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

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!

Pinup Model

Photo by Autumn Luciano

First of all, let me say what an honor it is to speak on behalf of all of my hardcore femmes with IBD out there. When I had my first surgery, I couldn’t stand the thought that anyone could understand what I was experiencing. I felt very isolated. I grew resentful of anyone who claimed to understand my position in life. I owe a great debt to supportive women in the IBD community, for it is through them that my resentment passed and became acceptance. For anyone struggling with these feelings, know that you are not alone.

I was diagnosed with Ulcerative Colitis in January of 2007. At 17, I had absolutely no way of comprehending what that meant at the time. Looking back, I envy my own naïveté at the time. In many ways, I think it saved me a great deal of emotional agony. It wasn’t until after my first surgery in 2011 that I began to understand that Colitis was a very destructive, very permanent diagnosis. I thought I knew what “tired” meant. I thought I knew what dying felt like, prior to my first surgery.

With four years of flare-ups under my belt, I was no longer a candidate for Remicade. My lymph nodes were swelling, and a major concern was Lymphoma. Imuran, steroids and various other medicines I can’t recall, were also no longer options. Immunodepressed and exhausted, I was 22 and living with a houseful of my closest friends. After several trips to the ER, I was greeted by a surgeon who coldly explained that I could either have surgery or die within the next few days. She left the room after explaining that I would “Never feel normal again.” And that I would have to get used to it, which would be hard for a “Pretty girl.”

Let’s be real. I was far from feeling like a pretty girl. I was on steroids for senior prom, and my boyfriend at the time (now husband) had to nair my back so I didn’t look like a chipmunk. I had bloated until my skin hurt, broke out into acne hell, and now I was expelling blood at a rate that was both horrifying and fascinating to my doctors. I was already pretty used to not being a pretty girl. I was the girl who cried watching the Olympic gymnasts because they could move.

Pinup 2Photo by Autumn Luciano

Three surgeries, a surgeon change, failed j-pouch, two ostomies and an astronomical amount of pain drugs later, I came out on the other side. I do mean that literally. I had lost 40 pounds and weighed a mere 90 pounds soaking wet, fully clothed. You could count every bone in my body, and the surgeries had ravaged my once adorable tummy. I didn’t just have a thigh gap, it was the Grand Canyon. My hair had fallen out from lack of nutrition, and I could barely walk to the bathroom, only feet from my bed. My skin was sallow and pale, my body was limp and fragile. But I was alive.

Being pretty was the last thing on my mind, I felt like I had been thrown into battle without armor. You didn’t make it out pretty, much less alive, without armor. But I did.

 

Being who I am, with some authority issues, being told what I couldn’t do was a challenge. After waking up every day for a year thinking you might die, nothing seems beyond your reach. So I started to play again. I ran, I worked out three hours a day and started to kick box. I taught dance at a summer camp. I got married. I started killing it with my dream job. I had a normal life.

Pinup 3Photo by Steven Jon Horner

It wasn’t just good enough to have a normal life. (Even though that was all I begged for all through my surgeries. Just a chance to be normal.) I wanted so much more, being finally capable, three years later. Looking at my body, and knowing that it hadn’t really been mine for nearly 10 years, I wanted ownership of it again. I had eaten well, I had trained it, groomed my muscles and rewarded years of struggle with a strong and healthy body.

Pinup was an unknown universe to me at the time. I had grown up with a love of old things, partially raised by my grandparents. It was well known that I enjoyed dressing in vintage clothing, and I had begun experimenting with my hair and makeup. I was starting to feel like myself again. Blow drying wasn’t exhausting. Getting ready was fun again, not a daunting tedium.

I was invited by a high school friend of my husband’s to a Retro night/Pinup competition at a local bar in the winter of 2013. I was prim, in a vintage 40s silk dress, with modest and frazzled victory rolls. I watched the girls (who were all so perfect in every way) compete, and I knew I was so in love with their culture. Everything about what they were saying and doing spoke to my core. After the competition, the musicians began to play and I noted that nobody was dancing. Since my health had been regained, dancing had become one of my very favorite things. I walked to the table to girls and leaned in over the shoulder of the dainty pin up who had won. “You know, everybody here will dance if you do.” I said, and we launched the dance floor. There I was. The very first night I had been able to do everything the doctors told me I would never do again. Dancing merrily and embarrassing the heck out of my introverted husband.

It snowballed from there. I didn’t know then that the winner that night would become one of my best friends, Ada Vice. Or that Gabbey Music, joined at her hip, would fold me lovingly into the world of Pinup. With the help of those two, and the lovely Alfie Jean, I had begun practicing the art of vintage beauty. It wasn’t until a year later that I would realize I had not only reclaimed my life, but all of the things fate stood to take from me before I ever knew I wanted them.

Pinup 4Photo by Autumn Luciano

My body has become such a beautiful thing to me. Not because it seems to fit the societal standard, I feel very much that I won the genetic lottery there. I feel that way because it has carried me through some of the most terrible and devastating things a human can live through. With more resilience that I had ever given it credit for previously, it stretched, and it shrank. It is beautiful because it is mine. Scarred, tired, radiant, strong, and mine. It is through pinup that I realized this, and I continue to model for me. For the girl who dreamed of a normal life, and got so much more.

xoxo,

Stella Swoon

Originally published on  http://www.girlswithguts.org/2016/01/14/your-stories-stella-swoon-pinup-model/

 

Girls with Guts, The Power of a Sisterhood

When we started Girls With Guts almost 4 years ago (wow!), we wanted to share stories here on this blog about empowerment. Right from the beginning we knew the power of shared experiences and connecting with other people who can related to you. It wasn’t until our first retreat in 2013 that the idea of a “sisterhood” became a common phrase when used in relation to Girls With Guts. The best part about this term being used in conjunction with GWG is that we (the board) didn’t associate that term with ourselves, but it was you, our clients who started referring to yourselves as a sisterhood.

I consulted a lot of sources on the meaning of a sisterhood for this post and this is what I found:

Merriam-Webster defines a sisterhood this way:

1a :  the state of being a sister  bsisterly relationship

2:  a community or society of sisters; especially :  a society of women in a religious order

3:  the solidarity of women based on shared conditions, experiences, or concerns

When I asked my friends this is what they said:

“A collective, global community of women supporting, empowering, and backing each other up.”

“Group of women who support each other.”

“With a common thought or to attain a common goal.”

“Love, support, and honesty.”

“The Shared experience, common voice, and innate bond.”

“Love, support, understanding, non-judgmental. Open communication. Not intentionally hurting one another. Trust. Solace. Forgiveness. Acceptance.”

Wow! That is some powerful stuff! The resounding commonality is that a sisterhood is a support network of women working together. “A solidarity of women based on shared conditions, experiences and concerns.” That sentence alone could practically be our mission statement. Girls With Guts is based in the idea of supporting each other, sharing experiences, loving one another, and most importantly empowering each other through our diseases. The foundation of what we were built on is that women have a different journey than men do when it comes to IBD (and life in general). Women are taught from a young age to fight against each other as opposed to supporting each other and that is something that we are working adamantly to change. But we need your help! I encourage you all to look at your interactions with the women in your life. All of the women in your life, not just your IBD friends, and consider if you are building them up and if they are doing the same for you in return. It’s no secret that I am a modern day feminist and believe strongly in the power of a sisterhood. Girls With Guts would not have gotten this far if it wasn’t for the sisterhood of my friends and family, as well as our wonderful clients who created the sisterhood we have here. Girls With Guts belongs to you, it is yours. It is your gift and responsibility to make sure that it stays a supportive and nurturing space.

For me, sisterhood is beautiful thing because we create it and therefore we control what it looks like. I am apart of a few sisterhoods that are supportive, encouraging and full of love. In the end, I know that a sisterhood is what I make of it, what I put in is what I get out and all of that jazz. It is an entity based in honesty, it’s free of judgement and negativity because that is the energy that I put into it. Much like most of life, and Girls With Guts in general, it is your journey and you will get out what you put in. This not only encourages us to take care of ourselves but also one another. In a sisterhood, we are also responsible for our sisters.

I’d love for you to write in the comments what a sisterhood means to you and why it is powerful.

Originally published http://www.girlswithguts.org/2016/02/17/the-power-of-a-sisterhood/

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