OT-collecting pee and any ideas for talking to a cocky surgeon?

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yogaprof
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   Posted 11/18/2007 2:20 PM (GMT -7)   
I just had to share that my GI has had this idea of having me tested for prophyria, so I have to collect my urine for 24 hours. what a hassle! also, I will see my surgeon in a week to discuss surgery again. I went to this guy a year ago and he cut my colon away from the inside wall of me by cutting the adhesions. It appears the adhesions were never all cut and probably some has come back. I am trying to decide how to deal with the surgeon. he is younger than me and the hotshot of our town...the surgeon all the docs say is the man. however, when I met with him last year he kept saying "first I have to decide if you are crazy," and "well, you don't seem to be crazy," etc. Now I am a middle aged, professional, bright woman--it feels quite insulting to be talked to like that. any ideas of how to stop him without insulting him?
thanks, yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


gachrons
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Date Joined Mar 2007
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   Posted 11/18/2007 2:39 PM (GMT -7)   
Hi I guess if it were me I would just say that I take my disease on a serious side because of my medical problems. I am guessing that he is a skilled DR. or you wouldn't be going to him.I guess maybe it is his way of saying that he needs to comfirm your DX, It wouldn't be good for him to operate on someone who doesn't have problems. Are you certain that you are going to have more surgery yet? Wishing the Best for you .lol gail

ski bum
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Date Joined Jan 2007
Total Posts : 451
   Posted 11/18/2007 3:26 PM (GMT -7)   
I deal with all specialties of physicians because of my job, and general surgeons tend to be the most arrogant of the lot. Not all surgeons, of course, are arrogant, but in my experience, they are the ones I have the hardest time getting a hold of and are the most difficult to communicate with. I find the best way to deal with them is to be knowledgeable, prepared and understanding of their stressful and time intensive profession. So when you speak with your hot shot surgeon, have all your questions prepared and keep asking them, until your questions are answered. He may have one hand on the door knob, which is kind of intimidating, but don't relent. If I don't have a cheat cheat with my questions written down, I get intimidated by the physician's impatience, and forget what I wanted to ask. So just be prepared and don't be intimidated. If you feel he's insulting you, I'd tell him. Surgeons may be arrogant, but they're also very honest. They see things black and white (I know I'm way overgeneralizing here, but I'm just speaking from my experience), so it's better to let him know if you think he's off base, and he'll probably respect you for that. Good luck!
CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira, Imuran and Entorcort. Hope to dc Imuran and Entorcort within one month of starting Humira.


teddybearweiser
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Date Joined Oct 2004
Total Posts : 3042
   Posted 11/18/2007 3:43 PM (GMT -7)   
Hi, I recommened getting a new surgeon. This guy you have sounds like a total jerk. I would
never let him cut on me for anything.
TBW
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


Sarita
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   Posted 11/18/2007 4:04 PM (GMT -7)   

I can't stand these type of docs, I'm in school with a bunch of surgical wannabes who sound exactly like this guy.  And you know what I say to them?  I say, "You might be a wonderful surgeon one day.  It's really too bad that you won't have any patients because you're such an egomaniacal jerk." Jeez louise.  I don't think I've actually said that, but I wouldn't put it past me.

Anyway, if the guy's a great surgeon and just a stupid person, you might want to keep him as a surgeon but write him a letter.  Say, "You know, I think you're a great surgeon, I'm sure you had a 4.0 in medical school and you did your first appendectomy when you were 12.  As much as I appreciate your knowledge, I do believe you could benefit tremendously from some improved patient interaction skills.  I was deeply offended by your comments X, Y, Z and hope that you can understand why such comments were inappropriate." Be nice and gracious and the bigger person in your letter, but don't let him get away with that kind of behavior.

If he does not respond or bring it up at your next visit, you should think twice about this guy. 

BTW, they should have checked you for porphyria long ago!  Who are these lame-os?  If you have any questions about porphyria, let me know, I spent about 293847 hours trying to understand the various forms of it.


Co-moderator - IBS Forum


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/18/2007 4:09 PM (GMT -7)   
humm...you want to keep this person as a Dr? Even with his lack of smooth??????
Forum Moderator 
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...


JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted 11/18/2007 4:47 PM (GMT -7)   
Yogaprof,

Yeah, 24 hour urines are really fun aren't they? The container they gave me had an opening about the size of a mens urinal. I ended up using one of those throw away type tupperware's that fit perfectly on top of my toilet seat, and then poured it in the container they gave me. I kept it in paper bag in my refrigerator because it grossed me out looking at it in there, lol.

I'm not sure what prophyria is even after looking it up, but I sure hope you don't have it.

about your adhesions, it's very possible that all of them were cut but they adhered again. Unfortunately that's the nature of adhesions. If you have surgery to fix them, it can make them worse.

As far as the surgeon, why on earth would he say those things to you? Was it his lame attempt at humor? Only you can decide if he's a good enough surgeon to put up with his attitude. If you decide to keep him, maybe come up with something to say in return, like how you don't get to look at his records to see if he's crazy.

My first surgeon was not a very nice person, rude, full of himself, but I was told he was the best and my sugery went smoothly as did my recovery. My last surgeon was pretty full of himself, but not really rude, but I will never go back to him because I wasn't happy with the way my surgery/recovery (and his attitude about it) went. So choose your surgeon based on skill, forget the personality, you'll be out most of the time anyway, lol.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


dunny2
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Date Joined Jan 2007
Total Posts : 3200
   Posted 11/18/2007 5:32 PM (GMT -7)   
You know what I think is a shame, they seem to forget they're station, they work for us, not the other way around.
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/18/2007 5:47 PM (GMT -7)   
wow, lots of wonderful responses; that is why I love this place!
I know nothing about prophyria, and reading on line hasn't helped at all, so if it ends up that I have it, I will certainly be asking lots of questions, sarita! my doc actually wanted to test me a long time ago, but the test seemed like such a pain I just...didn't do it. I love having a jug of pee in the fridge, good grief what next?
I appreciate your surgeon comments. I will be very prepared and I am not gonna listen to the word crazy again this time; really, he said it probably 8 times. I don't come across as crazy, I am always so calm and intellegent with docs, I am going to see how it goes, but what a jerk. plus my GI is sure he left adhesions last time, as the pain never did go away and yes, I know with each surgery it can cause more adhesions. what a bad cycle to be in.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 11/18/2007 9:57 PM (GMT -7)   

Yoga,

They may be thinking of "acute intermittent porphyria" in your case.  The brief version is: the disease can cause intermittent severe abdominal pain, constipation, and some neurological symptoms, among other things.  It's pretty rare, which is why you've never been tested for it before.  It's actually the result of a mutated gene that codes for a particular enzyme called "porphobilinogen deaminase" (that's just an FYI - all these enzymes have insane names). 

The gene mutation is inherited, but not all people with the defective gene end up having the disorder.  Essentially, you have to have a certain "amount" of mutation in order to manifest symptoms of the disease, and the weird thing is that the symptoms occur primarily in the adult stage (post-puberty, anyway). 

If they ordered the 24-hour urine, make sure that they include "urine porphyrins" in that test.  I'm sure they did, especially if they brought up porphyria during your exam, but make sure you get copies of your lab results.

It's a difficult disorder to understand and, I have to reiterate, is pretty rare indeed.  Lemme know if you have more detailed questions about it, I'll try to answer them as best I can...


Co-moderator - IBS Forum


Marie-Claire
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Date Joined Mar 2007
Total Posts : 900
   Posted 11/19/2007 2:12 AM (GMT -7)   
about these surgeons who have no bed side manner whatsoever......I think they choose surgery so they won't actually have to talk to anybody..much. If they were able to empathize and relate on a human level, they might have chosen family practice. I think these guys are brilliant , but have NO social skills as a result of years of study, or not knowing how to make friends in the first place , they buried themselves in books. They may be geniuses in the OR but extremely stunted in communication and human relation skills.
I would just be frank...and say..." I respect that you are the best in your field , but I don't deserve to be spoken to in this way. I may not be a surgeon but I am a person with an education who is deserving of the same respect I give you. "
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 11/19/2007 7:55 AM (GMT -7)   
very well said, Marieclaire,I am going to say exactly that.
and thanks for the info Sarita. I wonder how long the urine test results will take.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 11/19/2007 7:57 AM (GMT -7)   
Yoga, definatly speak up. The doc may think he is being funny. I've had a lot of docs joke w/ me; some were funny, some weren't. After tons of bad headachees from a ski injury (sans helmet) I finally had a cat scan done. The doctor looked at the screen and said "yup, there IS a brain in there." I laughed so hard I almost fell off the table. Another time I was in the hospital for a day and desperatly needed fluids. I didn't know I had crohns at the time. He pretended to "forget" if the blue thermometer was the oral or the rectal one or if it was the red. At that point, I didn't want to laugh, I could care less, and just opened my mouth. Then he kept joking with my boyfriend that he would make sure I wasn't pregnant first and foremost. Neither of us were laughing. Overall though, I got good care from him, he was just a poor comic and it was hard to tell if he was joking or not.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


jdiane
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Date Joined Jan 2003
Total Posts : 1131
   Posted 11/19/2007 8:44 AM (GMT -7)   
Agreed with comments above. A lot of surgeons a real jack*sses, but they are very honest and I've found that they can appreciate when you are the same way with them. I would speak up and hold your ground. Also, is this guy a colo-rectal surgeon? I wouldn't dream of having a general surgeon cutting away at my colon..... just a thought.
 
 


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 11/19/2007 10:32 AM (GMT -7)   
he is a general surgeon, but his expertise is in laparoscopies...he can pretty much do brain surgery through the belly button :) he won't be cutting through the colon, just cutting adhesions (hopefully)
this has really been a help. I needed to feel a bit "pumped up" to deal with him again. now I have to decide whether to go through it all again or just pop vicadin for a while.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 11/19/2007 10:39 AM (GMT -7)   
A reminder, you are seeking his surgical services, not paying to see a comedy show or even a philosophy lecture. Might do well to remind him of that. It's a good thing he's a good surgeon because he'd never make it in this world on the basis of his personality
Belleenstein:

30+ years living with Crohn's.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/19/2007 11:02 AM (GMT -7)   
The remark he made to you about "being crazy" may just be his dry sense of humor, that doesn't mean he's not a great surgeon, not everyone has "the whole package", his personality may be lacking the way he comes across but he may very well be excellent at what he does.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


gemini kiwi
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Date Joined Nov 2006
Total Posts : 1136
   Posted 11/19/2007 11:19 AM (GMT -7)   
I would have interpreted his comments to you as more or less saying "its all in your head." What an arrogant tosser.
Tess

Poopington McToot
Regular Member


Date Joined Jul 2005
Total Posts : 315
   Posted 11/19/2007 12:45 PM (GMT -7)   

IMHO,

I'll take the arrogant surgeon that's being recommended to me by other physicians.  You don't want somebody cutting you open and then second-guessing themselves (even if they did stay at a Holiday Inn Express last night).

BTW Judy, remind me never to come over to your house for dinner and leave with leftovers.  I had to laugh b/c I've done some pretty disgusting things with food storage containers.

Poopington McToot


It's easy to grin, when your ship comes in...and you've got the stock market beat.  But the man worthwhile, is the man who can smile, when his shorts are too tight in the seat.


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 11/19/2007 1:18 PM (GMT -7)   
yes, it was very much a "I am deciding if this is all in your head." and yes, I over looked the arrogance because of his reputation, but sheesh!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


rootsmith
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Date Joined Jan 2004
Total Posts : 598
   Posted 11/19/2007 2:48 PM (GMT -7)   
My last pcp (who was about my age) used to call me "sweetie" i.e. "Hi sweetie, what can I do for you today?" Or sometimes "hon" (short for honey) Ok, I know that some people do use these words to address women but it seemed very dumb to me especially someone who came of age the same time I did and should know that this is not appropriate anymore. My next pcp, a young man, addressed me as "Mrs" which was almost as bad.

Yogaprof, I was tested for porphyria once also so it is not that off the wall. It was the above pcp who is known to be very smart. He said that anyone with undiagnosed abdominal pain and neurological symptoms should be tested for that. Often vomiting goes along with it (saw that on Marcus Welby once) but he said not necessarily.

I had two laparoscopies for adhesions and would love to know what is going on inside me right now. In the first one, done by my ob-gyn who had an excellent reputation as a surgeon, he left all the adhesions on the left side because he felt that they had been there forever (probably right) and were not causing problems. he did remove one that was tieing my ileum to my front abdominal wall and after that lap my pain was gone for 3 months. I had another lap done by a general surgeon 6 months later and when he went in, planning to leave the adhesions on the left side alone again, he found that the adhesion on the right had not reformed, yet I still had the same pain. So he started on the left side, releasing my colon. I'm fairly sure my sigmoid colon (which was stuck to my right pelvic wall) is still in the correct place (left side) because I could feel the miralax for my last colonoscopy chugging across the top of my abdomen and down the left side and then across to my middle. I had no bowel function abnormalities at the time of the laparoscopies despite these massive adhesions.

I wonder if a nerve could be trapped?
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/20/2007 10:27 AM (GMT -7)   
hey Root, thanks for your comments. this is the only place I can talk to folks who have dealt with adhesions. I had the same experience with my OBGYN doing a lap and seeing adhesions and leaving them...now I have to decide if it is worth a third shot to see if there are more or just new ones.
you mentioned nerve problems. my PCP put me on lyrica (nerve-pain med) to see if it would help, and it didn't do away with the pain, but helped a bit.
you mentioned the pain being gone for 3 months, my hotshot surgeon said last time "I am not doing this again in three months." perhaps that is all we can ask for in pain relief?? yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


rootsmith
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Date Joined Jan 2004
Total Posts : 598
   Posted 11/20/2007 12:14 PM (GMT -7)   
In my case, I don't think my pain was caused by my adhesions. I believe the left sided adhesions had been present since the early 1970's when I had a work up for infertility. The xrays, even though they can't show adhesions, suggested them- they could tell that there was a mat of "something" on that side. I was scheduled for surgery by my ob-gyn but apparently the dye flushed my tubes and I became pregnant first, the surgery was cancelled and I never did find out what was going on. Then in 1986 I had a hysterectomy and my ob-gyn said there was signs of "old endometriosis" He didn't say anything about my left side being such a mess. So, these left sided adhesions might have been present just from 1986, as a result of the hysterectomy. All during these many years I had no unusual abdominal pain. This is why I don't think my left sided adhesions were responsible for my pain. This doesn't mean that your pain isn't related to your adhesions though. And again in my case, I had the pain return 3 months after the first lap, never had any more laps done, take pentasa and the pain is gone. (I also got relief from various meds like tricyclic antidepressants and also flexeril. Both of these drugs also work on pain transmission besides their other mechanism of action)

The ob-gyn who did the first lap never did believe I had a gyn problem. He told me right away that he thought it was probably crohn's but after 9 months agreed to do a lap and then when he saw the right sided adhesion tieing my intestine like a sausage he though well, maybe, worked on that one but left the others alone. He was present at the second lap, said he wanted to see for himself what had happened in the meantime. Not long after that he died.

In your case, I still can't understand why all your tests showed crohn's the first time if it isn't crohn's. I know how frustrating this must be for you.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft

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