Anyone who has undergone ostomy surgery knows just how life altering it is. After having ileostomy surgery there were many things I had to adjust to, especially within the first 2 years after having my surgery. Learning the new process of my newly fashioned anatomy, I began to alter certain habits of my life to accommodate how my body functioned. I had to ask myself questions like, “How long after I eat this will I need to use the restroom?”, and over time I learned what types of foods and drinks caused my pouch to fill up more quickly. Forming new eating habits took some time, but I think what took the longest was learning how to avoid dehydration.

Forming new eating habits took some time, but I think what took the longest was learning how to avoid dehydration.

You might be thinking – “Just drink more water…it can’t be that hard?”. And you are right, drinking more wasn’t the hard part. Actually, drinking large quantities in short spans of time caused some of my biggest issues with dehydration. Allow me to clarify so there isn’t any confusion. I would drink, and drink, and drink, large amounts of fluids in a very short amount of time and my ostomy output would be out of control. I went to the Emergency Department numerous times because I could not seem to slow down my ostomy output. It took me years before I could appropriately manage my hydration, but I learned what contributed to high output levels.

It took me years before I could appropriately manage my hydration.

This is a picture of me in a Med-Tent at the Stagecoach Country Music Festival. I had become severely dehydrated during the festival weekend and needed IV fluids.
This is a picture of me in a Med-Tent at the Stagecoach Country Music Festival. I had become severely dehydrated during the festival weekend and needed IV fluids.

Some of the contributors to my increased output included sports drinks, fruit juices, soda, and even alcohol. Now this doesn’t mean I had to completely cut these items out of my diet, but there are little tricks I picked up over time. Diluting juices with water, switching to diet or sugar free drinks, and ultimately to SLOW DOWN and not guzzle my drinks down, these all help to manage my output and allow me to maintain my hydration. Hydration is important for everyone, but especially for ileostomy patients; so tune into your body’s habits, learn what effects your output, and utilize any resources available to help keep you hydrated and aware of your output.

…tune into your body’s habits, learn what effect your output, and utilize any resources available to help keep you hydrated and aware of your output.

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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.

Sharing about my struggle through multiple misdiagnosis.

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.