In her late 40’s, my wife Diane started having serious and painful digestive issues while losing weight. She was previously diagnosed with Ehlers-Danlos Syndrome (EDS), now called Hypermobile Spectrum Disorder (HSD). Over the years, we reached out to the specialists who had seen some similar cases, but no specific diagnosis was made nor were treatments proposed. As a result, she became anemic, dehydrated, and malnourished, as well as suffering a host of digestive issues including weight, muscle mass, and bone density loss. Ultimately, one Friday at work, she experienced a particularly painful and debilitating episode. When she arrived home, she looked exceptionally dehydrated and nauseated, and was unable to eat. With no hope for relief of those symptoms, and fearing organ failure, we went to the ER for a Saline IV.
While we are better now, that Friday was a turning point in this fight against those digestive issues. It was then a game of survival, and all that I could do was to care for her, while figuring out hydration and nourishment. As we continued to follow up with specialists and kept up with research and discoveries, the immediate priority was for Diane to stay alive. I scoured the internet, researched, and reached out over the phone to anyone who could have possibly helped. It was a dramatic time, and we had to figure things out fast. After much research, I figured out that she was experiencing serious sensitivity and allergic reactions to certain foods and fluids that she was consuming. Later that weekend, we started talking about what I had found, and made a significant plan to tackle it. With our new plan, she reached a point of stability within days and was able to return to work. Encouraged, we slowly started to figure things out and have done relatively well in maintaining and improving her health.
This webspace is all about Diane’s digestive journey since that weekend, our interaction with foods and fluids, what worked, what to avoid, and what we have learned so far. EDS & HSD is a complex topic, which has played a roll in her digestive issues. But this webspace is focused solely on how to navigate the world of foods and fluids in order to stay hydrated and nourished, while minimizing sensitivity and reaction of the digestive tract. We write this with sincere hopes that it will help as many people as possible, so that no one has to suffer those terrible digestive issues, let alone fight to stay alive. Please note that we are not doctors, and we have not worked in the medical field. So, be sure that you follow up with your doctors and specialists, like we do.
Note: we do not make any money, nor do we get any discounts or perks by suggesting any of the brands, apps, etc. mentioned in this webspace; our recommendations are strictly based on our experience.
Problem –
Allergy and sensitivity to foods and fluids can develop at young age, or come out of nowhere. In some cases, no one really knows when or why some patients start to experience digestive tract issues. The likelihood is that it starts during childhood, and not knowing any better, most assume that this is a normal thing. Then the dramatic changes begin, and the fight to stay alive starts. That is what happened to us. Diane had digestive tract issues since childhood; some were mild and others were difficult, but she was dealing with all of them as a normal occurrence, thinking that most people deal with the same. Then, as we get older, we realize that we are different. Especially when these issues become more severe, the body doesn’t get enough hydration and nutrition, and we start losing weight and muscle mass. Left unchecked, things can progress to extreme dehydration and malnutrition, possibly necessitating trips to the ER for a lifesaving IV. The possible outcome of this going untreated is organ failure and death. We have been fortunate to have survived this despite being right at the edge of the cliff. Looking back at that scary time, we are now determined that if we could help just one person to avoid what we went through, this work would all be worth it.
Resolution –
Nothing in this webspace is magical or out of reach; just experience-based diet management with practical adaptations and adjustments that we have developed throughout our journey. Our research and exploration, as well as trial and error, resulted in a plan of action. This plan of action is about taking the proper steps to stay hydrated and nourished. Also, this diet plan includes products and options that are available in local stores. In the end, our goal is to pass on our experience and help individuals along their journey dealing with digestive issues.
Important notes –
- If you are experiencing dehydration and/or malnutrition, don’t wait too long; go to the ER or call an ambulance. The consequences can be serious or fatal.
- It is most important to know what foods and medicines you are allergic to. Keep an EPI-Pen around and call an ambulance in case of a serious reaction. Diane had a near death experience due to an allergic reaction to steroids, with her throat swelling shut causing inability to breathe. Thankfully, the ambulance came within minutes and she was saved.
