“I recently found this podcast and added it to my show list. I went back and started listening from the beginning and I am now on episode 15. I appreciate the unscripted real conversations shared with listeners each week … that delve into the experiences of the hosts as they live with IBD, specifically UC. I have found that I can relate in many ways, and living with CD myself, I’ve also experienced many of the emotions that come with the uncertainty of the disease, it’s treatments, invisibility to others, and the daily symptoms endured over years. I was decades before being diagnosed, and had already, long before, had a small bowel resection, and two other bowel surgeries due to strictures and blockages. One of the episodes discusses the sometimes difficult path to diagnosis, especially for women. It’s very frustrating. And for one of the more recent episodes I’ve listened to, I would like to offer some additional thoughts. The hosts discussed a conference they had been at, and were very informative in sharing some of what they had learned there. They then mentioned how some people living with IBD have expressed wanting to treat their disease “naturally“. And added, that any inflammation in the body was not natural and so therefore, despite concerns with some medications and treatments, they should be used to combat the inflammation. I just want to point out that this choice, to take medical treatments, and specifically drug treatments, infusions, steroids, Biologics, etc., is not always an easy or straightforward choice. Many people living with these diseases also have complex medical histories, that can make the possible side effects of these UC and CD drug treatments quite scary. And although statistically, side effects occur at low rates, they still occur. So it is very difficult for some to choose to treat their CD with these drugs and also face the possibility of ending up dying of Lymphoma. Maybe alternatively, they could have lived many years with the CD. This may be an extreme example, but it’s possible when dealing with the array of IBD drug treatments being used today. Those with history of cancer have a very real higher risk for cancer side effects. When you look closely at the drug treatments, they all have a long list of possible side effects, not to mention the need for many people to switch from one to the next, due to their ineffectiveness over time. Yes, treatment is needed. That is clear. But it is not always cut and dry for people living with this mess that is IBD. So, those looking for “natural” ways to help may not be in denial, or wearing “rose coloured glasses”… they may actually be grasping for anything they can do that feels safe. Right or wrong. It can be very hard.
One last thing… I had hoped for more nutritional guidance, ideas, sharing of info on how to improve absorption of nutrients when eating foods, and living with IBD. Important or helpful Supplements etc. And perhaps discussions addressing some of the anti- inflammatory food thoughts out there right now. Like… are things like Manuka Honey, a daily shot of EVOO, ground Chia and Flax, Avocado, Collagen powders, etc. really any good? Do they help the gut at all? Are they worth integrating? What is the historical or cultural history of these foods in daily diets? What evidence is there supporting them? Or not?
I am very grateful for your honest and personal sharings through this podcast, but I guess I am also hoping for your expertise to show itself more within your episodes.”
ElemEducator via Apple Podcasts ·
Canada ·
03/19/23