On this page, we celebrate the life of those with IBD Crohn’s Colitis who have left their bodies and passed on. Some may have directly or indirectly contributed to the lives of those with IBD. These celebrations are brought to you by the One Great Gut Foundation. Also listed are those who made a meaningful positive impact on the lives of those with IBD Crohn’s Colitis. Please consider donating so we may continue educating the global Crohn’s Colitis community on how to Thrive with IBD. Physically, Mentally, Emotionally and Spiritually.
“I created this page to honor the bravery, strength, and courage it takes to live with IBD. My father left his body into expansion and elevation from form to matter returning to the stars and beyond. Prior to this he had severe IBS, possibly undiagnosed IBD in 1996. After his death, I bounced quickly within the five traditional stages of grief including denial, anger, bargaining, depression, and acceptance however it wasn’t until 2019 that I fully stopped grieving. If this resource can help one person gracefully process grief, I feel this is worthwhile. Personally, after training personal development, 23 years after he passed, acceptance evolved and integrated into the full-hearted belief that my Father is here with me, supporting, encouraging, even influencing my life here on earth, for the betterment. True unconditional love which I did experience when he was alive, though he did his best with the tools he had, especially considering he was a victim of the Nazi Holocaust. Having my father, and all my Ashkenazi ancestors here with me gives me massive support and, I believe, an unfair advantage at winning at life. When I was an Engineer if you would have told me this would be my mindset I’d have looked at you as if you had two heads. Today I believe this to be true. There are simply too many coincidences that can not be explained logically. Death is not the end but rather only another beginning. Wishing you the best on your healing journey.” – Joel Sprechman
Michael Seres – an entrepreneur, patient advocate, husband, and father of three, died on May 30th 202 in Orange County, California, of a sepsis infection. He was 51. Diagnosed with Crohn’s disease at the age of 12, Michael had lived through 25 surgeries by the time he became an early recipient of an intestinal transplant in 2011. He was the founder of 11Health, which he created from his hospital bed in Oxford, United Kingdom.
Aaron Swartz was a child prodigy, internet pioneer, and activist who fought the federal government for what he believed was right. He believed that more government information should be more readily accessible and was inducted posthumously into the Internet Hall of Fame. According to Rolling Stone, he was a “finicky eater” from childhood and wouldn’t eat fruits or vegetables, only bland rice, mac and cheese, and french fries. At age 12 he was diagnosed with Ulcerative Colitis that would embarrass and plague him for his entire life. He would sometimes be in writhing pain for days at a time. According to a former girlfriend, Quinn Norton, he would experience depression often triggered by his issues with UC. Swartz wrote that “When I’m feeling good, I’ll have bouts of just amazing productivity. The only problem is that these good days are followed by a week of bad ones, where I feel tired or depressed and can’t quite force myself to face the code.” On the evening of January 11, 2013, Swartz’s girlfriend, Taren Stinebrickner-Kauffman, found him dead in his Brooklyn apartment – hanging from a belt. Death by suicide. He was the eldest son of Jewish parents Susan and Robert Swartz, and brother of Noah and Ben.
Holly Marie Keith loved crafting, especially plastic canvas. One of Holly’s favorite activities was going on rides with members of the Bath American Legion Riders. Her American Legion friends were always lending support until the very end of her life here on Earth. She enjoyed going to races at the Wiscasset Speedway in Maine. Holly will always be remembered for her award-winning smile that could brighten any room. She left her body on Jan. 10, 2020 surrounded by family and friends, due to liver disease brought on by Crohn’s Disease at Mid Coast Hospital in Brunswick, Maine. She was 58 years young. She is survived by her soulmate and longtime love, John Pinkham Jr.; daughters, Brandy, Elizabeth, and her husband Drew; sons, Joe and his wife Samantha, Dusten and his wife Laura; father, John Layton and Alice Merry; and grandchildren, Zell, Emily, Scott, Joey, Eric, Charlotte, Henley. Holly also had many aunts, uncles, nieces, nephews, cousins and close friends whose love and support has kept her fighting for so long. She also leaves behind “Harley” and “Teddy,” two dogs that are missing her dearly.
“It is not length of life, but depth of life.” Ralph Waldo Emerson
Dana Marshall-Bernstein was a superhero, according to her family. With her infectious and extroverted personality, Dana touched the lives of those who met her, Marshall said. She was funny, sharp, intelligent and loved by many, which her father, Ed Bernstein, said was reflected in her large group of friends. She also projected her fun personality with a huge collection of hats — a different one for practically every occasion. When she wasn’t advocating for others with IBD she liked to snow ski, play the piano, sing, create art and, most of all, drive. Her favorite places included beaches, especially Coronado Beach in California, and the Del Mar racetrack, to bet on horse races with her dad. Her knowledge spilled over into the medical world, as she would offer advice to medical staff members carrying out procedures on her. She also was a champion for other patients and worked to help medical staff understand the importance of giving patients the feeling they had some control over their ailment. She left her body due to complications from Crohn’s Disease at the age of 28 in 2017. You can learn more about her story in the documentary film titled “Semicolon; the Adventures of an Ostomy Girl.
“We all die. The goal isn’t to live forever, the goal is to create something that will.” Chuck Palahniuk
Dr. Hindi Krinsky was an English teacher at the Hebrew Academy of the Five Towns and Rockaway High School in Lawrence New York. She died at age 32 of complications from Crohn’s disease in August 2018. Dovid Kanarfogel, Hindi’s former husband decided to honor her memory, with the help of his friend Leslie Gang, by putting books in the hands of children. Hindi’s Libraries is a nonprofit that collects children’s books and distribute them to children and families in need.
Tell your friend that in his death, a part of you dies and goes with him. Wherever he goes, you also go. He will not be alone. Jiddu Krishnamurti
Kenneth Rainin was an unstoppable entrepreneur who built his fortune founding scientific and medical product companies and who later parlayed his wealth and management expertise into many charitable causes of the nation’s leading centers for research and patient care. He founded Rainin Instrument Company, was passionate about the San Francisco Ballet. He also lived with ulcerative colitis until his passing at age 68 in 2007. He was a legendary entrepreneur with a generous giving spirit. In the IBD world he may be most well known for establishing one of the nation’s leading centers for research and patient care – The UCSF Colitis and Crohn’s Disease Center. He is survived by his daughter, Jennifer Rainin; his son, Jesse Rainin; two grandsons and a brother, Edgar Rainin. His legacy lives on in many ways including the Kenneth Rainin Foundation whose mission is to enhance the quality of life by championing the arts, promoting early childhood literacy, and supporting research to cure chronic disease.
“The song is ended, but the melody lives on” – Irving Berlin
Jessica Farr was your typical teenage girl who lived for music and singing. She taught herself how to play the keyboard and studied music at college in Lisburn and Belfast Ireland. So passionate and determined she auditioned for The X Factor and Britain’s Got Talent. She was diagnosed with Crohn’s at age 16 and left her body at age 19 in 2016. Her mother, Jacqueline Farr keeps her spirit alive by helping others and raising money for Crohn’s and Colitis awareness and research. In loving memory of Jessica, Jacqueline continues to raise her daughter’s cat named Storm and a dog named Pepsi.
“Sometimes it’s OK if the only thing you did today was breathe” – Yumi Sakugawa
Lisa Colcutt was diagnosed with Crohns Disease in 2008. She had once completed the Exe Valley Triathlon. She worked for DPT in Liaison Psych and led the IBD support group at RD&E hospital(Believed to be Royal Devon and Exeter Hospital in the United Kingdom). She was on the ASTIClite trial for stem cell transplant. According to Rachel(@bottomline_ibd on Twitter) she took on her Crohn’s stem-cell trial on with fierce courage and hope. According to Emma Tucker(@HomeEmmatucker on Twitter) she lost her battle with IBD in December 2019. She is survived by her husband Jason Colcutt. It is unclear if she had children.
“No one is actually dead until the ripples they cause in the world die away.” Terry Pratchett
Gerald Cotten was CEO of Canadian cryptocurrency exchange QuadrigaCX. At age 30 he left his body due to “complications with Crohn’s disease” while he was traveling overseas in India where he was opening an orphanage to provide a home and safe refuge for children in need. In his death, he also took the password to at least 180 million Canadian dollars ($137 million) in cryptocurrency with him. His girlfriend, Jennifer Robertson, claimed that Gerry “died suddenly” while on their honeymoon in Jaipur, according to Vanity Fair. Apparently there is controversy in his untimely passing and some claim his death may have been faked. Lawyers representing QuadrigaCX users have asked a court to exhume the CEO’s body, to confirm both its identity and the cause of death, citing “the need for certainty around the question of whether Mr. Cotten is in fact deceased”.
“To die will be an awfully big adventure” Peter Pan
Nick Wade, who had played for Wyke Wanderers, a football club in the United Kingdom, left his body at age 33 years young. According to Telegraph & Argus he died on Christmas Day, 12-25-2019, just days after having an operation for his Ulcerative Colitis. Nick, known as a “gentle giant”, collapsed the day after being discharged from St James’s University Hospital in Leeds, England. It’s reported that he collapsed at the home of his girlfriend, Charlotte Thorno, and her two young daughters. His collapse and sudden demise was surprising as his surgery was deemed a success after an eight-hour procedure on 12-19-2019. Nick was a well-loved man and was looking forward to getting married. On his Facebook profile, he stated “I have battled the demons that this debilitating disease can cause: the depression, shame, loneliness, desperate panic, embarrassment, pain, and isolation. I don’t want to hide it anymore. With the help of my family who have been so supportive, I have decided that I’m going to speak out and get the weight of the stigma off my chest; if it helps one person understand or even relate then it’s worth it. Blokes – keep talking. It isn’t sad/pathetic/silly. It’s so important. I’m accepting I’m ill and making friends with the idea. Once I accept it instead of hiding it and pretending I’m fine then I can tackle this next year head-on.”
“The Freedom Of the soul-bird. Death cannot take away” – Sri Chinmoy
Dr. Ben Johnson MD DO ND was an Integrative Oncologist and former Gastroenterologist. He was known as a progressive outside the box independent thinker. He was senior flight surgeon for the U.S. Army Reserve, and as a senior (AME) aviation medical examiner for the Federal Aviation Administration. Dr. Ben served as the Minister of Health for the Southern Cherokee Nation RFP. In addition to his medical degrees, he held a B.S. in biology and M.S. in psychology. He was the only Medical Doctor in the best selling Spiritual documentary The Secret, author of the best selling books No Ma’amograms, Healing Waters: Understanding the Science And Benefits of Alkaline Water, and co-author of The Healing Code: 6 Minutes to Heal the Source of Your Health, Success, or Relationship Issue with Dr. Alexander Loyd PhD ND after curing his own ALS(amyotrophic lateral sclerosis aka Lou Gehrig’s disease) and The Secret of Health: Breast Wisdom with Kathleen Barnes. He accompanied Joel Sprechman to his Cancer Treatments, here and here. What most people do not know about Dr. Ben is the full extent of his caring for his patients. There were many times when he provided treatments while bearing the full cost out of his own pocket, knowing that some of his patients were unable to pay him for his services. “That doesn’t matter,” he would always say. “They need my help.” And he gave it freely. As you can see from his Facebook obituary, and the letter from Chief Usti of the State of SCNRFP Southern Cherokee Nation And The Red Fire People he was an Angel for many. He is survived by his former wife, children and, grandchildren whom he loved dearly.
Baheem was a Malayan tiger living at Tucson’s Reid Park Zoo. He was 18-years old when he passed due on Jan. 31, 2020 to inflammatory bowel disease and other health-related conditions. According to Animal Care Supervisor Rebecca Edwards, ““Baheem was such a fun tiger to train and care for. He would make chuffing sounds when keepers would greet him in the morning and was always enthusiastic about special treats like bones and popsicles.” Baheem’s roars, chuffs, and water-loving antics always made him a favorite. Baheem lived longer than the medan life expectancy for his speciaes which is 16 years. He is survived by his companion tiger, Sita. Baheem and Sita have served as important ambassadors for Malayan tigers, a critically endangered species. Today, it is estimated there are fewer than 350 Malayan tigers in the wild. You can take steps to aid the survival of this species by supporting companies that use sustainably harvested palm oil, thereby preserving important tiger habitat.
Michael Modell was co-president of the Modell’s Sporting Goods chain and a philanthropist, died in May 2001 at the Memorial Sloan-Kettering Cancer Center in Manhattan. He was 48 and lived in Manhattan New York. The cause was complications from Hodgkin’s disease. He also lived with Crohn’s Disease since the age of 13. said his brother, Mitchell, the other co-president of the company for some years and now its president. He began working in his family’s stores while he was in high school. After earning a bachelor’s degree from American University in Washington and a law degree from St. John’s University School of Law in Queens, he became an executive of Modell’s Sporting Goods. In addition to his parents, William D. and Shelby, of Hewlett Harbor, N.Y., and his brother, Mitchell, of Cliffside Park, N.J., he is survived by his wife, the former Abby Marcia Grossman, whom he married in 1981; two sons, Alex and Andrew; a daughter, Ashley; and a sister, Leslie, all of Manhattan.
“It is not death that a man should fear, but he should fear never beginning to live” – Marcus Aurelius
Please consider donating so we may continue educating the global Crohn’s Colitis community on how to Thrive with IBD. Physically, Mentally, Emotionally, and Spiritually.
We do our best to report truthfully based on the information we are given. If any of the above is incorrect, or you would like to nominate someone to be listed please sign up for the free One Great Gut Newsletter and reply to the first email you will receive a few minutes after signing up.
*Note: It is arguable that removing one’s colon cures Ulcerative Colitis. We agree with Dr. Karen Zaghiyan, MD, FACS, FASCRS who stated during our interview for the Crohn’s And Colitis Summit “I think as doctors and surgeons, we have to re-evaluate what we think of as a cure”
