Caregivers: The Greatest Blessing of All

ibd-caretakers

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.

Lyfestories: Learning to Love Yourself, Despite IBD

 

 

 

I started experiencing my first symptoms about a year out of school. I’ve always been a perfectionist and an over-achiever, and I suffer from an extreme fear of missing out, so I was really frustrated when I started experiencing what I thought was just persistent and unrelenting gastro. I was in my second year of University and had just started dating my first serious boyfriend. I was insecure and shy and didn’t want to draw attention to the fact I had bathroom issues, let alone used the bathroom for anything other than a wee in the first place (because I’m a girl and god-forbid we poo) so I didn’t tell anyone what I was experiencing and covered my dramatic weight loss with a lie that I was shredding for summer.

It wasn’t until I went on an annual family skiing trip to New Zealand that my parents witnessed the extent of my diarrhoea and my mum urged me to see the doctor. Assuming it was just a tummy bug my doctor prescribed me an antibiotic. Well, 3 courses of antibiotics later and the diarrhoea was still just as bad, if not worse than when I first started them. I was too self-conscious to go back to say they hadn’t worked for a 4th time so I ignored my symptoms for a further few months. It was only when I started seeing masses of blood in every bowel motion that I went back to tell my doctor.

……And just like that, I went from a carefree 19 year old with the world at her feet to a walking pharmacy forever fighting her own body.

I woke up from my very first colonoscopy and was diagnosed with Ulcerative Colitis in April 2012. I remember feeling completely overwhelmed, isolated and helpless. I’d never even heard of Ulcerative Colitis before and here I was being told how I’d never live a normal life again.

Massive doses of prednisone and chemo drugs managed to mask my symptoms for a good few years and I was able to return to some sort of normality until November 2014 when my health rapidly declined again and I began a 2 year long colitis flare.

You can run away from a bad situation but you can’t run away from a bad body, you have to stay and fight it. So that’s what I did. I stopped studying and dedicated 2 years of my life to healing myself. I tried everything from steroids and biologics to faecal transplantation, medical marijuana and cabbage juice, but every day I woke up I was sicker than the day before.

I’d love to stay I remained optimistic despite everything, but the truth is I didn’t at all. I had bad days. Really bad days. Days when I’d just sit on the bathroom floor with blood and stool running down my legs because I hadn’t made it to the toilet in time and cry hysterically at the life I’d be dealt. What I learned was that if you just change your mindset everything bad doesn’t seem so terrible. I found comfort in thinking that either way these diseases are rationed out by the Universe and someone out there was bound to get it, so in a sense I’m saving someone else from having it – almost like I’m doing a stranger a favor.

In September 2016 I had my first near death hospital admission where I was so malnourished that my body had started eating away at it’s own muscle and tissues for energy. I had my next stroke of death two months later when unbeknown to me my body had stopped producing it’s own hemoglobin and I was rushed to hospital for blood transfusions. At this stage I had exhausted all my options in both Western and alternative treatments and surgery became my only option. However, I’m incredibly stubborn and was completely opposed to having an ostomy bag. I remember saying I’d rather die than have surgery. But in December of 2016 I was actually faced with that decision….obviously I chose the latter. One year later I underwent my second surgery to create a j-pouch: an internal pouch with my small intestines. Now all I have to show for what I’ve been through are 10 very little scars on my tummy.

I always thought losing a part of me would make me lose who I am as a whole, but I’m actually more myself now than I ever was with my large intestine. I’ve learned to stress less about the little things, love myself as I am right now and always search for the positives, because almost every situation has them. Having IBD has shaped my life in weird and wonderful ways and even if I had the chance I’d never change what I’ve been through because it’s made me who I am today.

Lyfestories: Ijmal’s Outlook on Battling Ulcerative Colitis

I am Ijmal Haider, and I have Ulcerative Colitis.

I was diagnosed in November 2015, and prior to my diagnosis I knew very little about the illness. In a very short period of time, summer of 2015, I had lost a significant amount of weight; I was dealing with a lot of cramping and bloating. I went and saw my family doctor, and he said most likely it was stress related but just to be safe he recommended me to a gastroenterologist. Around that time I was dealing with a lot of stress, I was at the peak of my career in Real Estate development, working on the biggest project of my career, I was writing nationally for publications and newspapers, and I was dealing with lots of personal stress as well, so I believed it to be pressure related.

When I met with the GI she asked the pressing questions regarding my lifestyle, my workload, my self-care routines, and all the questions related to my symptoms. Based on the information she had she said it was important we set up a colonoscopy, she said she was suspecting it to be colon cancer. My scope wouldn’t be for another three months from that time. I didn’t want to worry anyone, so I kept her suspicions to myself until my scope. For three months I kept that information to myself and naturally stressed in silence.

In November of 2015 when I had my first colonoscopy I found out I had ulcerative colitis, not colon cancer. In a groggy state, post scope, I struggled to ask the proper questions to understand what the diagnosis meant, I was overloaded with photos and literature and prescriptions.

This allowed me to understand the severity of what I was dealt with, painting a vivid picture of the research I would need to do and the alterations I would need to make to my life. I quickly learned researching diseases on the internet was a trap that seemed to always lead to the darkest corners.

For two years I was consumed with my illness, what it meant for me. I was skeptical to make plans or have fun. My biggest fears were always what if I eat the wrong thing, what if I need to use the bathroom while out, what if I show any sign of weakness amongst my friends,family, and peers. So, I became a bit of a recluse. My illness had taken over my life, all plans revolved around ulcerative colitis. I had put my career, my passions, my creativity and dreams on the back burner.

Spring of 2017, when nothing seemed to be working to reduce inflammation or to make me feel better; I decided to explore Naturopathic medicine, in conjunction with my regular medications. I wanted to try every possible option, so I would have no regrets. In this process I learned so much, I learned the importance of diet, the importance of stress management, understanding what ulcerative colitis actually was and how it affected the body.

I was put on plans to reduce inflammation, create proper diets without irritants, and reduce stress. This definitely helped with many aspects of how I was feeling.

During this time someone close to me gave me one powerful piece of advice, he said “Ijmal, you are not ulcerative colitis,” which really resonated with me. My naturopath had mentioned to start journaling to help reduce the shame, anxiety, stress, and the isolation that the illness brought to my life. When I was diagnosed there were very few outlets I came across that assisted in tackling the psychological effects of having an invisible illness. This is where I decided rather than keeping a private journal I would create a public blog. My blog garnered attention and lead to many people around the world reaching out to me to share their own stories, or to thank me for sharing mine. I was uncovering a community, eliminating shame and stigma, and breaking down the isolation I had felt for the first two years of my diagnosis.

Fall 2017, a friend and I decided to start a web series, called ‘Help Us, YYC’ to tackle the stigma of living with gut issues and invisible illnesses. A tool to educate and help people feel connected and allow them to feel less scared about what they are going through.

In 2018, I find myself having increased inflammation and preparing to start biologic treatments, but I have also found my individuality, my creativity, my career, and purpose again. Through the community I stumbled upon and the stories I have heard I have never felt more prepared to tackle the next step in this journey. I found my peace through the idea of helping others in turn they have ended up helping me.

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!

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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