Ej.....never heard of Prevalite. Just looked it up and it says causes constipation.......so maybe you're on to something. Tell us what it does for you? I've tried all the usual Metamucil products, etc and although they do absorb some water they add bulk to my output......so more output. I need something that makes the water disappear, not just absorb it. I'm looking into constructing a mechanical evaporator/vaporizer that I can wear on my hip that would just vaporize the liquid as I output it. I can't see my lifestyle improving much until I can find a way to empty my bag hands-free while I'm doing other things. But I am curios as to how the Prevalite is working for you? Side effects?
NYT....Yeah, I hear ya on the lomotil. It might be helping me a bit in the morning, but once I get eating the sheer volume of food and the short length of bowel eliminate any help it can provide. I recently tried Tincture of Opium that my gastro at Hopkins told me would surely do the trick. Didn't make a bit of difference. So much for the "experts". I won't even get started on that topic. Sounds like you've always done the "grazing" thing, so good for you. I certainly don't mind it, but it would be nice to be able to sit down to a nice long meal either with family, friends or on a date and not have get up every 15 mintues to use the Boys Room. Maybe next life. The timing thing is strange to me too. But I've found some other holes in Carol's theories on Short Bowel Syndrome. I assume you guys know about Carol Parish's work. If not, and for anyone else reading this now or in the future here's the link to Part 2....you'll want to read the other parts as well;
Carol's work is really a life saver and I guess everyone gets a copy of her book when they wake from surgery after being short gutted. It's available free online and although parts are a tough read you'll come away with the gist of what's important. Like I said, most of what she says is gospel for us Shorties. I had a real problem with the ORS/osmolarity info because it's presented as a very specific molarity ratio.......and that didn't make any sense to me. I knew there had to be a gradient and not a single point for absorption to occur in the semi-permiable membrane. And I was right. She needs to make that more clear. I also found my custom reduced osmolarity ORS worked better for me than the standard World Health Organization ratio, and the one Carol talks to. Turns out I was right on that too, as WHO has now revised their ORS formulation to what I determined was the proper ratio of glucose and sodium. The new ratio is much more palatable than the old salt water with sugar disgusting mess of a drink. If any of what I'm talking about sounds Martian to anyone read my post reply to Tickpol in his forum topic entitled "Gut Not Yet Trained", as I discuss this in more detail there. The other thing I have a problem with in Carol's work (and bless her heart for taking the time to try to help us short gutters, really) is that since she's not short gutted she can't appreciate some of the things she says and how hard they are to do. For example, she says matter of factly, limit your drinking, drink 30 minutes after you eat and don't drink more than a couple ounces at a time. Yeah, right.........like that's gonna happen. When I came home from the hospital I had an insatiable thirst ALL THE TIME. It drove me nuts. And I CRAVED ice cold liquids. If I so much as took a sip of ice water I had to drink the hole Gatorade bottle full. I just couldn't stop. Must be what a cocaine addiction is like. And all my life I drank WITH my meals, not after. I couldn't even get the food to go down my throat without something to drink and she's telling me to only drink a half hour after I eat. So that didn't happen either. So she means well, but can't appreciate what we have to go thru. Again, not her fault, but it would have been nice to read something that said "what I'm telling you to do may be extremely hard, even impossible at first, but keep trying to get there". Maybe I'm being to hard on the gal.
But it did teach me something. The human body is a wonderful biomechanical machine. Up to a certain age (not there yet but getting close) it can repair itself, within reason. But it also adapts, and that's the key. Torque, you mentioned bodybuilding. In bodybuilding you have to force the muscles to adapt to the strain (by getting bigger). If you do bicep curls the body says "oh, that's different" and you get sore. If you do curls every 3rd or 6th day you body says "it's different again, but it's not stopping so I need to adapt to better handle this change" and your muscles grow. I'm oversimpifying, but you get my gist. So I used this adaptation to train my gut. Instead of using the proper ORS exclusively I went the other way. I drank hypotonic drinks most of the time and only used the ORS when I was getting really dehydrated. I was telling my body to get used to the hypotonics and adapt if you want to stay hydrated. Over time my hydration improved and I was getting by with almost no ORS in my diet. This shocked the dieticians and Gastros who I was dealing with. Now I'm not saying anybody should do what I did, because it probably won't work if you have any less bowel left than I do (i.e., 140cm), but we need to be smart about what's going on with our bodies and not rely solely on the medical "experts" who aren't practicing what they preach. Wow......this turned out to be a long one and my soapbox is really high. I better get to work before they fire my ass! So gotta go....but looking forward to talking to you gals. Thanks for replying