THE PATIENT WHO EDUCATES OVER 76,000 DOCTORS, NURSES AND FELLOW SUFFERERS ABOUT HIS CONDITION
After undergoing life threatening surgery, the road to recovery gave Michael a focus and an opportunity to help thousands of patients worldwide.
The average person has about five metres of small intestine inside their gut, continually digesting food and absorbing nutrients and minerals. By the age of 40, Michael Seres only had about 70cm of intestine left. He had suffered from intestinal failure, was constantly sick and had to be fed intravenously for 22 hours a day.
Michael was diagnosed with Crohn’s disease in 1972, when he was 12. Crohn’s was considered rare in those days. It is an inflammatory bowel disease (IBD) that can affect any part of the gastrointestinal tract from the mouth to colon. Symptoms include abdominal pain, persistent diarrhoea and tiredness. His teenage years were dominated by how many times he went to the toilet (usually 10 a day). In order to control the disease he was put on powerful drugs and monitored constantly. Over the years the drugs became less effective and the Crohn’s got worse. As a result Michael had to have parts of his small intestine removed. His first operation was when he was 14 and 20 operations later Michael was at the point of intestinal failure and needed intravenous feeding. The disease affected every part of his life, from work to family and everything in-between. He said, “For 18 months I was in hospital and would only see my kids on a Sunday. My daughter would stand on my IV pole and I’d push her up and down the corridor. That was the highlight of my week.”
He was told that a small bowel transplant could work. However only ten people in the country had such an operation and only five of them survived. He travelled to New York for a second opinion, but they confirmed that the only option was a transplant and to do it Michael would have to find half a million dollars. He read about a surgeon that had trained in Miami, Michael and his wife went to visit him. He said, “Within ten minutes I knew I could trust him. There were a number of risks, the body may reject the new transplant, the recovery time was about a year in hospital and odds for survival weren’t great but the chance to have a normal life again for me and my family was too big to turn away.”
In order to get to the operation stage Michael had to undergo a wealth of assessments to ensure his body was ready. “The operation came round much faster than I expected. Three months after I was told I was going on the waiting list, the phone was ringing telling me to get down to the hospital for surgery.” The operation went very well and Michael had to spend the next nine months recovering in hospital. Shortly before the operation Michael started to write a blog. Initially he wrote it to let friends and family know exactly what was going on, but as time went on more and more people started to read it. His posts documented the rise and fall of living with Crohn’s, preparing for surgery, and then day-to-day living after the operation. To date it has had 60,000 plus visitors from medical students to Crohn’s suffers and even his transplant team. He said, “Four or five people have had successful transplants after reading about the procedure on the blog and suggesting it to their doctors.” Michael was only the 11th person to have the transplant in the country. Now they have completed 31.
His first memory after surgery was waking up and feeling a stoma bag resting on his body. This small bag is used to collect the waste from the body and has to be emptied manually. Michael said, “It would constantly leak and the doctors wanted me to measure how much was coming out.” Michael had to rely on visually monitoring the bag to know when it was full, then he’d empty the contents into a plastic jug for the nurses to measure it and record the data on a chart. He thought that there must be a better way to do this. He used social media to contact other stoma bag users for their views, but the only feedback he got was ‘just get used to it’.
He didn’t want to ‘get used it’ and decided to figure out a way to create something that would solve his problem. He hacked together a device with a blackberry battery, Nintendo wii sensor and a motherboard that would beep when the bag was full. The next stage was to work out how to measure the contents to deliver data for the doctor. Once he’d done this ‘11 Health’ was born. ‘11 Health’ is Michael’s company which he set up to allow him to develop and deliver his measuring device for medical bags. The device is attached to the bag and it sends the patient an alert to their phone or mobile when the bag is full. It also records data which allows doctors to monitor patients remotely. Michael’s company is now attempting to refine the medical bag, making it more patient friendly. He says, “We’re not a cool technology company… my son says ‘we measure shit’ but there is a real need for this technology; our challenge now is how we scale it and refine the product and then get it out to more people in need.”
Michael is keen to get as much coverage for his product as possible. He is currently pushing it in the EU and US and managing a team of 12 across both continents. When he was full of despair and in great discomfort, Michael couldn’t have dreamed that years later he’d be running a company which could aid Crohn’s sufferers, delivering keynote speeches, running workshops in the White House or becoming the first patient in residence at MedicineX, the world’s biggest digital health programme. Five years post transplant, he is in uncharted waters. He has moved past ‘just surviving’ and is fully embracing life, enjoying family time and pushing a product that he truly believes in.