- Joined
- Jul 26, 2013
- Messages
- 10
Hi everybody,
I am the the caregiver for Life Is Beautiful. She is not doing so well right now and asked me to post on her behalf. She has talked to some very nice people on this forum about liquid nutrition and she feels it so heartwarming to be able to have a conversation without having to explain herself or her diseases.
She also has some very sweet and well-meaning friends that are just not able to understand why she can't eat, or eat things like soup or vitamin pills or JuicePlus or do "juicing", etc. or take something like Boost or Ensure as part of her prescribed liquid diet. Has anybody run into this problem with their friends and family and have come across a really awesome way to explain it to people? Hopefully something in the Crohn's literature that explains the process as it worsens and you are no longer able to eat (this only applies to those in that severe stage of illness).
She is not a typical Crohn's person either. She's at end-stage. She can't tolerate any solid food. Over the counter liquid supplements like Boost or Ensure have just as many dangerous consequences - we tried them. She has fistulas, abscesses, strictures, ulcers, partial obstructions, dead tissue, divertiulitis, a lot of bleeding both upper and lower GI, and the list goes on. Even the first line of elemental nutrition, like Peptamen, has resulted in scary episodes. She is untreated for the most part and has had no surgeries. This is not by choice; she has other rare conditions and is waiting to be seen at Hopkins, Vanderbilt, University of Chicago, etc, and we are taking her down to Atlanta to get this started in a few days. She has malabsorption, is severerly malnourished, is anemic, and continues to lose weight.
I see her friends try to offer helpful suggestions that might work for someone that doesn't have an advanced disease like hers, but they don't really understand why she can't eat. Neither her nor I are good at explaining the above complications or even the progressiveness of the disease as digestive enzymes get destroyed and food after food goes on the "no no list", no good bacteria is left, lactose intolerance begins, and so on and so forth.
They have offered to us things like juicing or brothy soups as a means of getting some nutrition and constantly offer Boost or Ensure or yogurt (yogurt sent her to the hospital). I see her constantly explaining herself to her friends and I was hoping to get some resources for a way to tell them succinctly but thoroughly why a person like her that is in end-stage disease would not be able to take their advice.
I wanted to put something up on her support page online that really explains this in a way that we haven't been able to do. If anybody here has written anything like this on their own and would like to share it, that would be wonderful or knows of some literature somewhere, we would very much appreciate it. I'm also looking for any scholarly or medical literature with a good explanation on a body like hers with severe malnutrition, malabsorption syndrome, cachexia, catabolic state, and the other things that go with severe untreated disease and how end-stage disease reacts.
This will also help explain why there are surgeries planned to take her intestines and stomach out and why she will be on IV nutrition and can only tolerate the most broken down elemental (Peptamen was a disaster) or TPN right now.
Thank you all so much
I am the the caregiver for Life Is Beautiful. She is not doing so well right now and asked me to post on her behalf. She has talked to some very nice people on this forum about liquid nutrition and she feels it so heartwarming to be able to have a conversation without having to explain herself or her diseases.
She also has some very sweet and well-meaning friends that are just not able to understand why she can't eat, or eat things like soup or vitamin pills or JuicePlus or do "juicing", etc. or take something like Boost or Ensure as part of her prescribed liquid diet. Has anybody run into this problem with their friends and family and have come across a really awesome way to explain it to people? Hopefully something in the Crohn's literature that explains the process as it worsens and you are no longer able to eat (this only applies to those in that severe stage of illness).
She is not a typical Crohn's person either. She's at end-stage. She can't tolerate any solid food. Over the counter liquid supplements like Boost or Ensure have just as many dangerous consequences - we tried them. She has fistulas, abscesses, strictures, ulcers, partial obstructions, dead tissue, divertiulitis, a lot of bleeding both upper and lower GI, and the list goes on. Even the first line of elemental nutrition, like Peptamen, has resulted in scary episodes. She is untreated for the most part and has had no surgeries. This is not by choice; she has other rare conditions and is waiting to be seen at Hopkins, Vanderbilt, University of Chicago, etc, and we are taking her down to Atlanta to get this started in a few days. She has malabsorption, is severerly malnourished, is anemic, and continues to lose weight.
I see her friends try to offer helpful suggestions that might work for someone that doesn't have an advanced disease like hers, but they don't really understand why she can't eat. Neither her nor I are good at explaining the above complications or even the progressiveness of the disease as digestive enzymes get destroyed and food after food goes on the "no no list", no good bacteria is left, lactose intolerance begins, and so on and so forth.
They have offered to us things like juicing or brothy soups as a means of getting some nutrition and constantly offer Boost or Ensure or yogurt (yogurt sent her to the hospital). I see her constantly explaining herself to her friends and I was hoping to get some resources for a way to tell them succinctly but thoroughly why a person like her that is in end-stage disease would not be able to take their advice.
I wanted to put something up on her support page online that really explains this in a way that we haven't been able to do. If anybody here has written anything like this on their own and would like to share it, that would be wonderful or knows of some literature somewhere, we would very much appreciate it. I'm also looking for any scholarly or medical literature with a good explanation on a body like hers with severe malnutrition, malabsorption syndrome, cachexia, catabolic state, and the other things that go with severe untreated disease and how end-stage disease reacts.
This will also help explain why there are surgeries planned to take her intestines and stomach out and why she will be on IV nutrition and can only tolerate the most broken down elemental (Peptamen was a disaster) or TPN right now.
Thank you all so much
