New surgeon ruined my stoma

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expat
New Member


Date Joined Dec 2010
Total Posts : 8
   Posted 12/4/2010 2:43 PM (GMT -6)   
Just had my worst hospital experience ever.I would love to compare notes about my hospital stay sometime. My US friends feel I was not treated well but this was my first stay in a US hospital so I have nothing to compare it to. I am not sure if my complaints will fall on deaf ears. Right now though I am desperate for some advice on what to do about the disaster of a stoma I have been given.

I originally had surgery for CD in UK 9 years ago. I was given a great ileostomy and had great quality of life until now. A stricture developed behind the stoma so I had to get a resection and have a new end ileostomy formed. This was done here in USA 3 weeks ago. I had a proctectomy at the same time to 'finish' the job while under the knife. The morning after the op my surgeon came round to tell me how happy she was with the surgery and that she now had to go out of town. I would be taken care of by her partner for the rest of my time in hospital. The next day the ostomy nurse visited and changed my pouch. At this point I burst into tears. I use to have a little spout protruding from my skin that varied in size according to when it functioned. The shortest length still cleared an Eakin seal and wafer, the longest was still within the boundaries of the ring on my wafer. Now the stoma is very short -- way too short for an ileostomy. Worse than that is that the top is bent over so that the opening is against my skin at the 12 o'clock position. The ostomy nurse did not know how to console me. She talked about convex inserts, belt wearing and changing appliances frequently. This made me cry more since I am a young woman who does not want to wear a belt or spend her days tending to all this mess. My old stoma had no problems and I only needed to change my wafer (2 piece system) every 7 to 9 days. I don't want a stoma which will be a burden all my life -- I want my life back again. That was the whole point of the ileostomy in the first place.

The surgeon's partner spent most of my brief stay avoiding me. He kept telling me the opening was at the top when it was formed and it would return that way when the swelling goes down. Well he was wrong. 3 weeks later the stoma still outputs directly onto my skin at the top, matter pools around the base of the stoma there, my skin is red raw and the area beneath the skin really hurts. It is impossible to get a seal because the opening is right at the edge of the skin and I am worried that it might leak below the skin at the join. It is like everything is under tension. I can see the stitches now. The ones at the 6 o'clock position are very loose, the ones at 12 o'clock are tight and seem to be pulling the top of the stoma down towards the skin. The midline scar on my abdomen from the open surgery is also lopsided now -- it use to be even through my middle but now it bends to the left and the ileostomy side is lower than the left side, again like everything is being pulled in. My belly button has shrunk closed as a result.

I see the surgeon on Monday. Please can anyone help me as to how I should speak with her about this. I need this fixed and don't know whether to trust this same doctor to put it right or whether I should look for help elsewhere.

Any advice would be appreciated.
Thank you.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/4/2010 4:05 PM (GMT -6)   

Dear Expat,

Sorry to hear of your experience.  No, your issue has not fallen on deaf ears.  I am an American who was misdiagnosed with an internal prolapse of my sigmoid colon thought to be the cause of intermittent incomplete rectal emptying.  Misread of a scan, 3 wrong opinions from three leading medical centers in my area of the states, unneeded removal of my sigmoid colon, done wrong, other internal prolapses fixed that I did not even have nor consent to their "fixing".  result: severe internal scarring of colon, rectum, small bowel.  Unable to eat or defecate for 13 months, no follow-up to complications, 13 months of consults with 11 surgeons nationwide, ONE finally did all that could be done.......removal of dense adhesions from small intestine and permanent ileostomy and insertion of an adhesion barrier to HOPEFULLY prevent the formation of new adhesions.  Three years now and so far so good.  Stoma well made and so far so good.  Case reviewed and in litigation with original surgeons and radiologists.  BY RIGHTS, I should not even need to be on this board, but fate brought me here.  Everyone here is wonderful and your issue will not fall on deaf ears.  You will get constructive responses.  I really feel for you.

My advice, bring someone with you to your appointment who will help advocate for you when you speak to your doctor.  Take notes.  Then on the way out of the appointment tell the secretary you want a transcript of the notes from the doc for that appointment.  You may be surprised at what you read.  OR you may find out that the doc really "heard" you and is in your corner.  Had I done this with all my consults, I would not have gone down the road I did.  It is amazing (sometimes) at what you find in a doctor's notes.  Also get copies of your surgeons communications to your primary care (general) doctor.  These you can get by getting copies of your records at your primary care doctor's office.  MOST docs are on the up and up and honestly try to help patients.  BUT there are some who do not.  BEST wishes to you.  Also don't be afraid to go on multiple consults and then take your time deciding what to do.

Best wishes, Rose


expat
New Member


Date Joined Dec 2010
Total Posts : 8
   Posted 12/4/2010 4:23 PM (GMT -6)   
Dear Rose

Thank you so much for answering my post. I am so sorry to hear of the problems you have gone through. It is all just so wrong isn't it. I did not know you could get a transcript from the doc for the appointment. That is very handy to know. It is a shame they do not record the surgery itself so one could see how professional they were. It would be nice to see who did all the stitching up at the end because this doesn't seem the work of an expert !

The other worry I have with all this is what other damage she may have done inside. The surgeon was VERY surprised at how little scarring I had from my first op. I think this is why she opted for open surgery because she expected a whole mass of problem in there. I guess I have no confidence in her now and maybe my fears are unjustified, but what if she has left a legacy of scarring and other problems which were not present before. She took out the rectal stump and that was deep pelvic surgery. My bladder hurts when I empty it and I have a brown discharge from my vagina that won't stop either. I am hoping she can reassure me this is normal and will stop. But after the problems she has left me with the stoma itself I just don't know if I can trust her. Lets hope she is one of the good guys who will put things right. Are doctors afraid to admit mistakes here because of legal involvement ?

Best Wishes
Expat

still a lot to learn
Regular Member


Date Joined Nov 2010
Total Posts : 33
   Posted 12/4/2010 6:39 PM (GMT -6)   
Dear Expat,
I am so sorry to hear how badly things have gone for you. But I do have a bit of good news. The operation is documented. I've worked at several hospitals, large city and small rural. The surgeons always dictates an "Operative Report". They are part of your medical record and you can certainly get a copy, either from your surgeon's record or from the hospital. I have copies of ALL of the many surgeries I have had. They can be very informative and you can learn a lot from them. You do need to be sure you have a physician or medical professional you trust to help you understand some of the terminology. And yes, many doctors are very afraid to admit mistakes due to legal involvement. Please be sure you have someone with you at your doc's apointment to take notes and help you think of questions. An advocate is invaluable! (personal kudos here to my sister for being mine)

Good luck
crohn's since 1983, many surgeries later finally got a perm ileostomy & proctocoletomy in August 2009 (a life saver). meds: 6 mp, lomotil and immodium, vitamins. LIFE IS GOOD!

Post Edited (still a lot to learn) : 12/4/2010 5:00:43 PM (GMT-7)


still a lot to learn
Regular Member


Date Joined Nov 2010
Total Posts : 33
   Posted 12/4/2010 6:58 PM (GMT -6)   
Expat: an addendum to the above post:
 
A good operative report will be VERY detailed.  It will tell how you were positioned on the table, how the incision was made, what was seen by the surgeon, what he did step by step, the instuments he used "due to the advanced adhesions around the _______ a (some big technical gizmo sounding machine) was used to sharply disect....blah..blah...blah..." You get the idea.  It's very technical.  Ask your surgeon questions about the report, "Is it normal that you found ______ ?" " Did you have to do anything that you didn't expect to during my surgery?" The report will even give information that final sponge counts were correct and confirmed.  (think of all the malpractice suits filed in the past due to a rogue surgical sponge?)  shocked The report will tell who assisted in the surgery and what they did.  It even will tell how things were sewn up. "Oh Doctor, is it normal to use a mattress stitch on that area??"  smilewinkgrin
 
OK, that's all I can think of, I don't know how things are in other countries, but in the USA, your medical record is YOURS.  Ask for copies!
crohn's since 1983, many surgeries later finally got a perm ileostomy & proctocoletomy in August 2009 (a life saver). meds: 6 mp, lomotil and immodium, vitamins. LIFE IS GOOD!

expat
New Member


Date Joined Dec 2010
Total Posts : 8
   Posted 12/4/2010 8:04 PM (GMT -6)   
Thank you 'still a lot to learn' for letting me know about the Operative Report. I will definitely request a copy. My PCP is a good person and I am sure she will help me go through it.

I am nervous about seeing the surgeon on Monday since she could make things very difficult. But right now I really need to know how something so simple could go so wrong. I also need to know what can be done about it. My guess would be to mobilize some more bowel and then refashion it. Since I am still in pain from the first op this is not something I look forward to. I wonder if anyone else on this forum has had such a bad stoma formed and how they got it put right ?

Best Wishes.
Expat

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/5/2010 2:02 PM (GMT -6)   
Hi Expat, Yes in addition to getting your operative report, also try to get ahold of the surgical log. It tells who was in surgery, who actually did it, residents?????

Be paranoid, be suspicisious, bring an advocate. Good luck, Rose

expat
New Member


Date Joined Dec 2010
Total Posts : 8
   Posted 12/5/2010 3:52 PM (GMT -6)   
Hi Rose

Just got your message. Thanks for this extra information. I really don't know how the system works so the advice I am receiving is very helpful. I will call the hospital tomorrow and see if they have a records department. I presume that would be the best place to start. If they don't help then maybe my PCP could get the reports for me. I would rather get them through someone other than the surgeon since I don't want to get her back up. I am still hoping she will just rise to the challenge and put things right.

It is a shame I never had a picture of my original stoma. Maybe it sounds silly but I can't help but feel that before and after photos would help my cause. It never occurred to me that my stoma would be different after. I just assumed it would be the same length with an opening in the middle. I feel a bit of a fool not insisting about this but who would have thought it could end up like mine does now. Do you know what a "good" length for a stoma should be ? I am sure mine was about 1 inch when it was functioning and would shrink a bit when at rest. It would help to know what I should be asking for here. Do you know if there was ever a discussion on this forum about length of stoma ?

Best Wishes
Expat

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/6/2010 1:02 PM (GMT -6)   

Hi Expat,

My stoma is about 1/2 inch long and about 7/8 inch in diameter (mine is oval, but you get the idea).  I think Tracy said her current one is 1 inch long.  Both of ours are ileostomy stomas. 

I hear what you're saying that who would have thought your stoma would be changed by this doc.  I don't think anyone would have thought to take a picture of their stoma, but if I ever have to have anything more done (GOD FORBID) I will take a picture of mine.

In the land of who would have thought, sure wish I'd thought to have my original defecogram scan sent around to pelvic radiologists world wide to see that I did not have a sigmoidocele (internally prolapsed sigmoid colon) in the first place which lead me into all I went through.  We ALL think of things we should have or could have done had we known.  BUT as with most patients, we just trust our docs.

Getting your op report and your doc's notes should be no problem at all.  Just get them from the hospital records office.  That is what those record clerks do all day long.  The surgical log who tells who was in the OR and if residents worked on you may be more difficult to secure. My atty got that, but Maybe a patient could request that direct.  Remember all of these are YOUR records and under the HIPPA law you have a right to them.  You may need to pay a fee, but you should be able to get them.

You are not into this land, but did you know to check the number of law suits and to actually see copies of the law suits and even GET copies of lawsuits on docs, all you have to do is go to the civil superior court clerks office of the court house in the city where the doc practices, ask the clerk to look up law suits on a doc. if you want to see them and read them, the clerk brings them all out for you.  You can even get copies for a fee.  Had I known this prior to my original surgery which almost cost me my life and necessitated the ileostomy, I would not have gone down the road I did.  But who knew.  Unless of course one worked in the civil superior court clerks office.  I've learned all this the hard way.  Just for interest, go check out your surgeon in this way.

 Good luck, Rose

 


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 12/9/2010 3:53 PM (GMT -6)   
Expat: open your mouth and tell the surgeon exactly what your concerns are and how this surgery has affected your life. If this doctor is unwilling to listen to you and try and figure out how to fix this do you really wanting her touching you ever again? Perhaps you'll need to find a surgeon at a teaching hospital in order to get what you obviously feel was a botched surgery fixed.

What hospital was this surgery performed at - I think we all need to know. If you're willing to post your "worst US surgical experience ever" I think you can also let us know who we should be avoiding! :)

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 12/9/2010 3:53 PM (GMT -6)   
Expat: open your mouth and tell the surgeon exactly what your concerns are and how this surgery has affected your life. If this doctor is unwilling to listen to you and try and figure out how to fix this do you really wanting her touching you ever again? Perhaps you'll need to find a surgeon at a teaching hospital in order to get what you obviously feel was a botched surgery fixed.

What hospital was this surgery performed at - I think we all need to know. If you're willing to post your "worst US surgical experience ever" I think you can also let us know who we should be avoiding! :)

expat
New Member


Date Joined Dec 2010
Total Posts : 8
   Posted 12/9/2010 10:40 PM (GMT -6)   
Well, I got to see the surgeon and she did agree that the stoma needs fixing. She didn't need persuading, she basically agreed that it is not suitable for a permanent stoma. So I guess that makes her one of the good guys after all. Unfortunately I will have to wait a few months for the scarring to heal, and in the meantime it hurts like crazy because I cannot keep the skin protected at the place where the stoma empties right onto my skin. Any tips on that would be appreciated. She has promised to give me the stoma that I want as soon as she can separate the stoma and pull more through. So now I just wait.

I still don't know why it ended up so badly done. This ought to be the easy bit really and she could not offer any explanation as to what went wrong. Just that was not the way it was formed in surgery. I did some research on this and I am wondering if she just didn't mobilize enough bowel in the first place. If that is the case then she should get it right next time, but if there is another underlying problem then I think we need to know before I get a repeat of the same. Maybe it will be hard to get a straight answer since she may be concerned that I will hold her liable. The shame is that all I want is an honest answer and reassurance that it wont happen again. I could approach a different doctor but how do I know if they would be any better ?

I guess a lot of this boils down to how things are done differently in different countries. I don't know how to guarantee a good doctor here because I don't have a clue who they answer to and who rates them. So I will have to trust her a 2nd time and hope it works out for the best.

As for my 'worst hospital experience ever', would members like to know what went wrong and how I compared this to my previous surgeries ? I am happy to complain here but not so sure I should mention names since I am sure that is not allowed on these forums.

Thanks for all the advice so far. The records department at the hospital was very helpful and with the information from Rose and 'still a lot to learn' I knew exactly what to ask for.

Best Wishes.
Expat

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/11/2010 6:11 AM (GMT -6)   
Hi Expat,

So your surgeon can be dealt with this is a good thing. However, you need to talk with her further about what went wrong and how to not have that happen again. Redoing a stoma is not simple. As you said mobilizing enough intestine is very important. Also here are some things to ask about:

1. To prevent a prolapse of the stoma, the facia needs to be opened ecough but not too much. On my stoma op report it said because I had very little body fat and narrow intestines to begin with, that my stoma surgeon only removed a skin disk one and a half finger breadths in diameter. This guy was good and I got a good stoma, so I guess this op report statement was important.

2. Also they have to have the skin not so tight around the stoma and have enough mobilized to retain good blood flow to the stoma so necrosis does not happen. That is when blood flow is compromised and the thing turns black and ceases to work. You want to be sure this does not happen.

3. Also be sure the stoma nurse marks possible spots on you where you have no previous scars, where your abdomen does not bend and where clothes will not rub on you. They usually have you sit, stand, bend, and twist and observe where to mark you best.

Just some things to speak with your surgeon about. Good LUck, Rosemary

expat
New Member


Date Joined Dec 2010
Total Posts : 8
   Posted 12/13/2010 2:48 PM (GMT -6)   
Hi Rose

Thanks for those tips. I agree that I really have to pin the surgeon down to find out what went wrong. I don't want it to happen a second time. I also thought that redoing a stoma would not be simple, but the doctor said it would be a 20 minute procedure if I wait long enough for the scars to heal. I hope it is not 'over confidence' that has led to these problems !

I am seeing a local stoma nurse in a few days to see if she can help me manage my 'problem' for the next few months. I am in a lot of pain around the stoma because I am not able to protect the skin adequately -- so I don't sleep at night and I am not gaining weight. I feel very stressed by the whole thing. I hope the nurse will have some useful advice. I am especially interested to hear what she thinks went wrong and how I can make sure of a better outcome next time. I will mention the tips you sent to me.

I wonder if there has been a poll on this website about how much everyone's stomas protrude from the body. It would be handy to have an idea of what works best !

Good luck to you too with all your problems. I do hope you get the answers you are looking for.

Expat

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/13/2010 3:07 PM (GMT -6)   

Hi Expat,

Ask your surgeon what this 20 minute procedure would be.  I do know that there is one procedure that is simple, and the other stoma "re-do" is major surgery.  I can't recall which is which, but your symptoms sound more like the major surgery re-do.  So get some details on this. 

I was just thinking of you the other night for some reason and I had this eerie feeling that you may be dealing with one of the 11 docs I dealt with in my nationwide search for help.  I know you don't wish to name names and I think it best not to for negative things,  but Do you by any chance live in Massachusetts?

If you live in Massachusetts or anywhere near it, I would highly recommend a second opinion on the re-do and what you need done from Peter Marcello, MD or Patricia Roberts MD at the Lahey Clinic in Burlington, MA.  Dr. John Coller was the one who saved my life even if that meant having a permanent ileostomy and he did what no other surgeon nationwide would do because my injuries were so severe.  But he has since retired.  You can Google Lahey Clinic then when you get to their web site, type in Rosemary Jablonski in the tiny search box at the top of their home page.  Then click on doner reports or words to that effect.  Then scroll and you will see pictures of me back traveling, my life's passion.  There are no guarantees, but it has been 3 years, 4 months and so far so good.

Lahey is not well publicized as are the Boston hospitals, but Lahey seems to be on the leading edge in so many fields, Gut stuff being one of them.  I think positive recommendations are allowed on this forum, so check these people out after you get some more info from your current surgeon. 

Rose


expat
New Member


Date Joined Dec 2010
Total Posts : 8
   Posted 12/20/2010 12:33 PM (GMT -6)   
Hi Rose

Sorry I didn't reply to your message sooner. I have been busy trying to see other medical people to get help with my situation. The stoma nurse could not offer much help -- she thinks a revision is the only option. My GI doc now knows all that has happened and he was horrified -- he feels the surgery was botched and will support me in any way I need till everything is resolved. I have an appointment for a second opinion from another colon and rectal surgeon -- but I have to wait till January to see him. And in the meantime I am very depressed about how much I am having to suffer every day. I had a great quality of life before the surgery, but now I cannot even load my dish washer or play with my child -- if I bend over I get awful pain around the stoma area and have to lay down till it passes or change my wafer to get some relief !

Thanks for the tip about the Lahey Clinic. It looks a great place as does Massachusetts. Unfortunately I am far from there and my insurance only covers doctors in my State. So I have very limited choice ! How many States did you visit in your search for help ?

I am seeing the doctor again today since the vaginal discharge I have been getting is now worse than ever -- just to add to everything ! I don't want any more 'wait and see' on this because it is like being incontinent and I am worried I have an infection. I did get my operative report to see if I could make any sense of all this and discovered that there was an abnormal instrument count at the time of closing. Apparently they took an x-ray and couldn't find anything. And that is all it says about the missing item. I cannot believe that! Either the instrument was in the room or in me -- it cannot disappear. It doesn't name the instrument so I hope to find out about that mess too today.

You previously mentioned that there is also a 'surgical log'. Can you please let me know how I could get hold of that. It wasn't offered as part of my record but I would like to see that log since it might offer some more clues as to how this easy surgery could end up going so bad.

I hope you have a nice Christmas.
Expat

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/20/2010 3:07 PM (GMT -6)   

Hi Expat,

Oh Lord!  Get the patient advocate at the hospital that did the botch to track down the missing instrument.  Remember not all are metal, some are plastic and do not show up on xray.  Perhaps they left something in you.  Also call your second consult and ask if there is any possibility of being seen sooner and give a brief scenario of your situation.  Simply bypass the secretary and ask to speak with the office manager.  If you just present your case in a matter-of-fact way, I think you may be able to get in sooner.  Another Idea is a one-page fax sent ahead to the surgical consulting surgeon with your number where he can call you back.  Some docs really do call backs.  But remember, keep your fax short and factual.

I saw 11 docs at 7 hospitals over 13 months.  Most were in Mass,  one by telephone and mail consult in NY, one the same way in Germany, and several in Minnesota at a major medical clinic where the problem was found, but I was told to keep using my nutrition port (which I never had) and that my damage was too dangerous to fix.  I was basically sent home to die.  So I revisited the most sympathetic prior consult in Mass (and the oldest most experienced doc) sent him all my records from the Minnesota Major Clinic and I was told what could be done to save me.  AND I got a good, so far, functioning stoma with return of life (albeit altered), with instrument count correct.

Good luck.  Hope your holidays are as good as can be.  Rosemary


expat
New Member


Date Joined Dec 2010
Total Posts : 8
   Posted 12/20/2010 9:36 PM (GMT -6)   
Hi Rose

Well I saw the doc today about my various problems and I am starting to be reassured about the missing object. Apparently they used an alternate instrument than was originally planned (a smaller version of some very big things) and then there was a change of shift for the nurses during my surgery. The second nurse couldn't account for the instruments and the surgeon apparently showed her the 'big' unused items but she was not happy so they did an x-ray just to prove there was nothing left behind. The doctor said it was too big to fit inside of me but they did the x-ray to satisfy the nurse. So I guess that is resolved !

I do still plan to get the second opinion about the stoma fix in particular. At this point my confidence is still low and there is nothing to lose in hearing another view. Maybe the 2nd one will say the same as the 1st and I will be reassured. In a way I hope so since then the fix would be simple. I still haven't got an answer as to how it ended up so badly formed and that makes me nervous. I really don't want another 3 months to wait if the problem repeats. I have to suffer a lot of pain each day and I am struggling just to get to the end of this current wait.

I have to say that listening to the story of what you have been through is very humbling. You were very brave in the face of great adversity and I am so glad that you have a 'life' again. Whoever caused your suffering in the first place has a lot to answer for ! Thank goodness for the doctor who saved you. Why would none of the other doctors even try to help you ?

Good luck to you too.
Expat

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/21/2010 9:21 AM (GMT -6)   

Hi Expat,

Glad the missing instrument thing was resolved to your satisfaction.

The reason no other doc would help me were 2 reasons.  There is this thing called "The White Wall of Silence."  It is when one doc makes a serious error other docs don't want to address it.  Because in addressing it, it admits an error was made.  Docs have a bond to eachother that is as strong as a mother-child bond.  I do not know why as they break their hypocratic oath in doing so.  Second reason is is that releasing my small intestine from inches of dense scar tissue was extremely dangerous.  This situation is akin to pulling a garden hose out of concrete.  It's apt to rip.  AND this did actually happen when the doc who fixed me the best that could be done did extricate my small intestine from dense scar tissue.  My small intestine did rip.  Luckily for me this doc was VERY experienced and caught the rip and sewed it up before any small bowel contents were spilled.  Had he not been as quick or experienced, I would have gotten peritonitis.  As it was I did have one month of NG tubes and ileus where the small bowel does not wake up, but it was just due to all the trauma it encountered during this needed surgery and it eventually did wake up.  This doc also used Seprafilm adhesion barrier to reduce the density and number of new adhesions that would form (see, each surgery creates adhesions).  He did have a plastic surgeon assist him which was the right thing to do as plastic surgeons are experienced in this sort of thing.

When I awoke this surgeon was bending over me saying THis was a very difficult surgery but I did what I needed to do.  You should be fine.  (There are no guarantees, each day is a gift, that is why I am doing extensive, non-stop travel.)  Only two months after this needed surgery this doc who saved my life had to stop doing major surgeries as he himself is an older man and 4 hour surgeries was getting to his back.  He said I got into his op schedule right under the wire.  I send this man post cards from all my travels and he is thrilled.  I really believe he is an angel sent from God in the form of a doctor.  I sure hope his skill and my luck hold and I never have another adhesion reobstruction as I have not had since Aug. 2007 when he did this surgery.  I'm 3 and a half years out.

Regarding the original surgeons, most of their victims of which I later found out there are about a dozen most of whom died and did not find the help persist in doing what they did to me.  I am in litigation with them as are the survivors of many of their other deceased plaintiffs.  Turns out they do procedures for dollars.  Get sued continuously and still they "practice on" with no follow-up to complications.  The reason their malpractice insurance carrier does not drop them is that in our state, as far as I've learned, docs are all insured by this umbrella insurance.  That means that the good docs like the one who saved me have insurance rates that rise to cover the bad docs who are sued over and over.  Hardly fair huh?

It took me a year to get my life saved, 2 years to learn the anatomy to assemble my suit and a year to find an atty who had been a surgeon who understood my case.  It is now in discovery phase with depositions, etc.  BUT no amount of money will get my original body back for me.  BUT, at least I'm not disappearing without a trace if I do eventually succumb to complications from this.  In the meantime, I'm doing my best as an ileostomate to enjoy world travel, my life's passion.  My world cruise in 2009 was the highlight of my life.

I see life so much differently than others who have not been down my road do.  It is the ultimate "Don't sweat the small stuff."  When I hear people complaining of a chipped finger nail, I just do a big eye roll in my mind and think, they don't have a clue.  Not their fault, just as it is.

I do want to write a patient advocacy book as my contribution to society, but if I win my suit I'm sure it will come with a huge Gag Order.  Wishing you well.  Rosemary

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