I’ve talked to many and read many more stories on here with our SBS brothers and sisters. Seems to me almost everyone of them in some form at least partially is on TPN, omegaven, gtube, ostomy bag, NG tube or something. Bottom line is seems about 80-90% are still “connected” to something even after they’ve come home from the hosp. This troubles me and makes me sad. I was the first person recorded on earth to survive with 26 cm left of small bowel of course since 1979 theres been people who survived with less. The point is, I can’t believe we havent advanced far enough yet in 30 years so that coming home from the hosp means being disconnected from everything. This saddens me for our SBS borthers and sisters. What again doesnt make much sense to me is that when I came home from the hosp i havent had to be ever connected to anything ever again. All I do is orally drink just liek somenoe would drink water or any other beverage 30 cans of osmolite a day. This has worked as my only source of food and nutrition since late 1981. Not only worked, it has made me it seems physically above average muscle wise and body fat% wise. as yo can see from my pictures I’ve posted I’m pretty big. I was able to attain that on just osmolite. Now, I’ve also never had any real food not ever…(for more detail on the exact case of mine read my profile) … seems most of the people who are still connected to one thing or another do eat some or a lot or at least a little normal food. Is this the trade off? Do you need to be connected to something to supplement what your not getting because your eating normal food? Maybe, maybe not i really dont know. Iam really just tryin to figure out why so many are out of the hosp yet still are having to be connected to something. I know I couldnt be connected to something that would def change quality of life for me in my eyes. Anyway, just something I’ve been thinking about and would like to see what anyone in the group’s thoughts were. Maybe can shed some light on the subject for me or just talk about it in general. I just reread this and it seems jumbled but my main feeling throughout this is our SBS bro and sis’ shouldnt still have to be connected to something like the things I mentioned.
