Arriving to the college dorms sick and full of anxiety was not the best way to start my new journey into college but that’s where I was at. My Crohn’s disease was the worst it had ever been when I started college in 2012 at Cal State Fullerton but do you think I let that stop me? No way! College, schooling, getting an education is so important and I would like to share with you how I survived it and ways that made it easier for me to feel more comfortable.

I pulled up on campus with my car packed and ready to find my dorm, and my first concern was, where’s the bathroom? That was usually the main thing I thought about all day…every day. If you have read my past blogs I got my ostomy later in school so just to remind you I did not have my ileostomy yet. So, my day consisted of walking through campus and learning where all the restrooms were. After learning about the disability program when signing up for college I registered right away, and I never regretted it. I advise you to do the same because Crohn’s or UC or any chronic illness is a disability and the college will accommodate you as they should. I made sure to let all my teachers know my situation by introducing myself in person and through email. I had special privileges of leaving the classroom whenever and however long I needed to with no questions asked. As well as getting a note taker for days I had to miss class, and if I was absent I wasn’t penalized. These kinds of things really mattered to me because I did not think it was fair for me to lose points because I was home in bed sick from a flare, or from a bad day with Crohn’s. Do not feel embarrassed signing up for disability or for communicating with your teachers. They will understand and if they don’t, simply have the disability advisor take care of it.

First Year 2012
First Year 2012

After my surgery in 2013 many things turned around for me. I gained 50 pounds and I no longer was rushing to the restroom as often and now I could enjoy school and get out of bed. Throughout my years in college I did have several surgeries missing weeks at a time, but I still stuck with school. I had to take one semester off, but I did finish in 5 years. I advise those ostomates out there living away from home, on campus, or even at home, always have supplies with you when going to school. Then you are fully prepared for a possible leak and prevent any problems. I remember one day in class I had a leak and I had to up and leave. I remember the teacher glaring at me and I felt so rude for leaving but there was nothing else I could do. I ended up emailing him later that day to tell him I had a medical emergency, but I never really think he understood.

Graduation 2017
Graduation 2017

There will be a lot of people in your life who don’t always understand what you are going through. Some may be your peers, you teachers, managers at work, family, or close friends. It’s how you adapt and develop a sense of understanding that not everyone will accommodate or understand your struggles and how you go about overcoming them in your own ways. I am so proud of graduating college with this disease and I hope you will keep going and keep up the good work. It is doable to finish a 2, 4 or however many year university you choose to go to. You just have to believe you can do it and that will be your motivation to succeed.

Kristen Furey - Patient Champion
Kristen Furey
Patient Champion

Hi I’m Nathan and am working at 11 Health and Technologies on the social media and marketing side of the business. Our CEO Michael Seres told me two days before the meeting that I was going up to Guy’s and St Thomas’ NHS Foundation Trust for the DigitalHealth.London Accelerator presentations. It was my first proper meeting without the CEO being there, I was quite overwhelmed yet excited. Prior to this I had worked with the company at the Wound Ostomy Continence Meeting held in the beautiful city of Montreal this past June.charles-4
I met Charles Spicer, our Chairman, at Westminster station and we walked to St Thomas’ while chatting about general life and each of our responsibilities at 11 Health.
We were the first at the meeting so other companies starting congregating around us. Charles and I had multiple conversations mainly about our ostom-i™ Alert Sensor, explaining the benefit around it reducing readmissions and preventing dehydration.

We started to set up the pop-up banner and place teddy bears, pens and leaflets on the stand we were given. Charles walked around to get an idea of the different companies and where we stood in comparison. Once all the doctors and nurses started congregating in the meeting room where we were placed both Charles are I started explaining how our device works. I was mainly speaking about how it is used and the benefits of the device, however more people were interested in the fact I am Michael’s son and therefore wanted to hear about his story and the idea that 11 Health is a patient lead company.
We both managed to network and Charles made some very interesting contacts to help in the future.
Overall I would say the meeting was very useful. I believe if the meeting was longer more people would have been interested in the company as a whole and we would have had a more detailed chance to chat but it was a great first meeting for me at 11 Health.

It has become a true passion of mine to share my story. Not just to anyone that is willing to listen, but specifically to those that have an opportunity to make a difference in the lives of other patients. Whether it be clinicians, surgeons, nurses, medical students, physicians, or even other patients- my goal in sharing my journey is to help others.

It has become a true passion of mine to share my story.

Sharing about my struggle through multiple misdiagnosis.
Expressing the struggles I faced through multiple misdiagnosis.

Today, this special group of life changers were the nurses of Scripps Health. Nurses from multiple Scripps Hospital locations join together quarterly, to learn about how to better care for patients with various wounds and/or an ostomy. This course is put on by Scripps’ amazing team of Wound Ostomy and Continence Nurses (WOCN’s), and it is such a privilege to present alongside such a dedicated team. After the class reviews the “basics” of ostomy care: what is an ostomy, the different types of ostomies (ileostomy, urostomy, colostomy, etc.), ostomy pouches and pouching techniques, the do’s and don’ts, possible parastomal skin complications, and how to change/empty an ostomy pouch; the class is then introduced to me.

During my presentation I share significant moments in my life; from the start of my symptoms, my struggle through misdiagnoses, my final diagnosis of Crohn’s Disease, my 8-month hospital stay, and of course my ostomy surgery. I really emphasize what life is like with a stoma, the positive aspects of my life because of my ostomy surgery, how nurses can better support their ostomy patients, resources and tools to provide to their patients, as well as answering any questions they may have. I am always very honest and extremely open, even with the most intimate details of my life- because the reality is, having ostomy surgery is a very intimate thing. Because of this, not everyone likes to share; which is another reason why I do- so that hopefully, one day, less and less people living with an ostomy are silenced by the stigma.

-because the reality is, having ostomy surgery is a very intimate thing.

Sharing about my passion to raise awareness for other ostomy patients, like myself.
Sharing about my passion of raising awareness for ostomy patients.

After every one of these courses in which I have shared my story, I am encouraged not only by the WOCN’s who arrange the class, but also by the nurses attending. “It is a breath of fresh air to hear from a patient”, one nurse told me. Providing insight into positive patient perspective, allows nurses’ perspective and approach towards ostomy patients to be changed as well. It is an incredible opportunity to influence and encourage these nurses, and to remind them to approach ostomy patients with a little more compassion and patience. But most of all, it is motivating to continue to raise awareness on behalf of ostomy patients, to promote life for the better because of ostomy surgery, and continue my passion of sharing my story in the effort to change lives.

Providing insight into positive patient perspective, allows nurses’ perspective and approach towards ostomy patients to be changed as well.