I had a BCIR since 1995 was doing well had to revise for access segment repair after my sons birth but that was expected. I started have some problems with hernias and the hole closing which i believe is called stenos but really not sure. Had my original surgery with Dr. Behrens in St Louis loved him unfortunately he retired. I went back to St Louis for the repair after my son all was good. Then I started getting the closing plus a hernia. St louis no longer did this surgery so onto Florida I went with Dr. Renke. He was good too. Unfortunately I again had closing of the stoma and called florida they said if i can find a dr where I live that will repair it to try them so I did. I live in NY found a dr. but needless to say he messed it all up and wound up back in Florida. To try to make a long story short and come to now well i again was having problems with closing and a hernia. It was very painful. So called florida again and they said if I can find a dr in NY that is willing to repair to go ahead and do it here. I found a dr in columbia presbyterian hospital he is the head of colorectal surgery. He comes from the Cleveland Clinic. I went for a consult my husband and i liked him very much. We talked about moving the pouch and seeing if I had enough intestines since I already had 5 surgeries. The only thing is he didn't do the BCIR he did the K pouch so in september 2014 I had changed my BCIR to a K Pouch had the opening fixed and the hernia repaired I thought he was going to move it to the other side but he said it was going to be many more hours under so he didn't do it. So in the spring of 2014 I started to get severe pain worse then before I had the surgery and eventually a prolapse. the cat scan did not show a hernia but he scheduled surgery to repair the prolapse in August 2015 while he was in he found a bad hernia muscle was ripped from wall or something to that effect. He repaired with mess not plastic mesh. Well needless to say about a month ago I was having more pain and stool and gas leaking from the site. I never as long as i had this surgery ever had stool or gas coming through so I am very frustrated at this point. Oh and also have a growth on the lip of the opening that grows bleeds and grows again. Had a scope done recently shows I do not have a slippage but another hernia. The dr said I can have another surgery putting in a big piece of plastic mess but there could be complications with that. I asked if it could be moved to the other side and he said yes he could try fixing it. He also said I could stay like this some people do with stool leakage and gas leakage my problem with that is I didn't have 7 surgeries to have leakage and also I have been having severe pain from the hernia. I guess my question after all my blabbering on is what do you recommend since you know more about this. If you do not wish to give your opinion I would understand but I am kind of upset because he kind of made it my decision it was you can schedule a surgery and he wants me to lose 10 pounds even though I originally was this weight when I first saw him or He will see me in a year. Thank you for reading all this and any help you can give. Irene
Replies sorted oldest to newest
you have had a tough road to travel of late. i can understand how frustrating it is. a couple of comments.
doctors now let patients make the decisions, that has been an evolving practice since some time in the 90s. that might be part of the situation, or he wants you to wait for some reason. would you feel comfortable asking him more about how he is making his decisions, esp about the weight, or letting you make them?
kiran is highly considered amongst the k pouch docs. i trust you know that. another doctor in nyc, in case you want a second opinion, is dr. joel bauer. he doesn't take all types of insurance, but it might be worth the appointment price to talk to him.
i am only two months out from my k pouch surgery so certainly can not provide any info on how to manage it. perhaps others will see this post and add comments on the leaking and gas. i too would be interested in knowing.
good luck and keep us posted, janet
I like to pose questions that make it personal. Ask something like, "What would you recommend if I were your sister or mother, or if you were the patient?"
Of course, the final decisions are yours, but it is good to know what he would do in the same circumstance.
Jan 
Thank you Janet and Jan. Janet I like Dr. Kiran very much and he is a very good doctor its not him Im frustrated with I guess it just the whole situation and I am not sure what to do. Jan I think I am going to do that when we speak again. Thank you both for answering me I really appreciate it. Irene
Irene,
My feedback pertains to your hernia problem, which I have experienced. My colon was removed 5 years ago after it suddenly went toxic from UC. Four surgeries later I had a an angry J pouch and was experiencing dangerous and painful blockages. I also ended up with a massive hernia at the repeatedly reopened surgical site. I initially put off having it repaired because of all my other pouch complications and my colon doc agreed. But more blockages and a trip back to ICU made her recommend that I have it fixed.
The hernia surgery was done by a general surgeon who specializes in, and trains other docs on, techniques for complex hernia repairs. He used a technique called component separation where he pulls a layer of the muscles from the sides to the center to kind of sandwich it with biologic mesh (I think it was pigskin.) He specifically used the biologic because he sees less complications with it than the other man-made options. My colon surgeon assisted with the surgery -- to eyeball those parts and help the hernia surgeon eliminate or reduce what could be causing blockages while they had me open. (They did!)
It has been a couple years now and it has healed well and is holding my guts in :-) But you should know, it has added an ongoing layer of discomfort and occasional pain, along with killing any hope of strenuous activity. All of which I learned is normal -- and the activity wasn't possible anymore anyway. So better is good!
What little advice I can provide is this: I learned it is not uncommon for people with multiple abdominal surgeries (colon or otherwise) to have hernia problems and also to experience failed repairs. I hope you can find a doc that specializes in complex repairs who will consult with your other surgeon. Some docs will insist any general surgeon can fix a hernia, but there are too many techniques, meshes, and contributing medical conditions that can make it very difficult -- you want the doc with the most experience and hopefully, successes!
Also, my hernia specialist was pretty positive he could get a good outcome, in part he said, because I wasn't overweight. He was also emphatic I not gain weight afterward, saying it was the biggest contributor to failed repairs. (I have not.) I only write this because of your mention of your doctor's 10 pound comment. That too might be a good thing to address with a hernia surgeon.
I sincerely wish for you better health and helpful guidance moving forward -- please let us know how you fare.
--Jennifer