Posted 9/23/2013 12:56 AM (GMT 0)
how do you really know you have short bowel syndrome. Just because you think you are outputting a lot surely doesn't mean you have short bowel syndrome. Short bowel symptoms are more so categorized by clinical dehydration and clinical malnutrition.
outputting 1Liter is really not that much, especially when you aren't doing a whole lot to control it. And "living on loperamide" really is not that bad.
I lived for 18months on a clinically classified extremely high output loop ileostomy. Basically the ileo was way high up in my small intestine while my malfunctioning jpouch was diverted. I was lucky if despite all my managing techniques.. I output less than 1.5 liter a day. But it was manageable. I worked with an IBD GI doctor who specialized in nutrition issues. I LIVED (not just survived) for 18months that way. She put me on a plan that was basically an "anti-dumping" plan. Its a diet they use for people after gastric bypass surgery.
In addition to 8 immodium a day (which is truly a harmless drug and I have NEVER heard of it stifling hunger or urination or making one groggy- I suspect your hunger is stifled because you are dehydrated and you are not peeing because you are dehydrated and you are groggy because you are dehydrated), tincture of opium, and nexium,.. all drugs to slow down the output, here's a few things I had to do.
put a huge tablespoon of benefiber on something I was eating at every meal
take the loperamide 30 minutes Before eating and two before bed
eat 5 or 6 small meals a day. not 3 normal size ones
avoid sugar entirely
try not to drink when eating
only liquids allowed were true WHO electroylyte beverages. nothing else. Never ever plain water
must drink minumun of 2.5 liters of WHO drink every single day. more if active.
don't chug liquids, sip all day
no hot liquids - so no soup, no coffee, no tea
no processed foods
no greasy foods like french fries
focus on protein at each and every meal
focus on bulking foods at each and every meal - rice, oatmeal, potato
other things that you need to be aware of .. is that if you don't eat.... you will have more liquid output. So you need to eat.
And if loperamide isn't doing it for you, try lomotil. For some lomotil makes them very loopy though.
And by doing all of this I was able to LIVE with my clinically classified ridiculously high loop ileostomy.. so much that I ran three half marathons with it.
So maybe try changing your mindset and commit to trying some things that are known to slow down ileo output. Many many people with loop ileostomies "live on immodium" and output 1L a day.
But if you truly feel you are that poorly, I would suggest going to the ER, getting bloodwork done to see if you are really dehdrated, and if so, get some IV fluids.
good luck