Recent Surgery...

Just wanted to offer a suggestion that you contact the team at Palms of Pasadena Hospital in St. Petersburg Fl for an evaluation of your situation. You should contact the following person:

Susan Kay  @   (800) 336-0789

Ray

I am so sorry for this...What happened and what do you mean by 'nightmarish'?

Is it the pouch or stuff surounding the pouch? Is it ileus (the digestive system shutting down?) or something else.

Depending on what is going on you may need a different solution to the problem.

I have had numerous revisons of my valve and pouch and each one has brought with it its lot of complications and problems...Very rarely the same one twice...some were my fault (getting up and doing too much too soon, eating the wrong things too quickly, embarking on sports when I shouldn't have even been tying my shoelaces...) and others were my body's fault (not healing properly, the pouch falling off of the wall, the midline opening splitting open partially or totally, infections, twists, ileus etc) but rarely if ever did I have a surgeon do something (or not do something) that caused me problems (only  1 here in Paris and we won't get into that but I found my stoma in a very strange and uncomfortable spot that made my life a living hell for 5 years).

I discovered that things including post op recovery had changed a lot since my 1st k pouch surgery 35yrs ago and that they no longer do, act or operate like they did before...

It was very disturbing and destabalizing...

So please, what happened and how can I (if I can or if I can find someone who can) help?

Depending on what is wrong another doctor or surgeon may be able to fix it without you having to fly out to N.Y...I think that there is a Cleaveland Clinic in Fla as well and they may be able to find someone to help.

I am really sorry that this is happening to you, it just is not fair.

Sharon

bcirray....TY  ...I contacted  the bcir  center and spoke with miss kay...she  thought that along with all of the post surgical  complications that I may have  pouchitis also...I have a standing script of Flagyl, which my local doc gave me and said to use anytime I have bout of pouchitis....omg...it  helped greatly with the pouchitis, which I did not even know I had, but am still dealing with the post op surgical  complications....

skn69...sent  you a pm..thanks  for  your help and concern.. read the pm  when  you get  a chance  TY  again....

Deleted,

PMs do not seem to like me or get into my in-mail box...they float away into cyberspace...I will look in the PM section and see if I can find it.

Sharon

Sharon, you have to change your notifications in your profile in order to get an email when there is a new PM (dialog). Also, when you are logged in, the Dialogs box in the upper right will be highlighted pink if there are any active messages. However, it seems to stay highlighted even after you read the messages.

Jan

Thanks to all who have replied ...and also sent pm's.....I am in process of  having had to travel a great distance from my home to try and seek med consults/exams etc  regarding my surgical/ medical situation.

I will  post and reply to the pm 's   when I have an update.   Still dealing with a lot of pretty severe abdominal pain and the many complications of my recent surgery...Thanks  again for the messages  and the advice...I am truly very appreciative....

Thanks Jan...found it!

Boy, were there a lot of unanswered PMs! So sorry guys, I had no idea!

Sharon

Just wanted to thank those who sent pm's, in particular Sharon ( skn69 ) , whose advice and encouragement have been a tremendous help to me. And also to Jan, who has helped  so many others , and now who has helped me with info about my situation and also some tech/j-pouch website type issues....Thank you both again...I am hanging in and trying to keep up my strength and hoping for a good resolution regarding my recent surgery.  The emails/pms with the info and advice have been so beneficial to me. Once again, very appreciative of this board and all of those who contribute and share their experiences , advice and offer support to many individuals such as myself who are trying to manage and cope with what can be , often times , devastating  complications post op.    TY