ImproveCareNow Advocate


My own art of talking about IBD

The way I have felt about making time to explain (or to not explain) my IBD has changed since I was diagnosed seven years ago. Early on I felt like no one understood, and therefore I didn’t put any energy into talking about it. Unhelpful comments and ignorance were hard for me to get past. It took me a long time to realize people can’t understand what they don’t know about.


Helping to make a difference in the IBD community

My name is Erin, and my daughter Caroline was only 9-years-old when she started losing weight, stopped growing and was exhausted all the time. As she grew sicker, she could not keep up with school, play with her friends, or participate in the activities she loves most: soccer and ballet. It took us almost 18 months to arrive at a diagnosis of Crohn’s disease.


Being an advocate when I don’t feel like one

Sometimes I feel like people expect me to always act a certain way because I have Crohn’s. Maybe you’re thinking I mean people understand and expect me to always be tired or running to the bathroom. But that’s not it; it’s that I feel like they expect me to be happy, bubbly, positive – like I am when I’m advocating.


Triumph Cords

Hi everyone, my name is Natalie and I just graduated from the University of Cincinnati (UC) this August with a degree in Environmental Studies and minors in Psychology and Biology. On my own time I am a health & environmental advocate and enjoy fighting for awareness & understanding of things people may not be educated on (like Crohn’s disease, which I also have).

Thanks to the UC journalism department, I was prompted to write a short piece for a video and article I was featured in for my school. It was about overcoming adversity and making it to graduation, and I wanted to share it with you.


A blessing in disguise

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Hi there! My name is Bianca. I’m and 18-year-old college student who loves Broadway and being a patient advocate with the PAC, my Crohn's & Colitis Foundation chapter, and the National Council of Crohn’s and Colitis Leaders. I was diagnosed at 15 with ulcerative colitis and since then have absolutely fallen in love with spreading awareness about Crohn’s disease and ulcerative colitis and fostering compassion around these chronic illnesses.


NO Public Restroom – A Parent Advocacy Story

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A few years ago, I was in a retail chain store and the person in front of me at the cashier asked to use the bathroom. The cashier said, "We do not have a bathroom." So, when it was my turn to cash out I said, “You have a bathroom...you just don't let the public use it?" She answered me, “Yes.” I thought to myself that this would be a great teaching moment.


Introducing Jessi! Read her story.

In 1999, at my 2-month check-up my family learned I have Turner Syndrome. Before my 6th birthday I had ear tubes put in; tonsils and adenoids taken out; a tethered spinal cord released; my bladder and kidney tubes reconstructed, and was on daily growth hormone injections. I was regularly followed by an Endocrinologist, Urologist, Nephrologist, Allergist, Cardiologist, and the “team captain” my Pediatrician. Despite all of this, I didn’t look sick. People thought I was vibrant, brilliant, and basically a healthy, cute little Muppet.

 

I am the middle of three girls. My older sister had a prenatal stroke, resulting in right hemiplegia and seizures. My baby sister spent the first month of her life in the NICU but is very healthy now. All that is really just to say that my family has spent a lot of time in hospital waiting rooms.

 

During my 6th grade year, I missed a lot of school with complaints of pain and fatigue.  A normal check-up for my asthma ended with a “by the way, I’ve had a lot of stomach pain and some diarrhea…” This prompted a second look at my weight chart, which showed a drastic loss of 21 lbs. in less than 2 months. Blood tests showed I was severely anemic and Vitamin D deficient. And so, we added Dr. Moyer, my GI from NWPGI, to my list of specialists. A colonoscopy was ordered, then we waited to find out if my official diagnosis would be Crohn’s or ulcerative colitis (UC).

 

My family and I believe that the fact that I was on long term antibiotics for both kidney and ear infections may have contributed to the triggering of my UC. It’s also possible that my frequent doses of steroids to treat my asthma masked, or put off my UC symptoms. By my 13th birthday, I had gone from 113 lbs. to 72 lbs.; from a girl’s size 16 down to an 8/10! Several bad flares led to ER visits, hospital stays, IV’s, several rounds of steroids, and recommendations for Remicade.  For me, with compromised kidneys, and a bicuspid heart valve, (my only real health threats from Turner’s) biologic drugs like Remicade are quite scary and will only be a last resort.

 

Because of my health, my family and I decided on home schooling for 7th grade. My mom and I decided to try the Specific Carbohydrate Diet (SCD) in hopes of staying away from Remicade or other heavy drugs. I thrived doing online school, eating a SCD diet, and we began doing individual food challenge tests to identify foods I really have to avoid. We were able to slowly add back some ground corn, like gluten free corn chips, rice occasionally, and sweet potatoes (my favorite!) into my diet. My health leveled out with these adaptations and we believe the carbs helped metabolize my meds and make them work better. I feel so much better on a gluten and dairy free diet, and feel bad very quickly if I eat “wrong”. Even Portland’s famous Voodoo donuts are no longer tempting because I know what will happen if I eat one. I take my prescribed Azathioprine, Delsacol, and Allopurinol along with VSL-3 Probiotics, Iron, Vitamin D, Fish Oil, and Calcium, and have staved off the need for Remicade so far.

 

One year later, and I was back in full time public middle school. I was in my second play, walked a 5K, only missed 2 days of 8th grade due to UC, and graduated from middle school with the highest honors.

 

Jessi Erickson shares her story about living with Turner Syndrome and ulcerative colitisNow, I will be a sophomore in high school this fall. I pack my modified Paleo lunch to school every day and have a 504 medical plan that gives me clearance to leave class and access to the nearest restrooms whenever I need to go.

 

I am sensitive to stress, still on hormone therapy for Turner’s, and turn into a mean little hulk when weaning off of Prednisone. I have been able to avoid steroids for a long time now by carefully watching what I eat and not missing any meds.

 

In my spare time I write, read, sing, and practice archery, (Twitter, Tumbler, Pinterest, and Facebook too!) I want to be a writer and travel. My first stop will be Ireland! I have a big imagination, an even bigger heart (not in the enlarged, real medical sense) and am willing to help anyone I can, especially other kids who are dealing with IBD.  I want to help raise awareness that Turner’s girls have higher chances of having IBD. This is still news to many endocrinologists who diagnose Turner syndrome.


Hi, I'm Randa and this is my story.

Randa Samaha was diagnosed with ulcerative colitis at age 5I was diagnosed with ulcerative colitis (UC) at the age of 5. Or at least that’s when my doctors were finally able to figure out what had been going on for years. As a 5 year old I learned, in simple terms, that my body was “overreacting and attacking itself.”

 

 For the majority of my young life, I did not know what it was like to not be in pain. I lived with continuous pain and symptoms. I lived with urgencies and emergencies. I learned how to deal with accidents and embarrassments. I learned how to speak honestly and openly about my UC. And most importantly, I learned how to advocate for myself.

 

I believe living with UC has made me a stronger person, and for that, I am grateful. I am grateful for what it has taught me and for where it has taken me in life. Today, I am a nurse because I looked up to my health care team and I am a patient advocate because I want to empower others to recognize their strengths.

 

My wish is to help other children living with inflammatory bowel disease recognize how strong and unique they are. I wish to empower them with the tools they need to learn how to listen to their bodies and nurture their souls, allowing for healing to take place. I know from personal experience that even when everything seems chaotic and out of control, we as patients still have the power to make decisions and must resolve to hold our head high, remain positive, and live life to the fullest.


Hi, I'm Isabelle

When I was first diagnosed with Crohn’s at age 15, I had absolutely no idea what that meant. For the first three months after my diagnosis I thought the medicine I was taking would just make it go away. I can still remember the day I asked how much longer I would have to take the medicine. My doctor looked surprised and then told me most likely for the rest of my life. After that I still lived in ignorance, thinking that taking the medicine forever would keep me totally healthy. It took months of intense illness to rid me of that notion. That’s when I fell into a deep depression. Everything seemed out of control and scary, and all I knew was that the rest of my life was going to be filled with this pain.Isabelle Linguiti

 

Of course I was incredibly angry about having the disease, but what made me even angrier was that nobody ever explained to me how IBD is not curable but it can be manageable. Nobody ever told me that while I will have it for the rest of my life I wouldn’t necessarily be in this much pain or this debilitated for all of it. Nobody ever invited me to give input into my own care.

 

I am not someone who takes well to being left in the dark so I starting spending all of my time stuck in bed researching and learning everything there was to know about IBD and its treatments. I read every study I could find and started bringing my ideas to my doctors. It was so frustrating because at every turn it felt like we were in uncharted territory and they didn’t know what to do but they still weren’t turning to me for help figuring it out. My opinions about what course of treatment I should take continued to form and in time I became more assertive.

 

I pressed my doctors to allow me to get a g-tube placed, something they don’t generally use in Crohn’s patients. It was the right choice for me. Despite resistance or at least hesitance on the part of my doctors, it ended up preserving my health during many periods of acute illness. There are other examples but I just share the g-tube as an example of why the knowledge and feelings of a patient are so important to consider in the decision-making process. I knew what my body needed and I was right.

 

Obviously I’m not a doctor and I should not be unilaterally deciding on the care plan, but I know that if I had not been advocating for what I felt was right for me in my unique situation, I would not be anywhere near as healthy as I am now. Now I feel like I have a really great team-based approach with my doctors. I want everyone to have that and I don’t want anyone to have to fight as hard as I had to in order to make that happen. I don’t blame my doctors for their resistance. I think they’re great and I believe they really respect me but including a patient’s perspective in decision-making is simply not the way things are done - especially in pediatrics. In my opinion having informed patients and a collaborative relationship between patient and doctor is the best, and frankly the only road, to optimum health.


The Moment, Continued

I've spent two weeks now at Cincinnati Children's Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the "staff" table, I was hit by a quiet wave of shock. It's been over six years since my diagnosis. Over six years.One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I've changed in meaningful and (then) unimaginable ways since my diagnosis.


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