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Posted 6/12/2012 3:49 AM (GMT 0)
Surgeon said I was a perfect candidate, then the GI doc sends a note to surgeon telling her not to do the surgery. I was set for surgery on the 25th now it is canceled. I am now going to the Mayo Clinic on the 18th. Will Mayo clinic be as indecisive?
Posted 6/12/2012 11:56 AM (GMT 0)
Did you find out the details on the reasoning behind the decision?
Posted 6/12/2012 1:52 PM (GMT 0)
The longer you keep your colon, the more options you still have.
Best of luck!
Posted 6/12/2012 2:00 PM (GMT 0)
I think if you go to Mayo without understanding your GI' reservations - whether you agree r disagree - you are going to Mayo partly in the dark. This increases the chances that you do not get the best care for you.
Posted 6/12/2012 2:19 PM (GMT 0)
Only YOU should be making that descison not your GI. What was the reason?? You all need to get on the same page one way or another as it sounds like you are in the dark. Is the Mayo clinic your second opinion?
Posted 6/12/2012 2:23 PM (GMT 0)
This makes no sense to me. It's not up to the GI to decide whether or not you can have surgery; it's up to the surgeon. Good to hear you are going to the Mayo.

Sue
Posted 6/12/2012 2:29 PM (GMT 0)
I agree you are the patient not the GI. It is your choice.
Posted 6/12/2012 5:33 PM (GMT 0)
surgeons think everyone is a good candidate. We are the nail-the surgeon is the hammer.
Thats something that really bothered me about my hospitalization, the surgeon told a completely different story about post-op than the GI did. He kept telling me how I could eat chicken wings again ( I don't even like chicken wings) and the GI was telling me the statistics of complications, etc,
After doing a lot of research, I found that the GI was spot-on.
Posted 6/12/2012 6:54 PM (GMT 0)
I had this happen a couple of years ago.  After a three-year-long flare, I was ready for surgery.  The GI disagreed but referred me to a surgeon; then the GI got into a pissing match with the surgeon who thought surgery was a good idea.  In that hospital system, the GI had more clout.

Since then, I've only seen GIs at IBD clinics/ centers where GI medicine and surgery are integrated, and they have a much more open approach to letting patients decide for themselves.  I suspect that Mayo operates in much the same way.

 

Posted 6/12/2012 7:22 PM (GMT 0)
I had an obstructed bowl a few months ago that was completely unrelated with my colitis, It was in the small intestine. I went to the ER for it and was subsequently hospitalized for three days.

While I was in the ER, they gave me a morphine drip, and I was pretty much out of it. So there I was; in serious pain, mild shock and high on narcotics, and the surgery resident was trying to talk me into giving up my colon.

After I recovered a bit, and began to realize what went down, I was P.O.ed in the extreme, and lodged a complaint with the Chief of abdominal Surgery. Not only was her recommendation contraindicated, as I had been in remission for more than two years, but her timing was atrocious.

Bottom line; beware of surgeons, they’re knife happy!
Posted 6/12/2012 8:48 PM (GMT 0)
     Well, I suppose I am not the norm here.   I consulted a surgeon shortly after my discharge from the hospital for a severe flare and uncontrolled high BP due to prednisone, back in 2008.  He did NOT suggest surgery at all.  He told me if I had surgery I would be going to the bathroom 8 - 10 times a day, which was more than I was going at the time!  Long story short, he scared the beJesus out of me regarding surgery.  I must admit I was not aware of the types of surgery for my condition, ulcerative proctitis.  Now I know that he was talking about the j-pouch, but he failed to mention a total colectomy with end ileostomy.  Maybe people just cringe when they think of wearing a "bag" for the rest of their lives.

     I went back to my GI doctor without telling him I consulted with the surgeon because, knowing him, he would have one of his hissy fits.  So, for the next two years, I trudged along, taking my myriad of meds....6MP, prednisone (could just not get off that without a major flare), rectal meds, probiotics, not to mention BP meds (3 and still not under control) and Medformin for the diabetes I now had because of the prednisone.  All together 17 - 25 pills daily and still as sick as a dog.  I let the GI doctor talk me into Remicade.  Ok...felt terrific after my first infusion.  That didn't last long.  After the 3rd infusion all my symptoms returned.  Then my GI doctor mentioned surgery with a smirk on his face.  I said..."Yep, I am ready doc."  He was horrified...."Oh, no, no...I am just joking Chris...there are more things to try out there."  Ok...I gave Humira a shot....after three months, no change.  My GI doctor refused to send me to a surgeon.  After all...there was still Cimzia and then Orensia...etc.  Forget it.  I looked up a colorectal surgeon online in the Philadelphia area.  Dr. Fry is head of colorectal surgery at Pa Hospital.   He did NOT push me into surgery.  He read my hospital records and tons of reports I was able to get from my GI doctor's nurse.  He explained that I was not a candidate for j-pouch because of my deteriorating health.   I told him I did not care if I had to wear a "bag", I just wanted my life back.  I was 63 yrs old but felt like 93.  He would not operate unless I passed a stress echocardiogram, which I did.  After the operation, he told me my rectum was badly diseased (not surprised).

     I never returned to my former GI doctor.  I will be 66 this August and with the exception of full blown osteoporosis (thanks to prednisone), my health is great.  My blood pressure is easily controlled with only one pill a day and that is my ONLY pill.

     Suebear told me something a few years back which jarred me.  She said my GI doctor was NOT my advocate...and he sure as heck was NOT.

     Sorry this is so long.  But, I firmly believe that many (not all) GI doctors just want to line their pockets at the expense of their patients health.  The two colorectal surgeons I consulted certainly did not push me into surgery.  It was totally my decision, but it was the best decision I ever made regarding my health.

Posted 6/12/2012 9:06 PM (GMT 0)
Like Christine I guess I'm not the norm either. The first two GI doctors I saw did nothing for me. And they certainly didnt have my best interest at heart. My third GI doctor hugged me in her office when I had exhausted all my options and she referred me to an excellent colorectal surgeon. I met with my surgeon and "interviewed" him and he was in no way pushy at all. He gave me the facts....and he never sugar coated it....and I made my own decision based on those facts and how my quality of life was at the time.

You cant lump all surgeons together as knife happy anymore than you can lump all doctors together. There are good ones and bad ones.
Posted 6/13/2012 4:25 AM (GMT 0)
I don't think it is true that surgeons are knife happy. Surgeons are trained to treat with surgery, but they aren't just gonna do surgery on someone for no reason! If someonee goes to them and says, I have had uc for three days now I want surgery. They are gonna refer you to a gi and have you get some more information.
Qsam is it possible your gi office found out your insurance wouldn't cover? Or if you've been on prednisone a long time its advised to try to come off before surgery. Maybe your gi wanted to try to deal with that first?
However, if you've made the decision and those things don't apply then it makes no sense why the gi would do that, its really your decision.
Posted 6/13/2012 8:21 AM (GMT 0)
Christine 1947, it sounds like you had the same situation I'm having. Sorry for not getting back to everyone sooner, I have had one doctors appointment after another and the medications are knocking me out. I'll give more details of my situation. I was diagnosed with UC in March 2004, between 2009 and 2010 I was hospitalized 5 times for severe flares I have been on 40+ mg of prednisone a day since May 2007, it is causing a lot of complications, such as blood sugar, blood pressure, osteopenia etc. I have had limited control of my bowels since May of 2007, I've soiled myself more times than I can remember, I always get C-Diff or have to take an anti-biotic for something which makes me have no control of my bowels. I haven't had any control since May 3rd. about 6 months ago GI doc starts Remicade, things improve somewhat, I then have limited control of bowels, still having good days and bag days. GI doc insist that the Remicade is working, I would agree that it improved things, but not working enough so I have a life. So to make a long story short, my GI doc believes the Remicade is working. Friday I called her office and nearly broke down in tears telling her nurse how I am on FMLA and my employer does not have to hold my job after 90 days, described in great detail how much pain there is in my colon and back, what it is like to soil a diaper, and how embarrassing it is to continuously soil myself in front of my co-workers. The nurse calls back after talking to GI doc, the response was "call us if things improve or get worse", I didn't say it, but how can they get any worse. I ask the surgeon that canceled the surgery if my GI doc had forwarded her my 8 years of medical records, she never responded, just changed the subject. To those that asked about my insurance, I verify it myself before hand, so I was good to go. My last hope is with the Mayo Clinic, just hope all my medical records arrive in time. I was going to push date of appointment back to insure they have my entire 8 year history but I am in too much pain and soiling myself too much to wait. Plus, I need to be able to give my employer some answers, such as will he ever have control of his bowels again! I don't even care if I have to have a colostomy bag, at least I can work and do things again.
Posted 6/13/2012 8:29 AM (GMT 0)
seconder,
I must be using the same hospital system that you once did...lol That is exactly what is happening here, the GI doc contacted my PC, endocrinologist, and surgeon telling them how she wanted things done, she didn't even consult with me. I've only seen my GI doc for about 2 minutes in the past 8 months and that was right before a colonoscopy. I repeatedly request to come to the office and I've only been allowed to go twice and that was to talk with the NP. Everything else is relayed between me and the nurse, by phone!
Posted 6/13/2012 8:57 AM (GMT 0)
summerstorm,
My prednisone usage was of concern to the surgeon for J-pouch, but not ostomy. She said it could be 2 years before I could get the J-pouch because of the complications that could come about because of the prednisone. I had no problems with getting an astomy. I told her I was willing to take any risk!

Post Edited (qsam6) : 6/13/2012 3:37:04 AM (GMT-6)

Posted 6/13/2012 11:37 AM (GMT 0)
Yes, qsam, that does sound familiar, though you've had a tougher row to hoe.  It doesn't sound like your GI understands IBD or cares very much for your QOL. 

My GI went behind my back and wrote letters to all my other docs insisting that I be on Remicade.  He clearly didn't anticipate my reaction to that, though, and was caught off guard when I outlined his standard of care and cc-ed his colleagues accusing him of acting in bad faith.  I insisted he refund the insurance company for the surgery consult, which he eventually did.  My GP (different system) and I still have a good laugh about it.

I think you've figured out that you need new docs.  I hope you find the Mayo receptive to your needs and that everything works out for you.

Posted 6/13/2012 11:50 AM (GMT 0)
qsam

Are you in the US? You have the absolute right to have copies of all your medical records given to you on request. Some doctors charge a copy fee but none of mine ever did. I ask for copies every time I have a blood test, c-scope or anything else. The only ones I don't have right now are the notes my doctor may have scribbled on their copy at my appointments but I would have a right to them also.

This way when I go to see a new doctor I hand them my history, they copy it (if I didn't make a copy already) and hand it back. Saves a LOT of time as well as not duplicating blood tests, etc.

I wish you luck. You are being denied a basic right to control your own body and be a partner in your health decisions. It would make me mad as hell. Obviously you are in a time crunch but you really need to switch GI's and after you do report this one to the state medical board. Can you call your GI today and ask for copies of your records and tell them you want to pick them up right away?
Posted 6/13/2012 11:55 AM (GMT 0)
Qsam,

I can totally relate to soiling yourself. Toward the end before my surgery I had to wear Depends everyday. It messes with our mind after a while. So sorry you are dealing with this. You definately sound like a candidate for surgery. You cannot live like that. There are many people who have been on prednisone and had the j pouch surgery. They will do it in three separate steps. But opting for an ostomy will get you back on your feet quicker.

Best of luck at Mayo. :)
Posted 6/13/2012 12:32 PM (GMT 0)
I sort of think you have a potential lawsuit on your hands. Your GI shouldn't have been able to cancel the surgery. Something smells very fishy.
Posted 6/13/2012 12:35 PM (GMT 0)
Man, you guys have weird doctors in the U.S.
Posted 6/13/2012 1:08 PM (GMT 0)
To be taking prednisone daily for 5 years is negligence! Your GI is really not working in your best interest. It's not true that you cannot get a jpouch either. True, you may have to wait between surgeries for healing, but most of us with jpouches were on prednisone prior to surgery. Duh, we're sick! You really need an advocate to help you navigate through this.

One of the #1 reasons for surgery is quality of life. I think you stated very clearly to your doctor's nurse that you have no quality of life. Sounds to me like your GI is afraid of losing a patient. She should not be allowed to practice.

Sue
Posted 6/13/2012 7:24 PM (GMT 0)
imagardener2, I took your advice and contacted my GI docs office, got transferred to nurses answering machine, waiting for her to call back. I haven't requested them from her before because she has refused to send them to other physicians as I requested. If she doesn't give them to me I will file a complaint with ethics board. I am going to file complaint anyways, just trying to avoid it right now, I don't need anymore stress right now.
Posted 6/13/2012 7:42 PM (GMT 0)
Pred for 5 years straight!? Wow, you're beating records.

Pred is bad for for you but it keeps the evil U.C. at bay.
Posted 6/13/2012 8:14 PM (GMT 0)
Well, that bridge is burned forever. Nurse calls back and ask why I needed them, so I told her I was going to Mayo clinic. She put me on hold for awhile, came back and told me that I could no longer use their office. Nurse has been very nice to me, so I didn't give her a hard time, but I never give medical personnel a hard time, just seems they give me one. She immediately faxed me the medical release form. So, hoping to have all medical records tomorrow.
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