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Inside the Patient Entrepreneur’s Mind: Jon Margalit

Jon Margalit

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Jon Margalit is CEO & Founder of Complete Start. 

As a patient entrepreneur, can you describe your personal experience with IBD from diagnosis through your current daily management and how this experience drove you to innovate the space?

To make a long story short, I am a very social and outgoing person who enjoyed immensely being out with friends networking, in all types of social settings. I was also an avid gym goer and black belt martial artist. Once diagnosed with Crohn’s, I had to deal with all kinds of drugs and steroids to mitigate the ill effects of the disease and as a result transformed into a guy with acne all over who was afraid to leave the house at the risk of being too far from a comfortable bathroom.

With that being said, after trying different types of drugs, I realized really quickly that this wouldn’t change until I took matters into my own hands to find solutions. After some research, the one thing I found I really had control over was what I was consuming. I focused on what I could control and immediately thought to myself if I study this, and become an expert in food science, perhaps I might be able to make some drastic changes in how I’m feeling and looking. Inflammation causes the digestive tract to shrink so we [the IBD community] have difficulty digesting whole vegetables and roughage. I had the idea to freeze dry and grind them into a powder to consume micronutrient rich vegetables without digestive issues. I bought a freeze drier on amazon to test the idea.

What makes Complete Start unique and how does it meet an unmet need of the IBD community?

There are products on the market that are similar in nature, but we are the only ones completely organic and non-GMO. Our goal is to deliver the most complete and clean digestible nutrition for customers. As a result, the cost to produce has vastly increased. I quickly realized why our competitors didn’t produce the same quality of product because it narrowed the customer base. We are sticking to offering a premium product at price, staying true to our goal. 

Are there any other unmet needs of the IBD community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

 I think that the key to making a widespread, massive impact is to create more awareness for the products, services, and support that are available, so I’d love to focus more on community building. When I was first dealing with Crohn’s, I was not aware of the products, services, and people out there that were available to help me overcome. Out of instinct and pain I sought them out and created resources for myself, which was key to remission. If I could go back in time where that community already existed, and someone introduced me, then things would’ve been easier to deal with and I would’ve found a way out much faster. My goal is to try and bring us together in a community form beyond just introducing patients to Complete Start.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry?

The real answer is I was initially afraid to leave the house. I was afraid to be seen and covered in acne—steroids destroy you. Now, I want everyone to know that the fear they are feeling is not just them and someone like me can help alleviate those fears and show them the path. If I was able to breakthrough and overcome, they can too. It’s others in the community and the validation that I get from them when they reach out and say I read your story and it made me believe that perhaps I can get there too who inspire me. Other people continue to fuel my fire and my desire to keep getting out there to make sure that others are aware and can receive the comfort of a blueprint for healing. 

Lastly, what do you do for fun to manage the stress of running a business as both a person with IBD and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

Absolutely. There is one key and I think that it is just as important as food—it’s exercise. I mean it very passionately—I am a daily hardcore gym goer and when I go to exercise, I go hard. When I do, I feel tremendously better. Movement and consistent exercise is the only way to complete the healing puzzle and again, that is another element that people have control over. Jon Margalit exercise fitnessI would recommend to anybody who is suffering out there first to test, then heed to Dr. Sandborne’s advice of eating what makes you feel good, and you’ve got to be consistent with exercise. Don’t just go through the motions—do it with purpose and passion. Push yourself physically because there is no bigger healing element in the world. The blood flow, endorphins and sense of accomplishment after a workout is the single most impactful driver to get me into remission. Two things people will never regret are eating vegetables and working out. The exercise is the stimulus to the right blood flow and right state of mind to tackle disease and career—both mental and physical battles. There is no better way to deal with the pain and discomfort of IBD than exercise.

The Implications of Using CBD for Chronic Conditions: Here’s What We Know

Cannabidiol (CBD), a non-intoxicating compound in cannabis, has become a popular alternative to pharmaceuticals. CBD users can sometimes find relief from their conditions without harsh side effects. 

41% of cannabis users surveyed report swapping out other medications completely in favor of cannabis, while another 58% use cannabis and other medication or alternate between them,” researchers stated in a survey by Brightfield Group

While CBD may be a beneficial alternative for chronic conditions, it’s important to consider the implications of using CBD before changing your current regimen.

Diabetes

Studies have suggested that inflammation has a correlation with insulin resistance. This may be the result of the body not moving sugar from the bloodstream into cells, causing excessively high blood sugar. Obesity-related inflammation particularly limits glucose metabolism, resulting in high blood sugar. 

Researchers still don’t know exactly how CBD improves insulin resistance, but often credit it to the compound’s anti-inflammatory effects

According to a report on Type 1 diabetes from the Diabetes Council, “CBD can save insulin-forming cells from damage so that normal glucose metabolism can occur.”

It’s important to note that most claims being made are based on studies with animals, not humans. Using CBD to treat diabetes without more substantiated research and medical oversight could be dangerous. Until further human studies are conducted, CBD can’t be considered a direct treatment for diabetes. 

However, the anti-inflammatory effects of cannabidiol may be beneficial for managing secondary symptoms from the disease. For example, CBD has neuroprotective qualities and may prevent retinal damage.

Cancer

While there is anecdotal evidence of successfully treating cancer with CBD, no definitive studies can back this up. However, we do know that CBD plays a role in cancer prevention and seems to have anti-tumor effects. In a 2012 report, researchers explained, “Evidence is emerging to suggest that CBD is a potent inhibitor of both cancer growth and spread.”  

The U.S. National Library of Medicine explains that CBD is anti-proliferative, meaning it can stop, slow down, or reverse the growth of cancerous tumors. It is also anti-angiogenic, meaning it does not support the generation of new blood vessels, specifically ones that allow cancerous tumor growth. Lastly, it is pro-apoptotic, which means it induces cellular suicide of cancerous cells. 

In addition to these cancer-specific effects, CBD may help patients dealing with pain related to cancer treatment, such as pressure on the organs and nerve injuries. Patients with cancer are commonly prescribed opiates to manage pain, but managing pain with CBD may be just as effective with fewer side effects.

Unlike opiates, which mimic our bodies’ natural endorphins, CBD actually encourages the production of natural endorphins by interacting with a neurotransmitter called anandamide. As a result, CBD is a non-habit-forming pain-reliever. 

It’s important to consider the legal implications before using CBD for cancer, or any other chronic condition. Hemp-derived CBD is legal across the United States, with specific guidelines per state. Idaho, Nebraska, and South Dakota have strict, conflicting rules regarding CBD, so caution should be taken if you live in those states. 

Whatever state you’re in, be sure to get high-quality CBD from producers who follow the guidelines of the law. 

Multiple Sclerosis

According to Neurology.org, “inflammation occurs in the brains and spinal cords of people with a specific kind of MS called relapsing-remitting MS.” CBD has been shown to protect against this harmful inflammation

In a 2011 study with mice, researchers found that CBD diminished axonal (nerve) damage and inflammation. CBD also reduced microglial activation, an inflammatory process that occurs in the central nervous system and is attributed to conditions like MS, Parkinson’s, and more. 

CBD may help users get relief from their MS without causing the sometimes intense side effects that come with pharmaceuticals. Still, CBD may cause some side effects that users should be aware of. Side effects may include:

 

  • Anxiety
  • Changes in appetite
  • Changes in mood
  • Diarrhea
  • Dizziness
  • Drowsiness
  • Nausea

Anxiety and Depression

The hippocampus, the most widely studied portion of the brain, is responsible for the regulation of memories and emotions. Researchers believe the hippocampus plays a major role in depression, and have found that this region of the brain can shrink or decay in those with depression.

Fortunately, the shrinkage does not have to be permanent. The brain is very regenerative and can bounce back as new neural connections are made. This process is known as “neurogenesis” and is an important process to target for antidepressants, contrary to the prior belief that they just work to increase serotonin. 

Where does CBD come in? Research has shown that cannabidiol signals a serotonin receptor called 5-HT1A. This receptor is responsible for controlling many neurotransmitters, and is also the target of some anti-anxiety medications, like Buspirone. Activating this receptor can encourage neurogenesis, and potentially relieve symptoms of anxiety and depression. 

While each individual case is unique, anxiety and depression tend to go hand-in-hand. CBD may encourage the neural regeneration necessary to find relief from either or both conditions. 

Inflammatory Bowel Disease

Inflammatory Bowel Disease (IBD) is caused by — you guessed it — inflammation. A 2009 study found CBD was beneficial for colitis, a form of inflammatory bowel disease. Researchers induced colitis in mice and tracked their gut inflammation, finding that “cannabidiol, a likely safe compound, prevents experimental colitis in mice.”

Another review found “this compound may interact at extra‐cannabinoid system receptor sites, such as peroxisome proliferator‐activated receptor‐gamma. This strategic interaction makes CBD as a potential candidate for the development of a new class of anti‐IBD drugs.”

If you’re considering using CBD with other medications, consult your doctor first. Much like grapefruits, CBD inhibits the cytochrome P450 enzyme, which can prevent drugs from metabolizing properly. 

CBD could also negatively affect the liver by increasing liver enzymes. A 2014 review of CBD saw changes in the liver function of 10% of the subjects, and 3% had to drop out of the study to prevent further damage. Again, consult with a doctor if you want to use CBD for a chronic condition like IBD but are worried about the effects on your liver.

The Bottom Line

Americans spend around $1,200 on prescription drugs each year, which is more than the residents of any other developed country. The price of pharmaceuticals has risen without any improvements or innovation, according to CNBC. This makes CBD an exciting avenue as a potential alternative to standard pharmaceuticals.

It’s important to remember that the effects of CBD will vary by person, and that a lot of the claims we hear about CBD are in relation to animal studies and not humans. It’s also important to be as informed as possible before diving into the complicated world of buying CBD.

Still, many people find success with CBD for their chronic conditions. 

 

Macey Wolfer HeadshotMacey is a freelance writer from Seattle, WA. She writes about natural health, cannabis, and music.

Chronic Illness & Anxiety: A Chicken & Egg Scenario

Anxiety and depression are prevalent for those who suffer from chronic illness. In fact, one study found that 40% of Inflammatory Bowel Disease (IBD) patients had abnormal anxiety levels and this drastically increases to 80% when the patient is in a flare-up . With chronic illness typically, there is a feeling of loss of control over your own life which can in turn cause stress, anxiety and depression.

Chicken or Egg?

I was diagnosed with IBD 9 years ago and while I have learned to (mostly) manage the symptoms of my disease over time, I have yet to master the feelings of worry and anxiety. After having a bowel resection surgery, I have been in clinical remission but not without its bumps along the way. The fear of the unknown can do a number on one’s mental health. The possibility of a flare-up always lives in the back of my mind. I can remember the countless visits to the hospital, procedures, medications, and extreme pain. I was barely able to take care of myself, and now that I have children, I worry that if I were to have a flare-up, I wouldn’t be able to take care of them or participate in their lives in a meaningful way.

I know that having a chronic illness has increased my anxiety levels, but does stress and anxiety exasperate my symptoms? Research shows that stress can worsen symptoms and cause a relapse of remission. From WebMD “When someone is under stress, the body gears up for a fight-or-flight response by secreting certain hormones, including adrenalin, as well as molecules called cytokines. They stimulate the immune system, which triggers inflammation. In people whose ulcerative colitis is in remission, this sets the stage for the return of their symptoms, known as a flare-up.” This is something I’ve experienced and heard from talking to fellow chronic illness sufferers. Lack of quality sleep and environmental stressors have often caused a revival of symptoms which can be a slippery slope to a full-on flare.

Anxiety definition (from Merriam-Webster):
an abnormal and overwhelming sense of apprehension and fear often marked by physical signs (such as tension, sweating, and increased pulse rate), by doubt concerning the reality and nature of the threat, and by self-doubt about one’s capacity to cope with it.

Stress definition (from Merriam-Webster):
constraining force or influence: such a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation
Anxiety = Fear

When speaking about Generalized Anxiety Disorder it is often associated with people who have irrational fears or worry for no reason. When talking about sufferers from chronic illness, often the anxiety is derived from perceived AND real fears. From my experience, my anxiety stems from a fear of a past trauma reoccurring. Fear of pain, a flare-up, of being out with no access to bathrooms. Fear of foods and eating, procedures, fear of damage caused by long term use of medications (i.e. Remicade can cause an increase in cancer). Fear of missing work, fear that people don’t understand, fear of drug/procedure costs and benefits coverage. This can be scary stuff and can plague your thoughts even when in remission.

From diagnosis to remission the fear still exists, it just changes in size and scope. A newly diagnosed patient can go through stages of grieving and without having the tools to manage the illness it can be very scary. Fast forward to remission, chronic illness has many layers and can be unpredictable. No matter how much you’ve done to manage your illness, there is still a possibility you can have a relapse. The feeling of helplessness can trigger depression, but on the flip-side depression can slow recovery. This begets a vicious cycle which can be hard to get under control.

Coping Physically and Mentally

Patients must cope with not just the disease itself but the mental health side effects of it. While I believe I’ve received excellent care from my Gastroenterologist, he deals with only clinical IBD symptoms so often the mental health aspect of the disease gets overlooked. It is important to bring up your emotional health to your doctor when suffering from a chronic illness despite the perceived stigma. Having that aspect under control could potentially help with physical symptoms. Anxiety and chronic illness can be a chicken and egg scenario where consideration must be given to both to have a holistic treatment plan.

Strategies for Coping With Anxiety:

Find your support: whether that be a close friend, family member, a fellow patient, or support group like Lyfebulb, knowing you aren’t in this alone makes a world of difference.

Don’t assume the worst: challenge those negative thoughts! Remember that you have survived thus far, and all those experiences make you stronger.

Try yoga, meditation, or deep-breathing:  Research has shown this to be an effective complementary therapy for patients with IBD.

Seek counseling – an impartial third party can help instill coping techniques

SOURCES: [Sharma P, Poojary G, Dwivedi SN, Deepak KK. Effect of Yoga-Based Intervention in Patients with Inflammatory Bowel Disease. Int J Yoga Therap. 2015;25(1):101-12. doi: 10.17761/1531-2054-25.1.101. ]
Cannabis is an increasingly popular therapy for IBD with cannabidiol (CBD) showing promise as an anti-inflammatory and tetrahydrocannabinol (THC) as a pain reducer and sleep-aid. [Ahmed W, Katz S. Therapeutic Use of Cannabis in Inflammatory Bowel Disease. Gastroenterol Hepatol (N Y). 2016;12(11):668-679.]

– Krystal Laferriere, Lyfebulb Ambassador (Instagram @xtra_ordinary_girl )

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.

rebecca-babcock-ibd-crohns

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.

rebecca-babcock-life-ibd-crohns

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

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.

Lyfestories: Rebekah’s Journey with Ulcerative Colitis (IBD)

I was diagnosed in 2009 with Ulcerative Colitis, I literally had no idea what this disease was, or how it would have such a huge impact on my life. After about a year and a half of trying every medication to try and control the flare up I was having, an extremely kind doctor suggested for me to have this life changing operation, to remove my bowel and replace it with an Ileostomy. He promised me I’d wake up symptom free and he was not wrong.

To this day, he is my hero, this amazing person who didn’t even know who I was, saved my life and gave me my life back and to this day I can’t thank him enough for that. I went from being in and out of hospital every other week, going to the toilet 20+ times, not being able to hold a job down to being this whole new independent person that could leave the house without worrying I was going to have an accident! I even got myself a job and I saved for a house.  I was also told I’d never be able to have kids and in 2015 I had the most precious little boy.

I created my Instagram account to raise awareness for others just like myself who have possibly been newly diagnosed, going through a flare up or have had a life changing operation and to show them that they are not alone in this battle. I’ve also been battling a condition called pyoderma gangreosum which is an incredibly rare skin condition to have next to the Stoma site and is usually associated with crohn’s patients. Again, I didn’t even know that this existed until I was diagnosed. My goal is to raise awareness–to let people into “thebaglifeofbeck” and for them to know the good and the bad times, and it’s OK to not be OK. It just helps us separate the good days from the bad, and since I’ve had my bag, the good days outweigh the bad. We’ve got this.

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: IBD Fitness

I was diagnosed with ulcerative colitis back in 2008-2009. I’ve had this condition for almost 9 years now. Just like everyone who suffers with this disease, I felt like there was nobody to talk to. I felt incredibly embarrassed and isolated.

I had several tests but never got any positive diagnosis. Doctors would tell me, “it’s nothing, it’ll pass”, but my initial symptoms of diarrhea got worse to the point of passing blood.
Not being able to get out of bed or eat was the low point. I became depressed and anxious that nothing would change and there was no one who could tell me what was wrong. Eventually I saw a specialist who diagnosed me with ulcerative colitis
I started my long journey on prednisolone and other drugs. I now take cyclosporin and Azathioprine and haven’t looked back. Things are on the up, but everyday can present a new challenge.
A year ago I decided that I wanted to raise awareness about my condition and created a blog and Instagram account dedicated to IBD related diseases, to show people “this disease will not define you”. I started to get a few followers and likes and I was then asked to talk about my story to an amazing group called instachrons. Recently I gave a talk to a crowd about my story, something I never imagined would happen. I realized people want to know about my life and my condition and how I’ve overcome adversity and this crippling disease.
I was then asked to work for a gym clothing company, because they loved the fact that there are no excuses to achieving what you want in life. You can do it too. Just set out goals and stick to them even if it’s getting out of bed. Small wins are key to big success.
I primarily wanted to create an account about fitness and diet as the lowest point of my condition was not being able to eat or walk due to the pain I had suffered. I get out there and push myself because I know it can all change. I also cook loads of food–  which might inspire you too.
For me this is just the beginning and I want to continue to raise awareness for IBD and to one day help find a cure
I’m promoting the fact that I want people to love the skin they are in and to love this condition.
I’ve created a fitness app, and have been working hard on my fitness. I have been asked to work with companies and fitness brands, showing  it doesn’t matter what your background is, you can do it. Having a chronic disease  makes me unique and gives me a chance to change the world– and this is exactly what I plan on doing.

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.

Lyfebulb Partners with UnitedHealth Group to Support Patient-Driven Innovations for People with Inflammatory Bowel Disease

NEW YORK, Jan. 17, 2018 (GLOBE NEWSWIRE) — Lyfebulb, a chronic disease-focused, patient-empowerment platform that connects patients, industry and investors to support user-driven innovation, is partnering with UnitedHealth Group (NYSE:UNH) to launch an innovation challenge featuring new businesses and products aimed at treating inflammatory bowel disease (IBD).

According to the Centers of Disease Control and Prevention, up to 1.3 million people in the United States are affected by IBD, which includes Crohn’s disease (CD) and ulcerative colitis (UC). Lyfebulb and UnitedHealth Group will help raise awareness for the conditions and stimulate user-driven innovation. By linking entrepreneurs with representatives from UnitedHealth Group and Lyfebulb, the partnership will spotlight the entrepreneurs’ efforts and ideas, and provide professional discussion, direction and inspiration.

The innovation challenge, to take place in the spring and summer of 2018, will be open to entrepreneurs living with IBD, or who have family members living with IBD, who have founded a company to develop an innovative idea for better management of IBD using pharmaceuticals, biotechnology, medical devices or consumer products. Eligibility criteria and official rules will be announced by Lyfebulb in April. UnitedHealth Group will host an innovation event in July for 10 finalists. A panel of judges will award cash prizes to three winners, to be used for their company’s further development of the winning innovations.

“Patients living with chronic disease and caregivers caring for someone with chronic disease understand the many challenges they face and are often in the best position to offer tangible solutions,” said Deneen Vojta, M.D., executive vice president, Research & Development, UnitedHealth Group. “UnitedHealth Group’s partnership with Lyfebulb will help place the patient at the center of early-stage innovation, thus providing us a unique opportunity to learn from and be inspired by patient-entrepreneurs.”

“This partnership with UnitedHealth Group in IBD means a tremendous amount to Lyfebulb in our efforts to enhance patient-driven innovation,” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb. “Continuing to build on the concept of patient entrepreneurs and partnering with leaders across health care are key components to fulfilling our mission to improve the quality of life of people living with chronic disease.”

Press Contact for Lyfebulb:
Karin Hehenberger, MD, PhD, CEO Lyfebulb, phone: 917-575-0210 email: karin@lyfebulb.com

About Lyfebulb
Lyfebulb is a chronic disease focused, patient empowerment platform that connects patients, Industry (manufacturers and payers) and investors to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in Diabetes, the company has expanded disease states covered into Cancer and IBD.

See www.lyfebulb.com, Facebook, Twitter, Instagram, Karin Hehenberger LinkedIn, and Lyfebulb LinkedIn.

About UnitedHealth Group
UnitedHealth Group (NYSE:UNH) is a diversified health and well-being company dedicated to helping people live healthier lives and helping make the health system work better for everyone. UnitedHealth Group offers a broad spectrum of products and services through two distinct platforms: UnitedHealthcare, which provides health care coverage and benefits services; and Optum, which provides information and technology-enabled health services. For more information, visit UnitedHealth Group at www.unitedhealthgroup.com or follow @UnitedHealthGrp on Twitter.

Press Contact for UnitedHealth Group:
Jim Merwin, Senior Director, ERD, phone: 952-936-6070, to email: james_merwin@uhg.com

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