Surgery number 4 and feeling helpless

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lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 3/18/2010 5:10 PM (GMT -7)   
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

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 3/18/2010 7:58 PM (GMT -7)   
oh. that just breaks my heart for you.
can you consult with another surgeon. See if anyone else feels that it is so risky. Maybe someone else would be more confident for you. Esp. if you go to a big hosp. (cleveland, mayo, etc.) where they are going to have tons more experience, always.
for me, i'm always about getting different opinions. I've had lots and there are so many opinions.
I don't know, i just wouldn't want to trust someone who's going into the surgery trying to talk you out of it. and that's what it sounds, to me, is going on.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/18/2010 8:03 PM (GMT -7)   
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.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 3/18/2010 8:07 PM (GMT -7)   
I am so sorry to hear you got such an awful letter. really is hard to see things in black and white. Between the lines it sounds like he is trying to cover his butt. I would definitely go for another opinion. I agree with the others.

Sending love and prayers.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/18/2010 10:08 PM (GMT -7)   
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

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/19/2010 4:15 AM (GMT -7)   
butterfly~I'm so sorry you are dealing with this...if I am not mistaken, this was your 2nd opinion, right? What was the opinion of the first surgeon?

In the letter you copied on here it said 'alternatives'...are your doc's suggestions less complicated then what you are requesting?

Is there a way to take baby steps to make the surgery safer?

I know that I always receive a follow up letter from my C/R surgeon to recap my latest visit and it isn't always what you want to relive:( I would take the information, that is now in 'black and white', and really look into all the options. You might be able to find a compromise in it somewhere that isn't as high risk and will give you relief.

(((HUGS)))
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 3/19/2010 7:50 AM (GMT -7)   
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

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/21/2010 9:32 AM (GMT -7)   
butterfly
 
      Oh I am so sorry to hear that, what a letter to recieve.  Boy I would get various opinions if you have not already done so.  Its a rough time for you and I hope that you recieve the proper treatment.  My heart goes out to you because you have been through so much already.  My God bless you on your journey and really take the best option for you many opinions need to be considered if you can afford to get them...my thoughts and prayers are with you.
 
Leslienono
Leslie King
 
 
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
 


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 3/21/2010 1:51 PM (GMT -7)   
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

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/21/2010 2:18 PM (GMT -7)   
yeah utterfly   I have had more surgeries than that but they were small ones like to implant a morphine pump, then to take it out, they tried to put a nerve stimulator in me and because of the scar tissue in my back they were not able to get in that space, I have had idet proceedures, just to name a few.
 
I stayed really positive till just the last 6 months when I thought no one was going to help me.  Then I had a glimmer of hope with a few doc's but no.  So that is why I found my own doc and told him what I needed.
 
Its hard to stay positive but I have a good support system around me, plus you just have to so that you can be right in your mind and soul.
 
I too was where your at where my every wakeing thought was on my illiness....should I eat or not , did not want to wake up in the morning because I knew what was in store for me during the day, and could not wait to get to bed at night.  Just so I did not have to hurt or deal with anything.
 
I know its hard but my gosh you have been through the ringer yourself and just know that someone has to give you back your life.  I am so happy that your researching your doc, thats great, and will give you the confidence you need.
We are all pulling for you so stay strong, and if you need me just know that I am here for you.
 
Leslie
Leslie King
 
 
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
 


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 3/21/2010 3:35 PM (GMT -7)   
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

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/21/2010 8:16 PM (GMT -7)   
butterfly   I am just like you sweetie, this message board helped me try different OTM, over the counter medacine. and different ideas of how to deal with different problems, that finally is how I diagnosed myself.
 
This forum has saved my life.  All the members are gifts from God I believe, they helped me get through my darkest hours and to know that I like you are not alone.
Thank goodness for this site.  So stay strong and be well cuz we are right here with you...
 
Leslie

Leslie King
 
 
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
 


Ileostomyfree
Regular Member


Date Joined Mar 2010
Total Posts : 23
   Posted 3/31/2010 8:33 PM (GMT -7)   
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

Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/1/2010 8:53 AM (GMT -7)   
I HAVE BEEN THERE!! Hang in. I was devastated when I found out I had a fistula and needed a drain tube. I'm not sure if this is all the same but it sounds so much like what I had.

After my take down, we thought everything was healed up until I started getting BAD pain three months later. We did a contrast and found the fistula... I had a drain tube placed and was told I would have it for two weeks at the most! A MONTH LATER- they took it out (because I hated it so much) and we decided to have "corrective" surgery because the tube didn't help the fistula heal. That surgery was SO invasive. I was swollen for a long time afterward because of the adhesions he found and "scraped" off!! It has been a month since that last surgery and I'm am feeling so much better- emotionally and physically.

All I can say is roll with the punches. It was so hard. I still have bad days but I am working it out. Things will get better in time. And once there is no pain... life is sweet!
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009/ Reversal November 2009/ Fistula correction March 2010

Check out my blog: shlookshlies.blogspot.com/


Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 4/1/2010 11:45 AM (GMT -7)   
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.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/1/2010 8:48 PM (GMT -7)   
Hi Butterfly,

I forget, did you call your surgeon to talk about the letter? even though you'd already talked. Between that and applying for disability I can say "I feel your pain." Best wishes on both accounts. Rosemary
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