Skip to main content

Last year, I had a j pouch repair at the Cleveland Clinic.  I do not wish to mention the surgeon right now (although if you do some research on my other posts you can figure it out).  It has taken me a long time to be able to write about what happened for multiple reasons.  One, I was too angry, and two, I like the doctor as a person, and it's hard to write negative things about someone you like.  However, after recently hearing another disheartening story involving the aforementioned doctor, I felt it was time to share my story.

After being diagnosed with j pouch prolapse by the esteemed Dr Shen, I went with his referral and consulted with a surgeon at the same facility.  Wanting the most minimally invasive option possible, I specifically sought out laparoscopic surgery.  I had a consult with another doctor in Texas who used robotics and was impressed by the technology and the idea of not being cut into again in such an invasive manner.  During the initial consult, with my boyfriend as a witness, we were under no circumstances told my chance for laparoscopic was only 10%. We were sold a false bill of goods and told that it would either be laparoscopic with ileostomy or laparoscopic without ileostomy.  There was NO other dialogue.  In fact, it was reiterated over and over that these were the two options.  In closing, I asked again to make sure I understood what would be happening.  

The day of surgery, I awoke to extreme pain (in which they refused to make me comfortable, but that's another story for another time).  Later, I could not understand why laparoscopic hurt so badly.  Considering the Pain Management team would not administer the proper dose of pain meds, I was left in a considerable amount of pain.  I finally asked the nurse why it hurt so much, and she nonchalantly said because I'd been cut into.  Imagine my shock when I lifted my gown and saw the bandage.  However, still confused, I remarked that it was a large bandage for laparoscopic.  That's when she said, "Oh, no, you didn't have that done.  You had a laparotomy."  I was in shock.  

I called my boyfriend immediately, who in turn expressed his shock because he had spoken to the doctor following my surgery, who did not tell him what they had done.  

To make a long story short, because I was so sick from pain and struggling to make it through those five days of hell, I could not muster the energy to put my thoughts together enough to confront the doctor (who rarely made an appearance).  I remained confused, scared, anxious, and worried.  I did, however, bring it up to another doctor on my surgical team.  I said, "Why was I not told I was going to be cut into?"  His response?  "Well, would you have done the surgery if we had?"  I couldn't believe what I was hearing. 

Months later, I still questioned whether I misheard the doctor during the initial consult.  Because of this doctor, I canceled my meeting with the doctor in Texas, thinking I was getting laparoscopic.  I didn't even do research on laparotomy because I was not told this was most likely the option.  I searched and searched my mind, wondering if I simply didn't mishear what she had said. My boyfriend (who I pointed out was there), assured me that was not the case.  I questioned myself, that is, until I looked through my medical records more thoroughly and discovered the anesthesiologist's report, which mirrored what I was told at the initial consult. It said laparoscopic!  Nowhere was it written that I would be getting a laparotomy.  

I feel duped, betrayed, violated.  I would have put more weight into my decision if I would have known I'd be getting cut into again.  Now I have a scar that is even lower than my original scar, a series of what feels like never ending blockages, and chronic pain.  I am so angry that I was lied to like this.  This was my decision to make, not theirs.  Whether or not the lying was intentional, I do not know.  I do, however, now know for sure that we were not told this during the consult.  

I am sharing this story to warn others to get a second or third opinion.  I don't know what I will do at this point.  It has been hard for me to confront this surgeon because I liked them so much.  But recently, a doctor friend told me a story about this surgeon, a similarly negative incident happening to his friend's daughter, who was getting worse under this doctor's care.  That's when I decided I had to share.  

I consider this a breach of trust, a violation of ethics, and I do not know what I should do or am supposed to do.  I don't want to ruin my relationship with Dr Shen in any way should I need him for further testing.  But I don't want others to get hurt either.

Thank you for reading, and I welcome your input.  FWIW, I had my reversal at another hospital and obviously by another surgeon.  The aftercare could not have been more different.

 

 

Last edited by Californication
Original Post

Replies sorted oldest to newest

I'm so sorry you feel betrayed and I can understand your frustration.  Your doctor's attitude after the event is highly concerning! It sounds like he basically admitted lying to you to get you to have the operation.  When I first joined I felt similarly mislead, and perhaps I didn't need a colectomy at all. But that's another story.

 

Playing devil's advocate for a second though, laparoscopic procedures are never guaranteed.  Certainly in the UK they will try the keyhole surgery, but if there are complications or it's more difficult it increases risk, they will convert to open surgery and that decision is made while your in the table by the surgeon!  If that is what happened I could understand your surgeons decision.  Whether you feel it right or wrong he would have had to make a judgement call based on his knowledge and ability. I can't imagine that ever being and easy decision for the surgeon, especially if he promised key hole.

 

But again you surgeon doesn't seem to be offering the above as an explanation.  What does Shen say about it?  Does he feel the right action was taken?  If the experts are in agreement the correct action was taken that might help put your mind at rest?

Sorry to hear that this happened with you and your surgeon. My surgeon was very straight with me in letting me know his 'plan' was for laparoscopic with robotics; a keyhole incision. However, he did emphasize that this could change depending on how things were once surgery began.  As things turned out, I did have the laparoscopic surgery.  When I had my hysterectomy, my gynecologist did the surgery.  He said he would try to do it laparoscopically, however it turned out to be open.  I do regret having not gone to someone more skilled than he was.  In the end, my colon rectal surgeon cleaned up a lot of scar tissue from that surgery, so it does look better than it did.

Wow, that was some terrible communication. We can't actually know if the surgery was medically incorrect in any way, but what a mess. I think if my pain meds had been stopped after two days I'd still be doing prison time for what followed.

Sometime laparoscopic surgery turns out to be dangerous, and really needs to be shifted to an open procedure. OTOH, sometimes it just becomes very time consuming, and surgeons vary in when they run out of time/patience.

Thank you for sharing your experience. What a nightmare! I did a search on your previous posts and it turns out it's the same surgeon I have just been referred to for repair of dysfunctional pouch. Now I will definitely seek a 2nd opinion. No one deserves to be treated like you were! I wish you well with your current blockage issues. Hang in there! Sending good healing vibes your way.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×