think its time to start bucket list

Sorry to hear this. You've been through the list of specialists near you? I've just been told that the Mayo Clinic does online consults; maybe something like that could help?

I agree, it is important to focus on living life and not just receiving problems. Maybe a counsellor experienced with chronic diseases would be useful.

Best,
Gin

kk i am so sorry you are feeling this way but believe me i understand the mental stress of all we have gone through,not forgetting the physical..i have been there..we are stronger tun we think..but first you need to get there mentally..you need to perhaps not only get help in that department but perhaps an antidepressant as well..so mentally you can feel clear minded and finger out what to do next..then
,thinking maybe you should come to usa(i know thats extreme)cleveland clinic in cleveland ohio is one of the places for the most difficult cases..i am not sure if you can have a tel. conference but perhaps you can to discuss problem before making such a trip....dr.bo shen g.i is the j pouch king and the surgeons are top of the heap..they work together on problems there as teams..people come from all over the world to see them..do not give up yet..just need to rest and gather yourself together..speaking of which besides counseling for your chronic problem and maybe getting something to help your state of mind you try to do some things that give you pleasure,get a lot of rest,eat well...types of food we take in especially with pouches does matter..maybe see a nutritionist

okay throwing a lot at you for someone that sounds depressed get mental health in order first and follow up with the rest..

Your location is in Georgia and I'm assuming U.S.A. and that would see to be close enough to the Mayo Clinic in Florida. Please contact them for an appointment with an IBD specialist and surgical consult. There is a member on this board that has had many surgeries. If he doesn't respond to this I am a Facebook friend of his and I will find out information so you can PM with him. Hope is not lost.

My local GI sent me to Mayo in Rochester and said I needed an IBD specialist when he could not get my chronic cuffitis/UC under control. Local GI said he was a generalist and treated the entire system and when things don't respond to what he knows he refers patients to specialists. That is what you need a specialist. Things have not gone according to norm and they don't know what to do so it is time to see people that do know what to do. The Mayo Clinic in Rochester is ranked #1, Cleveland Clinic in Cleveland is ranked #2 and both have hospitals in Florida which would be closer for you to get to for care - there are great choices out there.

I know how you feel. You go for an appt. they order a test in a few weeks, they you have to wait a few weeks for the results, then they order another etc. At Mayo and CC they get you in and out in several days. They do all the tests, have the results and meet with you to discuss options for taking care of your problems .

I hope you will try one more set of doctors.

Thanks so much for the replies. not even words to express how much it means to me. T E I love the quote at the end... I am now just looking at post. even doing that is a struggle right now. God has sent me an angel(nurse)through husband's wk. now I say angel b/c I have talked to many over the yrs. she is the first one in last probably 10yrs. that has actually helped/not just me doing a lot more talking what only adds stress. GI doctor last saw is very thourough/seemed to listen/really care. understands that flesh can not be seen lying down. had poopagram done yrs. ago/told readings of it not significant. so why was it ordered. I might not have a lot of book knowledge but common sense would be that if that is what the test shows/where I have the problem. why not?? I saw GI Dr. John Cangemi mayo/Jacksonville. not sure if he is an IBD specialist. ulcer right inside/canasa given/ phsycial therapy /did it/worked to get me back in line but no help to bowels. therpst felt it is mechanical/same words GI just said few wks. ago. SORRY I am not going to go through for spelling/too exhausted/hope one can understand me. suppose to have GI scope me next wk but thinking if he thinks it is going to end up surgery/surgeon will probably want to scope. so stressful to have a time limit. also dealing w/rash/pain/not shingles/experienced off/on for four yrs. seems to get worse/stress/cold. God bless all of you

not sure why one thought I am not in USA. I am in GA. Maybe I typed something/not sure/end shows GA.

not sure what happen to my post. not surprised. TE any more you can do would be appreciated. think you said person is at mayo/Jacksonville. don't think he posted. I am seeing a counselor for chronic disease

I will contact the j-poucher and ask him to PM you. I think he's a member here too. Sorry I didn't see your posts until tonight. I was at my daughter's 900 miles away and then flying back home and etc.

Hang on..

Hey kk, check your messages.

Chuckus/saw where you told me to check private message. can not get on it. not sure why but does not surprise me... will let me post/not look at message. went to new like explained. can you email me instead? THANKS!!!!!!!!

KK,

I can email you..........email addy?

You should be able to get your PM's via

Top Left corner it says "go".........then look for "personal zone"..........then look for "private messaging"

imagine that! my info works to reply to your message but didn't let me go to check my private messages. go figure. once I did it but not when trying again. sorry. email kkgerken@bellsouth.net