had exam and conference with shen..came with many questions..asked him how successful diet was for his patients..he gave it about 30 percent success (which includes anyone who gets some benefit from it..like reduced antibiotics usage,possibly ,lessoning of symptoms ..
why? he said the issues with the pouch for folks like me (pouchitis,s.i.b.o.ips)is more complex than just food we eat (sigh!!)there are a multitude of other factors and those factors vary among us..genetics,operation itself, and so on..endless.. its all about inflammation .. but he certainly felt if diet cuts down on bad bacteria which contribute to this inflammation staying on it helps..but not the magic bullet..
this time around i did not have my perfectly nice looking pouch too..some mild pouchitis near cuff he said..
he told me to continue for total two weeks on my present antibiotic i had started before i went to him..in this case tinderbox but go with 500 mg instead of 1000 mg as its what has helped in past and follow that with two weeks on canasa.. i was not overly thrilled as i thought ok then what which meant to me we just have to see where it goes..maybe he is thinking i might get back with diet to keep under control..however as an aside already after day 10 on tinderbox having frequency in morning and as it approaches evening..not a good sign for me!!!
he talked about the fecal transplant he has done on 15 of his patients..some have had complete bowel changes for the better.. bowls seemed normal..not all patients however saw that startling results.. it completely changed their bacteria flora..he said if i get c-diff again (only way drs and insurance will cover) i should set myself up for it..hmmm,its a possibility ,no quarantee! ha
however it presented to me to be quite daunting..you have to have c-diff,(which he said definitely gets rid of c-diff(thats cool ,but even then forever,for now? not long enough time yet to know on those who did it i think)
but back to original thought..so you have to line up doner who has to be tested and at this time prepare the feces yourself!!!blend and strain it for the liquid to bring to dr. to insert..yikes!!! the liquid easily inserted into anus..and get this if it does not work you attempt a second time down through the throat into stomach besides into anus...
know alleykat attempted this approach..yikes did you actually have to do the above???
asked him about my dehydration issues i probably experience when having frequent going and he did tell me that we loose a lot of salt and just drinking water not good enough or even good! he recommended i get a sport drink like gatoraid and continue sipping it..but perhaps better yet pedialyte..drink gotten in any grocery store..perscribed to infants,children oral electrolyte solution..less sugar..asked about the sugar being bad for my diet,bad bacteria he said when dehydrated that sugar as well as salt used up quickly and not harmful to goal of diet or something like that..
did ask him for a more local doctor or in my case one in l.a.no one here in santa barbara..and he did give me a recommendation of someone at cedars.. a g.i.who i hope to go to that can work in conjunction with shen in my care..really hard having someone in cleveland only when you live in calf..not a good feeling if things take a really bad turn..shen always great getting back to me in email when its urgent or important..but..
so after extensive exam,biopsies ..nothing outside of above findings..that i guess is good.. ..got some answers some good suggestions,but still faced the same old same old really..
cannot understand and have same frustration a alleykat..some things work for a time and you think ok i got it now..not a fix but a control and wham intestines start doing what it does and you just scratch your head..saying what the heck is happening hear..am i really better or just better in dealing with it?why do we get these teases like something works..we share it excited to pass the find onto other suffers and wham you not only feel let down but badly for passing on false hope???..i think in future i will of course continue to share but add cautiously optimistic..
i know no one will on site will hold my past enthusiasm against me as i think all of us know part of the nature of our issues starting with u.c etc..has always been lots of false starts ..no magic bullets...
i want to add lastly that dr. shen made it clear that the operation we had for what we had might have been one of if not the most difficult of operations and one that still holds so many mysteries..the intestines are such a major if not the heart of our well-being..
why? he said the issues with the pouch for folks like me (pouchitis,s.i.b.o.ips)is more complex than just food we eat (sigh!!)there are a multitude of other factors and those factors vary among us..genetics,operation itself, and so on..endless.. its all about inflammation .. but he certainly felt if diet cuts down on bad bacteria which contribute to this inflammation staying on it helps..but not the magic bullet..
this time around i did not have my perfectly nice looking pouch too..some mild pouchitis near cuff he said..
he told me to continue for total two weeks on my present antibiotic i had started before i went to him..in this case tinderbox but go with 500 mg instead of 1000 mg as its what has helped in past and follow that with two weeks on canasa.. i was not overly thrilled as i thought ok then what which meant to me we just have to see where it goes..maybe he is thinking i might get back with diet to keep under control..however as an aside already after day 10 on tinderbox having frequency in morning and as it approaches evening..not a good sign for me!!!
he talked about the fecal transplant he has done on 15 of his patients..some have had complete bowel changes for the better.. bowls seemed normal..not all patients however saw that startling results.. it completely changed their bacteria flora..he said if i get c-diff again (only way drs and insurance will cover) i should set myself up for it..hmmm,its a possibility ,no quarantee! ha
however it presented to me to be quite daunting..you have to have c-diff,(which he said definitely gets rid of c-diff(thats cool ,but even then forever,for now? not long enough time yet to know on those who did it i think)
but back to original thought..so you have to line up doner who has to be tested and at this time prepare the feces yourself!!!blend and strain it for the liquid to bring to dr. to insert..yikes!!! the liquid easily inserted into anus..and get this if it does not work you attempt a second time down through the throat into stomach besides into anus...
know alleykat attempted this approach..yikes did you actually have to do the above???
asked him about my dehydration issues i probably experience when having frequent going and he did tell me that we loose a lot of salt and just drinking water not good enough or even good! he recommended i get a sport drink like gatoraid and continue sipping it..but perhaps better yet pedialyte..drink gotten in any grocery store..perscribed to infants,children oral electrolyte solution..less sugar..asked about the sugar being bad for my diet,bad bacteria he said when dehydrated that sugar as well as salt used up quickly and not harmful to goal of diet or something like that..
did ask him for a more local doctor or in my case one in l.a.no one here in santa barbara..and he did give me a recommendation of someone at cedars.. a g.i.who i hope to go to that can work in conjunction with shen in my care..really hard having someone in cleveland only when you live in calf..not a good feeling if things take a really bad turn..shen always great getting back to me in email when its urgent or important..but..
so after extensive exam,biopsies ..nothing outside of above findings..that i guess is good.. ..got some answers some good suggestions,but still faced the same old same old really..
cannot understand and have same frustration a alleykat..some things work for a time and you think ok i got it now..not a fix but a control and wham intestines start doing what it does and you just scratch your head..saying what the heck is happening hear..am i really better or just better in dealing with it?why do we get these teases like something works..we share it excited to pass the find onto other suffers and wham you not only feel let down but badly for passing on false hope???..i think in future i will of course continue to share but add cautiously optimistic..
i know no one will on site will hold my past enthusiasm against me as i think all of us know part of the nature of our issues starting with u.c etc..has always been lots of false starts ..no magic bullets...
i want to add lastly that dr. shen made it clear that the operation we had for what we had might have been one of if not the most difficult of operations and one that still holds so many mysteries..the intestines are such a major if not the heart of our well-being..
