advice

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