Crohn’s and liver disease (PSC)
The doctor that brought the gift of hope
Teddi Bledsoe and her beautiful family went through several years of the agonizing roller-coaster of pediatric Crohn’s and PSC before they found the right formula of diet and medications that brought their son Colt to remission.
Teddi admits: Many times I felt despair and wondered why things seem to work for everyone else’s child and not mine. Yet ultimately answers were found and health resumed. I feel it is important to stress that so often it’s not the quick fix we hope for, and definitely not a one size fits all, but staying the course pays off.
As many parents can attest, the emotional load of worries lingers in the mind long after remission is achieved. Teddi was blessed when a coincidental meeting helped renew her trust in the power of the body to heal and thrive long term. Here is her emotional story – the gift of hope that came to visit her family farm.
A Guest post by Teddi Bledsoe
We live in a remote area of Idaho, three hours away from medical care. My husband and I manage a Seven Devils Lodge Guest Ranch and raise our three boys, juggling homeschooling and hosting amazing guests year round at the ranch. My oldest son, Colt, was diagnosed at the age of five with severe Crohns disease and shortly thereafter, with Primary Sclerosing Cholangitis (PSC), a rare liver disease that can accompany IBD. Throughout the past five years, we’ve ridden the crazy waves of flares, meds, SCD, medical ‘tourism’ (aka: Stanford Children’s, Seattle Children’s, and Cedar Sinai), and finally, a deep solid remission. It was tumultuous and heavy. But we are ever so thankful for the health he now enjoys.
Although the guest ranch hosts guests from all over the nation and the world, we are fairly small and it is not often that we host individuals that have IBD (or at least diet controlled IBD), though we often get people with a variety of alternative dietary habits due to celiac, cancer, etc. You can imagine our surprise, given the rarity of PSC, when this summer one of our guests arrived with precisely Colt’s same diagnosis (which is extremely unusual, as PSC almost always accompanies UC, not Crohns). I have never personally met someone else with PSC. This kind gentleman arrived at our small 12 person guest ranch, traveling from across the country, to vacation with his three young boys. He had requested diet accommodations in advance, but upon arrival we began discussing the reasons behind it, revealing that he and his son both had health issues that were resolved with careful dietary choices (no eggs, wheat, or yeast).
Our guest shared that he was a physician and also a person with Crohns and PSC. I nearly fainted and expressed possibly a bit too much excitement, given the gravity of the diseases. (he kindly overlooked my misplaced exuberance). After offering to answer any question I had, the following week’s stay provided insight into both the traditional medical perspective and the personal perspective of dealing with life threatening diseases.
Here, in a gigantic nutshell is his story (personal details changed for privacy):
Dr. N. was diagnosed with PSC at age 18. They discovered it after having recurrent pain in his abdomen. He had no elevated liver enzymes, which is rare in this disease. They performed a procedure to alleviate some of the problem around his bile ducts and he recovered, nearly forgetting about his condition. Fast forward 8 years and he is in residency for his medical degree. He began experiencing gastrointestinal disfunction and upon inspection, they found that he had Crohns disease, albeit fairly mild. He was put on Asacol and sent home after being told his PSC also looked like it was progressing. Over the next six months he became a dad for the first time whilst dealing with residency and having increasingly severe infections every few weeks. He described being at work, feeling fine and in the next moment having an acute attack of cholangitis, therefore needing to be given IV antibiotics in the ER. Because of these recurrent attacks he was placed on the donor list and had an increased score on the MELD scale. Within 6 months, declining as he worked, he was called at work one day and told there was a transplant for him.
Dr. N. was given a successful transplant, with a deceased match found for him that fit his blood type and body type, both indicators of his body hopefully accepting the organ. He spent ten days in the hospital and a month recovering at home before heading back to finish his residency. After receiving his new liver he began a major diet intervention, adopting a vegan lifestyle. Because liver transplants often last between ten and thirty years, and Dr. N. was rather young at the time of transplant, he is highly cognizant of the fact that there is an expiration date and the cleaner he eats and better he treats his body, the longer his current liver may serve him. He is on anti-rejection medications for the rest of his life, but suffers virtually no side effects from them. While he has experienced some hardship beyond just physical, in regard to his transplant, (he was once overlooked for a potential job due to the fact that he’d had a transplant), he lives an active life, travelling with his young sons and working as a surgeon in a non-IBD related field of medicine. He has coped with the many facets of living with a life threatening disease by employing a variety of healthy tactics: seeking therapy when needed, carefully following his doctors’ instructions, and ultimately deciding to live a full, unencumbered life. His commitment to healthy living and diet is even stronger as a father to three young boys.
As a mother, I have long feared the dreaded liver transplant option for my son. When he was first diagnosed, the medical literature gave people a ten year life sentence before either death or transplant. That would put my son at 15 years old. It was unacceptable and horrifying. When Dr. N. shared his story, laden with positive notes, I felt an acute sense of relief. Here was a medical professional who had precisely what my son has and the worst happened he had a transplant. And to see this gentleman, one would absolutely never guess he had two severe diagnoses. He lives a very active life, has a flourishing career, and positively refuses to let PSC hold him back. He has no sign of a return of the disease and deals very little with his Crohns. He has found that a very healthy diet of real foods is medicine enough for him right now. And that story gives this mama HOPE. My son is doing so very well right now weaned off of every medicine, both for Crohns and PSC. So far his PSC is not progressing and we have hope that we may never need to think about a transplant. But we also have the blessing of hearing Dr. N’s story and hanging on tight to the fact that he is an exceptional example of a survivor and a thriver!
For inquiries about the unique experience at the ranch and the special accommodations for individual dietary needs:
Seven Devils Lodge Guest Ranch and Guide Service
Council, ID 83612