I have not been here for a very long time. Let me start by saying that I am very sorry to hear of your challenges Aggie. I also have been living like it seems at least some others ( with a k pouch that has begun to leak more over the years). It has been over 18 years since my K pouch and before that I had a ileostomy for 10 years. I am almost 54. My initial surgeon that created my K Pouch passed away several years ago now it seems. I had went back in and saw the Surgeon that was working with him and as I understand it was also learning from him. Over the last 5 years that surgeon suddenly became very much distant and not acting on my needs. It was more of a disbelief that I had/have an issue that needs to be dealt with or did not want to be bothered. It is like what another member said in that all looks good in my pouch. But there are times when it will leak a lot. So much that it is though there is nothing causing any resistance at all. Then other times it seems as though I am just fine. it does not seem to matter if I have a more liquid or thicker consistency. I have never had a revision. So over the years I have gained about 10 - 20 lbs but nothing dramatic. I am now trying to find a new surgeon as there has only been one in the state I live and for reasons I am not aware of there are issues more involved with that individual and it just does not make since to set myself up for a stressful procedure with someone that is not working with me anyway. So the GI Surgeon in the Hospital/insurance group that I am in now has offered to have his colleague assist him in "doing the operation", He is a good surgeon I have no doubt but he has only worked on a k pouch twice and both with the supervision of the surgeon that was/is not only thoroughly trained but has done many of these procedures for decades. Today I got this report after I called being put off for the last few months..When I was directed to contact my primary to help refer to a qualified surgeon ( it may have to be in California or Washington...still not sure who to go to ) but the response I got from my general physician today was. " I would have Dr. "......" operate on me or any of my family. So you can imagine I feel suddenly misunderstood and also do not want to lose repertoire with my primary care doctor. I have made an appointment so I can explain to him that I am not comfortable having a revision done by someone that has only had 2 cases and admittedly in conversation has told me he does not believe this procedure is what a responsible doctor would do this day and age. "the new generation of colorectal surgeons don't do these operations for the most part." but as I mentioned I have had this for almost 20 years now and 10 years before that they had removed not only the large colon but the entire rectum as it was not in good shape..And this is true. I know that I did have issues even in my teens though being quite unaware of any of these things at that age I did not know what was going on. So I am even more stressed out than usual. I am online doing my own research and trying to read all I can on reasons for leakage and what is involved in valve revisions. And at the same time I am trying to not be shamed into allowing someone that is truly a good surgeon but not in this procedure just "make it better than it is now" I hope that members here would also understand my feeling in that this is very specialized and it is rough enough just getting the right connection with a well versed surgeon that already specializes in this surgery..and that is a proponent of it's benefits. I had to get this out and as it also has to do with what others on this thread have and may be going through I thought I would start here. I feel alone..I am alone, and when doctors and other professionals become unsupportive, impatient or even worse, just ignore you...that is what has happened for the last 5 years. And today in the present climate I am feeling the pressure. Thanks or reading. I know it was long but I have been away for some time. I really hope that in this and as it progresses it will also help others. I know there is a good resolution..just need to get the professionals to get realistic and a bit more reasonable here. Thank You.