Please Help. Surgery imminent (24 hours). Wife has twisted small bowel

I am so SO sorry this is so long.   I am really kinda desperate and have trusted so many of you for your input over the years.   From the blessed Jan to so so many of you. 

I will give you as concise a facts as I can.  Everyone's story here is probably just as complicated in it's own way.

We live in Utah (not Mormon) and Utah is the "AAA Baseball league" of colon surgeons (not the best selection).   Why do I say that?  My wife had a colectomy with J-Pouch performed in 2005 by a surgeon who was actively killing patients with his incompetence during the same time he came within a few days of killing my wife.   

Here's a news article about this scum of the earth.

Okay, SO I pull her out of that hospital in 2005 and she slowly recovers and has her takedown in 2006-07 but the scars mentally run so deep.

She has done okay since then (J Pouch okay = random blockages, pain,  scar tissue pain etc) but nothing major. ...Until this week.

Crohns flared on her past couple months so we put her on Remicade and after the 2nd infusion, she started to feel pain higher in her abdomen.   She went downhill last weekend and we brought her to the ER.   CT came back "Twisted small bowel".  Surgeons came in a literally said, "Okay, so we need to go full "open surgery" and straighten these loops BUT also cut all adhesions and realigned the small bowels with our hands  so that there is better flow path etc etc.   NO talk of laproscope...nothing like that.   Just atomic weapons of surgical words.

Now,  30 years ago, we would have nodded our head and said fine.  After 60-70 hospital visits past 30 years and all that we have learned,  our first response was HELL NO!!  NOT without a chance for these loops to clear.  

Here's where we are at.   We lost insurance this year so we are on the gov plan.  I was it's biggest enemy until you need it.....thennnnn it's ummmm not so bad.  BUT it 100% does not cover Mayo....Cleveland.  Just this one hospital system.  We have been trying to put these surgeons off since she was admitted Tuesday afternoon but today they said, "Look we need to see if the loops are losing blood flow.  Tomorrow you are either getting surgery or you are going home!"  See, it's just hot fun up here in bush-leagues of doctors.   

My wife is literally having panic attacks.  EVEN if this goes well,  this sounds like a nightmare recovery waiting to happen.     I am a nervous wreck and we just are so lost on what to do.    

Last question.  These surgeons are "trauma surgeons" and "general surgeons"  NOT Colorectal surgeons.   I should be demanding a Colorectal surgeon should I not?? 

 

Original Post

First let me say how sorry  am that you and your wife are dealing with this.  Second, where in Utah are you?  I have a nurse friend from Utah, and just might know someone depending on where you are and where she is from.  

Now.  Trauma surgeons are usually the best surgeons because they work under difficult circumstances more often then not.  But they are no experts in anything, just good at handling stress.  I would first try for colon Rectal.  Scream and yell if you have to.  Having am open surgery is not the worst thing in the world.  My son, who is 28, has had three of them.  The good thing about an open surgery is that the doctors can see what they are doing rather than feel around.  A lot of old time doctors still prefer open to lap surgery.  They get a better view.  I had open heart surgery that way.  I’m still alive because if the open concept. I would be more concerned about the after care and how experienced the surgeon is that how the surgery is done.  You have a good working knowledge of what is happening and how it needs to be done.  Trust your gut.  Listen to your heart.  Your intuition is always correct and you will know what is correct.  If you don’t like the people caring for your wife, have her moved if possible.  By the way, what hospital is she In?  I’m sure someone here would be somewhat familiar.

Good luck to you and your wife.  Tons of good thoughts and prayers coming your way.  

 

Dianne

To deal with such a situation I would certainly want an experienced colorectal surgeon. I am very sorry to hear of your wife’s situation and that the care she is receiving is constrained by insurance coverage. Perhaps, an appeal in this situation could lead to expanded options. I would look at your policy carefully to see if exigencies can be invoked to get her moved to a more specialized facility. This is a very, very serious complication and perhaps you can move up from AAA to the major leagues based on exigent circumstances.

I’m not sure a colorectal surgeon would be the best choice here, since the problem doesn’t involve a colon, a rectum, or a J-pouch. The good news is that this is a fairly straightforward surgical problem, even though there is nothing routine about it for the person going through it. If the bowel is so twisted (usually due to an adhesion) that the blood supply is cut off then that portion of bowel begins to die. That’s a life-threatening situation. The delicate balancing act is that some bowel twists really do clear on their own, but you mustn’t wait too long for that kind of luck. That decision may not be straightforward at all.

I hope all goes well. One crappy surgeon really doesn’t say much about the other surgeons at a hospital.

Add Reply

Likes (0)
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×