Caregivers: The Greatest Blessing of All

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As we wrap up Crohn’s & Colitis Awareness Week,

I reflect on the greatest blessing of all in my IBD journey: my caregivers, my dear mother and husband. From the constant rides into the city for doctors’ visits to packing wounds and changing PICC line dressings while helping me walk and shower after surgery, Mom, you picked me up when I was at my lowest points in life. From driving me to Cleveland Clinic and flying me to Mayo Clinic for surgery while spending countless sleepless nights in the hospital, Anand, you stood by my side when society told you you could have done better.

Many of our IBD journeys

would be incomplete without creating awareness for our caregivers and the act of caregiving. You see, folks, caregiving takes courage; it takes guts! When most people disappear from our lives, our caregivers stick around and show us our true worth as human beings, as partners, as sons or daughters, and not just as sick patients. Caregiving takes a real, unconditional love for the person who needs care and help during major illness. And, in the case of my caregivers, it has taken true dedication and perseverance to care for me through 20+ surgeries and hundreds of hospitalizations and procedures. In many ways, for my two caregivers, giving me life again has become their modus operandi, and for me, their love and support has become my ode for survival.

The thing is when we are young and chronically ill, it is next to impossible to ask for help. It makes us feel useless and ashamed that we can’t be as able-bodied as the rest of our peers. But to have two caregivers who swoop in every time, like the guardian angels that they are, is truly my greatest blessing. Thank you, Mom, and thank you, Anand, for being my two rocks. Every time I have wanted to give up, you have encouraged me to press on, insisting that my existence matters oh-so-much. So, if there is a single reason as to why I have kept fighting and facing this monster of a disease, it’s you both. You are my lifeline, the embodiment of love, and truly, my entire universe.

So, own your Crohn’s,

own your need for tender love and care, for there is nothing wrong with being taken care of sometimes. We too will have the opportunity to pay that kindness forward one day in our very own ways.

**This blog and my advocacy work are an extension of the love and support I’ve received from my caregivers over the years. It is an act of paying their compassion and humanity forward to you all, my followers and supporters. I dedicate this blog to my mother, my husband and my late father who fought Crohn’s Disease and colorectal cancer so valiantly and passed nearly 27 years ago. My IBD journey would be incomplete without the three of you.**

Rebecca Babcock: IBD Warrior

“Life shrinks or expands in proportion to one’s courage.” – Anais NinDueing

December 1-7 is Crohn’s and Colitis Awareness week,

and as an IBD Warrior, it is an important to take a pause and look at REAL life with a silent, incurable illness. There is no question that is hard, but it is also what WE choose to make of it. As I often say, each of us can do hard things.

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Having a chronic illnesses can understandably leave you living in fear of the next flair up… like becomes an insane game of “illness athematic”: trying to time the onslaught of debilitating symptoms with work or personal commitments (as if we have an ounce of control over any of it!), lying in wait of medication’s terrible side effects, or perhaps planning around the anticipation of potentially embarrassing social encounters. Aka: life can get very small… if you let it.

Last weekend I experienced a beautiful reminder that I can live a full life even during the hard times when I don’t feel well, or I am not sure I am up to it, I don’t look my best or can’t give it 100%. I went to a baby shower for a very best friend and then a “Friendsgiving” celebration, and while I could not partake in either of the beautiful and likely delicious cakes, I was reminded that showing up is most of the battle.

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The bottom line is my disease doesn’t define me and it doesn’t need to define you. It certainly takes courage and more than a fair amount of humility and honesty to show up to life, maybe not at my best, but on life’s terms. It is a lot better than not showing up at all.

#nocolonstillrollin,

Rebecca

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.

An Introduction to Lyfebulb Ambassador, Dane Johnson

Dane Johnson is a Natural Medicine Practitioner specializing in gut health. His expertise was established through his perseverance during a life threatening battle with Crohn’s Disease. He now runs a company and a non profit which aims to empower those dealing with Chronic Auto Immune Diseases. He is a recognized Motivational speaker, Actor, Host, Life Coach and leader in the natural medicine community. He looks to work with brands which embody like minded efforts and help build a stronger tomorrow.

Dane attacks Crohns/Colitis through his program – S.H.I.E.L.D. – he believes it’s not just one thing that creates a healing effect but everything combined. He loves to say Healing starts in the mind and the great energy always prevails! He uses a variety of nutritional plans and personalized plans to meet each specific persons needs.

To learn more about Dane and his journey, check out this podcast!

Painting To Heal My Body From Crohn’s

“Art is a wound turned into light” – Georges Braque

I was 21 when I was diagnosed with Crohn’s disease.  I was at the age where I was just beginning my adult life.  My life journey suddenly took me into a direction I wasn’t prepared for.  I was an outgoing social person who suddenly had everything taken away.  I had no control over my sickness.

For three years I battled with Crohn’s at its worst.  I lost an extreme amount of weight from not being able to eat.  Everything that was put in my mouth gave me agonizing stomach pain which then turned into extreme diarrhea.  I was a prisoner in my own home. Having to go to the bathroom 20 plus times a day became my normal.  But I could cope with the diarrhea, I could cope with the chronic tiredness, I could cope with the pain, I could cope with the joint pain that plagued my body, I could cope with the endless medication and the side effects it gave, but what I couldn’t cope with was the loneliness, the lack of control I felt I had over my life, and most of all, I couldn’t cope with not being the person I wanted to be.

After years of symptoms and trying medication to settle the Crohn’s, I formed an abscess on my large intestine which grew to the size of a football.  I was taken in for emergency surgery.  I was told when I wake up I will have a colostomy bag as there was probably too much damage to my bowel. I didn’t care.  I just wanted everything to be fixed.  I just wanted my life back.  When I woke up I remember the nurse saying ‘you didn’t need a bag’  I felt this was the first positive thing that had happened to me in years.  I slowly recovered from the surgery.  My body was so sick (before having the surgery), and the abscess had been slowly leaking poison into my body, so my recovery was very slow.

For the next few years, I suffered from bowel obstructions due to the scarring in my bowel.  I was placed in the hospital for a week, given IV medication and fluids, had a nasogastric tube inserted. The the pain and symptoms would pass.  My body started to heal.  My symptoms of Crohn’s started to stop.  I stopped all the medication, I stopped worrying about leaving the house in case I had chronic diarrhea,  I had no pain, I had my life back!

For 14 years I lived as if I didn’t have Crohn’s.  I knew the monster was being dormant in my body, but I lived like it wasn’t there. I met the love of my life and started a family.  I became a mother to 5 children and started working full time.  My life was extremely busy and I used that excuse not to look after myself.  My diet consisted of coffee all day and the take out food at night.  I would read and research different diets that people had success with to manage their Crohn’s.  I knew all the right things to do and eat, but my attitude always was ‘I’ll start tomorrow,’ but that tomorrow never came.  I knew I was a ticking time bomb, and if I didn’t change my lifestyle soon I would pay the price.  But I always had an excuse.  I started to destress my life by painting. I had always been creative and a free spirit.  I started to create art and found it was a way to emerge into emerge into a world where I could express who I was and who I wanted to be.

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Art became who I was and I finally found something I was passionate about and made me feel free.  I felt this was my way of doing something right for my body and mind, a way to destress from the hectic life I was living.  I continued to research different diets and lifestyles to heal my body.  But that research continued to only live in my mind and didn’t  make it into my day to day life.  My love of art and creating became my passion.  I felt my mind and soul healing and it had a calming effect on my life.

Then one day late 2015 I ate breakfast, and within 5 minutes I had diarrhea.  That one day turned into a daily occurrence.  Then the pain started. I pretended it wasn’t there.  I thought, if I could ignore it, it will go away.  But my ability to ignore it became harder and harder.  I started to take days off work, and started to have to cancel my plans with my friends and family.  But I still ignored it and didn’t want to face it.  I was too busy to deal with sickness.  I continued with my art as a way to escape what life was about to throw at me.

The day I knew the Crohn’s had awakened was the day I couldn’t wear jeans.  Wearing anything tight around my stomach was agony.  I knew the Crohn’s was back and I knew I needed to do something about it.  I went once again to my GP who told me straight ‘If you don’t deal with this now you will do no good to anyone’  she told me.  I thought of my kids and I thought of my husband.  I needed to face this.  My GP sent me to the ER.  They straight away admitted me to the hospital and started all the tests.  The MRI showed I had 30cms of my bowel affected by active Crohn’s.  I also had small perforations of the bowel.  I could no longer ignore it.  I was in the hospital for a week that time, then discharged for a week and back in for 10 days.  I was put on a high dose of steroids and started many long term medication that had success treating Crohn’s.  But the side effects from these medications are horrendous. I suffer from major tremors, my hair is falling out, major weight gain, insomnia, bad skin, extreme fatigue, low heart rate, painful joint pain in my hips, constant viruses, and my mental health was declining.  I took long unpaid sick leave from work.

Once again I was faced with everything being taken away from me. But this time I was a Mother, a wife and I had responsibilities that I never had when I was first diagnosed with Crohn’s.  The feeling of lack of control is one of the hardest things I find to deal with.  I learned very quickly I can only take it one day at a time, because how I feel today may not be how  I will feel tomorrow.  My home life quickly adapted to me being sick.   My husband and children quickly learned that they couldn’t rely on me anymore.  They all stepped up and helped out in their own ways.  Cuddles on the couch with me quickly became our way of making things better.

I started declining in my mental state.  Working in mental health I already knew how quickly it would be for me to sink into depression.  The feeling of loneliness is such a big part of this disease.  I found only a small handful of family and friends really understood what I was going through and supported me.  It is very easy to become let down and hurt by people when dealing with any chronic illness.  Most people didn’t understand how sick I was, or just assumed I was better.  Soon the invites, phone calls, and text messages stopped.  I started joining online social media support groups.  I was amazed how much this helped.  I gained so much knowledge on my disease and realized that the things I was experiencing, others were dealing with the same thing. Suddenly didn’t feel so alone.

I was able to work on my mental health.  I started trying to understand my emotions and why I was feeling the way I was at the time.  If I was feeling angry I would stop and focus on the real reason why I was feeling this way, most times anger equaled pain. When I was feeling lonely that was mostly because I had been in my bed all day, so I got up and laid on the couch around my family.  So each negative emotion I felt, I tried to connect with a reason and then changed my situation. I also kept reminding myself that the medication I was taking is playing a major part in my thoughts and feelings.

I continued with my art, but my whole way of creating changed.  Somedays I would only complete a background on canvas.  My hands shook so much I was unable to do anything with detail.  Somedays my art turned out dark and gloomy, other days it was bright and shiny.  I realized art was a way to express every feeling I was going through.  My art quickly became my therapy.  It became my healing.  Every piece of my art became an expression of my journey.  Every single detail that is on a canvas tells a story of what and how I was feeling when I painted it. I started creating journals.  I painted, drew and wrote every feeling down.  It was healing to read back and see how far I had come.  I started creating journals for others.  I gave them away to friends and family for presents, it soon became my passion for others to heal through being creative.

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I wish I could end my story saying I have gone back into remission and living life again, but I can’t.  Each day is a battle for me.  One day I will almost feel normal, and the next day I’m completely bedridden from pain and sickness.  I’m taking many prescription medications to settle the Crohn’s.  I struggle taking these as the side effects are sometimes worse than the Crohn’s symptoms.  I’ve also changed my diet, and am putting into practice everything I have learned.  I’m filling my body with probiotics, healing my gut with bone broth and eating clean and healthy foods.  I’m taking small steps to heal myself with diet, but most of all I’m continuing with my art as this is my biggest self-healing I can do.  I have found an amazing online community of people who experience what I do in their day to day lives.  It’s so helpful to have people who truly understand the struggle we all face living with a chronic illness.  Somedays I am able to support others, and then some days they are able to support me.

My future is still uncertain.  I’m still yet to find the right medication that works for me.  I’m still taking knowledge of different diets and lifestyles and making it work for me.  Trying to find the right combination is trial and error, but I do know that everything I am doing will eventually have a positive impact on my body and mind and hopefully put me back into remission one day.

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Invest In Yourself with Lyfebulb

Lyfebulb only launched a few months ago, but it had been a dream of mine for many years prior. I have always wanted to make an impact, to go against the norm and embrace innovation and new ideas to find solutions to difficult problems. Growing up, I enjoyed learning and being active more than anything. I excelled both in sports and in school. But above all, I was notoriously gleeful, — very few things seemed to make me sad. I had the unconditional love and support from my family. I believe that all of this helped me later in life, but a few things have changed dramatically – one being my confidence in myself and the other, my belief in happy endings.

I am still an optimistic person, in fact, some people would even argue I am too enthusiastic at times. I tend to see the glass half-full and to perceive obstacles as opportunities rather than hurdles. I thrive on socializing and working with interesting characters. Very few things make me happier, or give me more energy, than being surrounded by smart and dedicated people. I love debates and I encourage questions. It stimulates my mind and gives me a reason to go on. When I was diagnosed with Type 1 Diabetes in 1989 as a 16 year old with no previous “defects” or real defeats, I lost my belief in God and my belief to a certain extent in my parents’ ability to fix everything. I had already realized that my parents were not invincible (I beat them both in tennis, running, etc.), but I still thought they could keep me healthy and happy. Though Diabetes took that away from me; it gave me another reason to fight – not only to show to the world I was stronger and smarter, but also that I was a survivor.

This is what “invest in your own disease” is about. There is no one out there who can innovate, develop, fight, engage, analyze, or finance better than the ones who struggle with the actual condition every single day. I live this principle each day, and have throughout my career as a medical scientist, specializing in diabetes, and then working in the biopharmaceutical industry as both an investor as well as an executive, financing and developing product for people with diabetes and other diseases.

Lyfebulb aims to create a community for these people, to allow for them to engage in our four different divisions:

1: Lyfebulb Social Club for informal gatherings at great restaurants, where people can learn about a new technology or from each other, over small bites and cocktails.

2: Lyfebulb Impact for early-stage investments into companies or entrepreneurs that potentially could make a practical difference to people living with Diabetes, Celiac or Crohn’s/Colitis.

3: Lyfebulb Boutique for access to consumer products simplifying and improving daily life from a health and wellness perspective.

4: Lyfebulb Digital for online access through our social media, website and blog.

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