating others about nutrition, sharing my healthy recipes with the world, and hopefully pursuing a career in medicine to help others who are sick like me.

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You can find Health and High Heels on Instagram (@healthandhighheels), Facebook (Health and High Heels), Twitter (@healthhighheels), Pinterest (@healthhighheels), and my website (Healthandhighheels.org)!  These social media platforms are where I share my recipes, photographs, “fun foodie facts,” and healthy product reviews.  My goal is to excite others about healthy living and to encourage them to try a recipe or two, visit the local farmer’s market for fresh, organic produce, or even come up with original recipes!  Overall, I urge everyone to begin discovering what healthy living means in his or her own life!

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