In Ehlers Danlos syndrome 3, is it usual that tests
Divide the total food into 10 equal portions.
Hello and thank you for being at 'Ask A Doctor' forum dear,
Firstly I am sorry to hear about the rare condition you are suffering from.
Secondly hats off to your confidence and will.
Appreciating your strong will from the bottom of my heart.
Functional bowel incapacitation is seen in patients with Ehlers Danlos 3. Though this is still a syndrome on which not much literature is there, dysfunction related to stomach and gut is a part of this disease.
Now let's assume a condition when you are feeding a patient giving her all nutrients amino acid but his gut is not accepting it or absorbing it. In that condition despite giving enteral feed or oral feed the patient won't be able to get enough calories as most of the nutrients would be excreted instead of being absorbed and as calorie deficiency is there severe and drastic weight loss would be there.
Longtime enteral feeding should never be the initial option rather I would suggest you give the oral diet a try again but this time with some difference.
Firstly calculate your maintenance calories and macronutrients you need (you can do it online on any website).
Now divide your food into 12 equal parts. I know sounds strange but just give it a try. Dividing all meals into 10 to 12 oral feeds would significantly decrease the amount of food your gut has to digest every hour and your intestine has to absorb.
Give this a try for 15 days.
You can take protein powder to supplement food protein as the powder is highly processed and is very easy to absorb. Use hydrolyzed powder. Suppose if one scoop contains 30-gram protein the divide 2 scoops into 10 feeds. So 60-gram protein in 10 feeds makes it only 6 gram in every feed which is very easy for your partially functional gut to digest.
Though it sounds a bit hectic give it a try for 15 days and let me know if you are tolerating it or not.
Hope I was helpful,
Let me know if I can assist you further.