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JPouch surgery set for Oct

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Posted 9/20/2012 3:46 AM (GMT 0)
My surgeon is concerned that I may have too much scar tissue for my JPouch since I was so sick. We won't know until the operation.
Any ideas to help me "stretch" the blood vessels? Anyone have any ideas? I really want a JPouch.

My surgeon said if he can't stretch the blood supply to create a JPouch, he will go ahead and remove anus and all and make my ileostomy perm instead of keeping it temp to try again later...
He has had one patient that they tried every trick in the book but couldn't give her the Pouch. This scares me.

Jen S
Posted 9/20/2012 4:41 AM (GMT 0)
Please get a second opinion as soon as possible from someone who has done hundreds of j-pouches. Your first surgeon may be right but he obviously left you feeling very uncomfortable.
Posted 9/20/2012 11:56 AM (GMT 0)
I agree with the above. If a surgeon said that to me I would get a second opinion. Where do you live?
Posted 9/20/2012 1:06 PM (GMT 0)
     In all due respect to the first two responces, I just want to let you know that I was not a candidate for j-pouch according to my surgeon.  It could have been any of the following reasons, but I believe it was a combo of all of them:  1) age 63 at time of surgery   2) prednisone dependent for two years straight but on it numerous times during twelve years I suffered   3) LOTS of health problems...uncontrollable high BP, prednisone induced type 2 diabetes.  My surgeon would not touch me until I passed a stress echocardiogram, which I did, thank GOD.

     I didn't care if I needed a "bag", I was just soooo sick of being sick.  Living with a permanent ileo is NOT bad at all.  You cannot see it under my clothing.  I am living life to the fullest at age 66, which I doubt I would have reached had I NOT had the operation.

     Before the operation I took anywhere from 17 - 25 pills daily plus rectal meds.  I now take only 1 pill a day and that is for my WELL-CONTROLLED blood pressure.

     I do agree with the first two posts about seeking out a colorectal surgeon who has done LOTS of j-pouch surgeries.  I am not sure whether my surgeon fit into that category.  I do know he is head of colorectal surgery at Pennsylvania Hospital in Philly, has been in practice over 30 yrs and trained at the Cleveland Clinic.  That was good enough for me.

Posted 9/20/2012 1:10 PM (GMT 0)
Age and years of prednisone dependency are not reasons for one being unable to get a jpouch, but additional health problems can be. We have people who have successful jpouches that were on prednisone for 25 years, and we have successful jpouches who had their surgery at age 81. So never think prior steroid use or age can be a factor in a surgeon's decision.

If you really want a jpouch, I agree you need a second opinion from a highly experienced surgeon. Please let us know what state you are in and we can give you recommendations or point you in the direction of someone who can.

Sue
Posted 9/20/2012 2:14 PM (GMT 0)
Definitely be sure you are dealing with an excellent CR surgeon with a lot of experience with j pouches. My husband's Dr at Mayo was in that category.

He knew my husband wanted a shot a the jpouch and he did his absolute best but in the end could not do it. He only scheduled my husband's surgery for that day and as it turned out it took 7 1/2 hrs. Before the surgery he advised all the pros and cons and his opinion IN MY HUSBAND'S CASE he thought it might be difficult but he would definitely try to fulfill his wish. I have the pages of detailed in-depth operative notes and comments and was kept aprised every 2 hrs or so of the progress of the surgery. In the end my husband ended up with the permanent ileostomy and total proctolectomy. I was disappointed for him but he took it in stride very well. We both knew and felt that his surgeon did his absolute best.

There are no regrets or looking back here BUT as stated you need to feel totally confident going into this. I truly hope you get your wish but if for some reason your anatomy and any difficulties that might be encountered during surgery, please do not feel that the ostomy is so terrible.

To be at this point of needing surgery, whatever the outcome, your life will be much better. Best of luck and I truly hope you are able to get the the results you are hoping for. Let us know how you are making out.
Posted 9/20/2012 2:22 PM (GMT 0)
I am in the Memphis area of Tennessee.

I don't know another surgeon here that does these. Apparently they are hard to find and the previous one retired.

I don't know how many mine has done. All I know is he started doing them about 10 or  12 years ago. He did tell me sometimes he does several a month and other months he might not have one at all.

Jen S 

Posted 9/20/2012 6:55 PM (GMT 0)
You can try Dr. Alexander Mathew, he trained at the CC, or go to Vanderbilt. Not many stellar choices in TN so if you really want a jpouch you might consider traveling. I traveled 2 hours to get to the best surgeon in CA. I've never had complications so it was worth it, and that was 11 years ago.

Sue
Posted 9/20/2012 8:58 PM (GMT 0)
Vanderbilt is 3.5 hours from me. :-)

I can't find where my doctor did his residency. I wish I could find that.
Thanks for the info! I never heard of Dr Alexander Mathew.


Do you wonder what makes a doctor decide to specialize in what they specialize in? I do.

Jen
Posted 9/20/2012 11:18 PM (GMT 0)

I would also suggest a 2nd or even a 3rd opinion since you really want a j-pouch.  And, as others have honed in on--make sure it is someone very experienced with the procedure.   How to go about that, I am not so sure, but you got some good advice from the others.  You need piece of mind in knowing that you have done all you can before removing everything and having a permanent ileostomy. 

Since I have Crohn's, I was never a candidate, and welcomed the freedom I got with my permanent ileostomy.   However, I feel for those of you who want the j-pouch, but fear complications.   If I had been able to have a j-pouch, I would have hands-down gone to Cleveland Clinic, as I am in Ohio.    

Good luck and keep us posted.

Posted 9/21/2012 1:14 AM (GMT 0)
It is worth traveling to find the best surgeon you can. Be direct and ask black and white questions. You want a surgeon who is VERY experienced in jpouches. And has done hundreds of successful ones. This is hugely important. The difficulties of traveling for you and your significant others are nothing compared to the difficulties encountered if a less experienced surgeon is attempting a jpouch on you.

Spoken as a "been there done that". You need the best you and your insurance can find. no matter how far away they are.
Posted 9/21/2012 2:16 AM (GMT 0)
A 3.5 hour drive is nothing, compared with the rest of your life. Please don't let distance deter you from making the best health decision. A qualified surgeon will ensure you need little follow-up.

Sue
Posted 9/21/2012 4:59 AM (GMT 0)
I drove 3.5 hours to my surgeon even though there are others an hour away. I wanted one of the best (Cleveland Clinic). This is a highly specialized operation so you want someone with experience.
Posted 9/21/2012 12:06 PM (GMT 0)
Hopefully traveling a bit is possible for you because if you really want a j pouch I can't stress enough how important it is to have a surgeon that has done tons of them. I know we all sound like a broken record but you dont sound too confident with your surgeon in your first post. Best wishes!
Posted 9/21/2012 1:01 PM (GMT 0)
Honestly what everyone says is so true...it is a 3 hr drive for us to Mayo and we did a lot of that back and forth with the UC for almost 3 years prior to the surgery. He had very good local care here and everything was done by the book but his Gastro Dr here felt so bad that nothing was working. She asked our permission to send in a referral to Mayo and Shands as they were more "cutting edge" and she was at a loss and wanted him to go to the best especially since surgery really looked like it was in his future. She didn't want us to think she was dumping him but was very honest that if it were her father, husband etc. this is what she would do.

Mayo answered the referral first so that is where we went. Shands is about 90 mins. away and would have been more convenient but we knew Mayo was very good and didn't even try for Shands once they answered the call.

A bit inconvenient...yes....but as I said to hubby this isn't a dress rehearsal and you need to go where the odds are definitely in your favor. Of course we had stops along the way (I knew where they all were...lol) and he would wear depends as extra insurance. Funny never had an accident...I think having the depends on took a lot of the anxiety away. Only once we had to pull off to the side of the road due to urgency. You do what you have to do.

This is probably one of the most important decisions in your life and you certainly want to make the best informed one you can and have nothing nagging at you if you are making the right choice. Once you make the decision it seems like there is this inner calm that occurs and helps you out.

I wish you the best of luck in getting what you want and that it is an easy adjustment overall for you.
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