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Over the last year or so her GI, I believe due to lack of experience and expertise in dealing with j pouches failed in being able to correctly diagnose what is ailing my sister and provide proper treatment. I spoke with Dr. Chen from the Cleveland clinic while I was at the conference and he blurted out "her GI is not a jpouch specialist, she needs to see Dr. 1, 2 or 3 at the Univeristy of Chicago Hospital" After my sister told her GI this, she blurted out Dr. 1's name and said "yes, I have only treated a couple jpouch patients, he has treated hundreds" It is my hope as well as my sisters that these GI's can correctly diagnose the problem and restore the jpouch to good health.
If anyone has had similar experiences, ideas, suggestions or words of encouragement for my sister I would appreciate it.
Thank you
Brian
keeepnitreeel wrote:So I have not written in a while ... not because I have not had anything to say. I have a few questions. So I told my story a couple months back (well maybe not even that long) ... recapping was sick around 19 yrs old had colon removed at 21 reversal three months later and tons of problems since. Been on flagyll forever and also take the max dosage of lomotil. For approximately the last six months I have not been feeling good. My bathroom trips have increased was over averages about ten and now it is minimum of 14. I cant remember the last time I had more than two hours of sleep at a time... i am dragging. My brother was in Cleveland and brought me info back. To be honest I have not taken the vitamins like I am suppose to. I finally contacted my GI and told her a five sec hx on my brother and basically told her that he informed me I should go to the University of Chicago hospitals. She spit out a name of a doctor who happens to be the chief of the "stomach" department. I have an appointment on 9-11. Guess my concerns are that I have a J-pouch and understand that several people that share on this site have had J-pouches and "lost" them. It brings tears to my eyes to say this but at this point I would almost rather be so sick than to have a dukie bag. I have had a bag twice so far and my life was less than "shit." Those that lost he bag... why? what were your symtoms? I do not even want to put those thoughts or words in the universe. I am thinking that maybe I just have another form of pouchitis and a different medication will help. This whole experience has not been enlightening or strengthing... i am so tired and sick of being sick and tired.
ps my butt and a$$whole feel like they are going to fall off. I dread going to the bathroom even though it is all I do. I know I have to look into those sites with the creams that were listed on a previous date.
