Surgery number 4 and feeling helpless

As most of you know, I'm having a re-operation for my ileostomy in July and hopefully get rid of my velcroed leg bag. I am nervous, but received a letter in the mail from my colorectal surgeon today, and I am so very scared that I can't get any of my intrusive thoughts out of my mind. I was in the hospital for 52 days last year and this is almost too much to bear. Part of my letter said " As you know, when we met on March 8, 2010, I reviewed with you the results of the recently performed CAT skans and water-soluble contrast studies. We discussed in great detail all of the various risks, benefits, alternatives, possible complications. You understood these issues and requested to proceed on July 14, 2010, with an exploratory laproscopy, extensive lysis of adhesions, takedown of enterocutaneous fistula, hopefully construction of an end-Brooke ileostomy, and any other resections as necessary." It further reads "We discussed in great detail with you and your family all of the various risks, benefits, alternatives, and possible complications, including but not limited to severe infection, loss of all of your small intestine with requirement of permanent intravenous nutrition, and death. I have asked that you have at least 4 units of blood available for the time of surgery. You understand the gravity and serious nature of this surgery, along with the significant potentioal for complications, risks, and death, and you have requested to proceed with the surgery." I have been crying since I opened and read my letter this afternoon. Hearing this news was bad, but to open this letter and actually read it, was awful. I am a mess, but don't have any choice. That is why I feel so cheated. butterfly

well, it does sound scary BUT they have to tell you all that stuff, like the risks of death and such.
Anytime you have any surgery they do that, as you know.
When my son had his tearducts drained, they gave us this HUGE list of possible complications, wtih all kinds of crazy stuff that had nothing to do with his eyes.
Now, im not sure whythey sent you a letter with it in it.
But i think alot of it is just covering their butts for laiblity issues.
However i do agree with such a huge surgery that maybe you should get a second opinion.

Hi Butterfly,

I responded to you under one of the other topics ToTal Colectomy part whatever page whatever, I forget.

But I strongly advise not doing business with this surgeon. Not only is he covering his butt for legal issues if bad things happen to you, but it is clear that he is not confident that HE can do this surgery for you safely. This is a lose-lose situation. I suggest one of the big hospitals. If you could possibly get to Massachusetts Lahey Clinic colorectal surgery dept. has a specialty on "complex reoperations" that sounds appropriate for you. Or Mayo or Cleveland Clinic. If staying with what you have would be doable to stick with, then stay with that (though I don't blame you for wanting a normal ileostomy).

Remember as all of us forget, WE are the paying customer. Are you going to pay someone who is bottom line saying "I don't want to be involved with this."? and "I am not capable of doing this for you."?

I know it's hard when you are seeking help, trust me I know. But this medical world is all about dollars, cents, and docs avoiding liability. Except for the few who still practice medicine for the reasons it should be practiced. This guy sounds like bad news to me and even put it on paper for you to see. At least he gave you a sign.

Good luck, Rosemary

Thank you all for your responses, but I don't think that a second opinion will do me any good.  My surgeon is from Cleveland Clinic and has put me through countless tests.  He is supposed to be one of the best in the world, and spent week before last in a colorectal conference in Malaysia and was the only American having a platform there.  I don't think that the letter was a cover his butt letter.  He really was telling me he didn't know what could happen until he got inside me.

My only other option than this surgery is to keep my velcroed leg bag and learn to deal with it.  I've had it for 9 months now.  It is burdensome and a bad quality of life, because it has to be flushed at least once daily and I can't do it by myself.  My husband travels alot for work and so if he is gone, I'm cramping and unable to get the obstructions in my tube out by myself.  It takes him to use the syringe and squirt water or coke in my tube, and to pull it out, while I hold the container so that liquid stool goes into it after it comes out of my tube.

This is all very scary, but I really feel that there aren't any other options.

butterfly

Leslie, thank you.. You've had so many surgeries, too. How do you stay positive? I'm trying to digest everything in my surgeon's letter, but it's taking alot out of me. I don't know how to just let it go for awhile and not obsess about it.

My insurance only covers Shands or Emory Hospitals. My going to Cleveland Clinic is out of network, and it's been very difficult to be able to go there. I know that I'll be in the best of hands with my surgeon. I've read some of the journal articles of what he's written for patients like me, and he wasn't being harsh, just truthful.

My upcoming surgery isn't going to be easy and there are no guarantees.

butterfly

My gosh Leslie, you're so sweet.  I am crying right now.  I am trying so hard to hold myself together.  Like you, I am lucky that I have a strong support system.  My husband has been by my side thru all of my appointments, testing, surgeries, and recovery.  My mom lives in another state, but has always been here for me, too, and she'll be with me and my husband for this next surgery and hopeful recovery.  Also, my counselor is fantastic.  I've known him for 10 years now and I think that he knows me better than anyone.  I don't know what I'd do without this message board and them.

butterfly

Hi Butterfly,
You have me crying here as I feel I have been in your situation. I made the mistake 8 months ago of trusting who I thought was a very good doctor from a reputable hospital. I let him operate on me last July. 8 days after that first surgery- I was home with my wonderful husband when I was getting progressively worse. Sepsis had set in. I was rushed to the emergency room only to have my 2nd surgery and woke up with an ileostomy. I was still very trusting of him and his partner until a month later they wanted to operate again telling me my ileostomy wasnt diverting properly. I was getting sicker and sicker. One day away from death I was told. I left their office that day and never returned. Found a wonderful colorectal specialist in another State at a very large known hospital. I was put through test after test and found out that the surgery they did was unneccesary and it had caused more of a problem for me by creating a hole in my bowel. I have been through 5 surgeries in the 8 months with the last being 5 days ago to reverse my ileostomy.
What I'm really saying is I do hope you have a second opinion no matter how good the doctor is. I've heard of too many horror stories where these doctors are covering themselves from lawsuits. I just wouldn't want you ending up with anything done PERMANENTLY and no turning back. I believe if I hadn't left the former doctors, that is what would have happened to me. I would have been an ostomate for the rest of my life. I went from a healthy 50 year old woman to a very sick one. I am now Thank God on the mend. The journey has been depressing and lonely. If it wasn't for my wonderful husband of 30 years...I would have lost my mind. My current doctor saved my life and sanity.
You will be in my thoughts and prayers. Just don't rush into anything. Get one more opinion (even if you don't use those doctors) just to ease your mind and know you're doing the right thing. Thoughts and prayers are with you. xoxo

Your surgeon is playing CYA with a letter such as that. It's written for legal defense if something unplanned happens.

I can only share this thought. If what you need is not critical or immediate life-saving, you may want to find a surgeon who is more concerned with his/her patient's welfare than his legal issues.