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Hi all!  I have a question and need some expert opinions.  Jeffrey as an appointment with Dr. dietz in June.  We wanted to see him rather than dr. Remzi because I understand he is a good fix it guy.  Redoing Jeff's j-pouch is not an option, he doesn't have enough small intestine.  Here is my issue.  Dr. Dietz was to do exploritary surgery on Jeffrey.  I'm not sure what he expects to see or find.  My surgeon has said that the mirco tear in Jeffrey's pouch is in the back of his pouch and well down into his pelvic area.  You can't see anything!  My concerns are this.  1. We are just getting him off narcotics that he has been on since Sept. And he is having a really tough time of it.  2.  I don't want him open just so you can poke around.  3. Jeffrey makes a lot of adhesions and opening him up again will only make more.  4.  Jeffrey does not do well after surgery, any surgery and they would not keep him overnight.  For the past 3 surgeries, the least amount of time he was in the hospital was 5 days.  And then either getting on a plane or taking a 10 drive home does not sound like fun to me.  

Am I wrong to want to cancel this appointment and perhaps put it off until Sept/October when Jeffrey would be better ready for take down?  If the fistulia is gone.  Or if it is not, then do a repair.  I know my surgeon spoke to Dr. dietz because they gave me the phone call notes.  It was all kind of left in the air.  And I can't get ahold of any one in Dietz's office.  I can't see doing this essential for nothing.  I'm worried about the narcotics and just think going out there when there is something to be accomplished would be a better option.  

 

Thoughts?

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6 of 1 and half a dozen of the other...

You need to weigh the dangers versus the possible benefits...what could they fix if they went in? What are the possible finds? What damage could they/will they do? Adhesions, narcotics, post-op anxiety etc.

How is it going to help him and how will it hurt?

That is my personal game...my lists of pros and cons. 

Once I have my lists done and I have covered all possibilities then I make a primary decision...then take it to my surgeon to see what he has to say.

By then I can see clearly and usually make the right choice. 

Jeff is a special case and needs to get his life back on track...how will this move him forward towards that goal?

What is his opinion on all of this? Is he a 'let's get it over-with kind of guy' or a 'wait and see' person?

A bit of deep breathing and yoga on the beach and the answer shall come to you my child

Hugs

Sharon

Generally, exploratory surgery is not just poking around. It is for finding the problem and fixing it. Often with these pouch leaks (especially with a suspected leak that cannot be found on imaging), an exploratory laparotomy is the only way. It is both diagnostic and therapeutic.

 

Do not assume he will not be kept overnight after the surgery. Ask Dr. Dietz all these questions when you have the consult. If you want to postpone the surgery, talk about that during the consult, but do not postpone the consult! If he is as good as they say he is, he can address all of your concerns. Also, ask about an adhesion barrier film, suchas Seprafilm to help prevent new adhesions from forming.

 

Jan

Last edited by Jan Dollar

Correction.  I said that the would not keep jeff overnight.  Autocorrect screwed up again.  They would keep him overnight one night and then he could go home.

 

Sharon, I've thought of all those things.  In a very conservative approach, jeff would be left on the colostomy for six months.  In June, it will be three months.m now, if his intention is to go in and repair, then that's a different story.  But I was only told he was doing exploratory surgery.  To me, that means a look around and see what we are dealing with.  And that's the part I don't agree with.  I think, rather know, Jeffrey will be in a great deal of pain and back on drugs.  So that's not good.  I'm of the opinion that lets wait the six months, this way it give the pouch plenty of time to heal, he is off drugs, and maybe won't need a fix and just have Dietz put him back together.  When it comes to Jeffrey, I'm much more conservative than I am with me.  With me, I'm just lets get this over with, but while I've had a great deal of surgery, I've never had anything as painful as this.  My open heart and valve repair was a piece of cake compared to this.  This is by far the worst surgery I have ever seen on anyone.  All of you folks, every one of you are super heroes as far as I'm concerned!  How you do this day after day, is beyond me.  All of you are amazing and I mean that from the bottom of my heart.

 

 

Most of my nursing career experience was surgical: recovery room, surgical ICU, and surgical ward. I wanted to reiterate that exploratory surgery is not about taking a look and closing up. The only time I've seen that happen is when there is nothing found to repair, or it is inoperable.

 

The idea of exploratory surgery is that when you sign the consent, there is not a specific plan, other than in a general sense. Otherwise, you have a specific procedure you are consenting to, and anything else requires waking the patient and getting a new consent.

 

They might say only one night in the hospital, but that all depends on how things go and what your son's needs are. Anyway, still best to keep the consult so you can talk to Dr. Dietz face to face, he can examine Jeff, and an appropriate plan can be set. In all likelihood, surgery would not be immediate, unless there was some sense of urgency. Those guys book pretty far in the future.

 

Jan

Last edited by Jan Dollar

Jan thank you, and I clearly hear what you are saying.  I agree keeping the consult is a good idea, but they have Jeffrey scheduled for the next day,  as you know, this has been such a long and difficult road.  Jeffrey is worn out, I'm ready for a nervous breakdown and my husband is walking around in circles.  Maybe he's ready for the breakdown with me!  If all of these surgeries were not so long and complicated and painful, it wouldn't bother me so much.  But with Jeffrey's Aspergers in the mix it completely changes the game.  I need some answers before we go out there.  I just wish someone would call me back.  I didn't realize the "exploritary" ment not having a specific plan.  I thought it was just looking around and seeing what's what.  O, I hate making decisions like this.  But, seriously, thank you.  I really appreciate your knowledge.

dianne

They probably have him scheduled for the next day for logistical reasons. Reserve the spot now, and you can always reschedule if needed. Nearly impossible to schedule on a day's notice without it being extremely urgent. Believe me, if you reschedule, they will fill the slot with someone on a wait list, so don't feel like you are "locked in."

 

The folks in the Cleveland Clinic are used to patients having to travel for treatment, so they consolidate as much as they can. Most people want to go forward as soon as the surgical plan is agreed upon. But, you can always say, "No, let's step back and regroup, and do this at a later date." For now though, keep an open mind, as June is not next week and things can change in that amount of time.

 

Take this time to try to regain your sanity. Deep breaths...

 

Jan

Last edited by Jan Dollar

I was on the operating table "ready" for my takedown and having a very emotional time thinking about giving up my temporary ileostomy which I had for a full year and which I had learned to live with successfully.  The unknown was too much for me and I burst into tears.  My surgeon knew how I felt and said, "You can still change your mind."  So......if changing one's mind is an option while on the operating table, giving them notice of almost a full day should be just fine.  Best wishes!

Just one small experience: I agreed to exploratory surgery for "random" abdominal pain which no drugs or treatment helped; it was debilitating. All tests for pretty much everything came back negative or inconclusive. They went in and removed my gall bladder, which looked "odd"; they couldn't find anything else other than some scar tissue which needed trimming. After the surgery they cut open the gall bladder only to discover that the blasted thing was completely dead inside, slowly spreading poison toward the outer layers -- even though I had been tested and tested and tested for gall bladder problems and nothing ever showed up.

 

I got better and haven't had the pain again.

 

Gin

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