What do you do when you have a bad appointment?

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Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 3/26/2008 10:38 PM (GMT -7)   
I had probably what could be considered my worst doctors appointment to date this afternoon..
Due to where I live, my choice of doctors is beyond limited. People like GI doctors and surgeons are flown in on a rotating schedule and you don't really have the option of changing doctors if you don't really mesh with the treatment they have in mind.

Here's the post I wrote and posted on two other boards I frequent (not Crohn's related):
-----------------------------------------
Worst doctor's appointment. EVER.
*sigh*
I got one of those arrogant doctors today... Y'know the one that doesn't care what you have to say and doesn't really want your input on your own treatment. I waited an hour and a half to get in to see him and then practically as soon as he got there he started trying to rush me out the door. Thankfully I'd written down a list of things I wanted addressed and told him I wanted to talk about everything before I left. Unfortunately he had NO answers for me. I've been having dizziness/nausea, night sweats and a bunch of other things and he couldn't tell me why I was having them or which of my medications were doing it. The only time he perked up is when I told him that I've been having hip pain (and that it presented years before the intestinal symptoms).
He changed my meds. Instead of the pentasa, I'm now on salofalk. Apparently it should help with the arthritis symptoms.
So I'm going in for blood work tomorrow morning and if my ESR rate is still elevated then he wants me on prednisone ($*&*%$). I've also got a referral in for a small bowel follow through (barium & x-rays) and an MRI of my hip.
The SBFT will get me a trip to Yellowknife and the MRI will get me a trip to Edmonton. Who knows when either of those will happen though.

I am thoroughly and completely frustrated and even cried at the pharmacy when the pharmacist asked how things went (she's going to do some more research for me).

*sigh*
-----------------------------------------

Any advice?
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: 4g Pentasa (2 pills 4 times per day)
9mg Budesonide (one capsule 3 times per day for the next 6 weeks)

Pre 22/02/08: 2.4g Asacol (discontinued due to Crohn's Diagnosis)


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 3/27/2008 12:29 AM (GMT -7)   
Hi Megera,
Sounds like your doc is of the "paternalistic medicine" variety, which is, fortunately, losing favor these days in medical circles (but unfortunately, that doesn't seem to be working in your favor). One nice passive-aggressive way to deal with this would be to send him some peer-reviewed research about how detrimental this attitude can be in physicians, and how it can lead to worse outcomes for patients...I can find some for you if you want...but I digress.

Obviously you don't have much of a choice except to deal with this guy. Would it be feasible for you to see this guy for regular follow-up but then visit a major academic medical center once a year or something like that and have them work together? How do you think he'd respond if you asked him for a referral to an academic facility so you can get a more "collaborative approach" to treatment?

Hang in there; I know you're in a tough spot.
Co-moderator - IBS Forum


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 3/27/2008 8:03 AM (GMT -7)   
I don't know where you live, but if you're waiting an hour plus in the waiting room, it may be a better use of that time to spend it driving to a better doctor! I refuse to go to doctors who are not there to help me, with all I have to go through with this stupid disease, having a douche doctor is at least one thing I can control and absolutely refuse to have. I say make the trek to a better doctor- then only go to this guy in emergencies to work with your other one. It's really worth it to have a doc that cares.
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
Just started taking Humira but not feeling better yet.


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 3/27/2008 8:19 AM (GMT -7)   

Well, I had an AWFUL apointment with a surgeon two years ago. I waited 3 hours past my appointment and then he performed the most painful insensitive rectal exam possible (I had a severe fissure). It hurt so bad I kicked the nurse by reflex! Then I asked the doctor what I could take for the pain and he said ADVIL!!!!! Freaking crohn's surgeon told me to take an NSAID. I told him I couldn't because I have crohn's. He said "why not?". I asked if he thought I should have surgery, if it was bad enough, he said "I don't know, I've never had a fissure.It depends on your pain toleration".

 

How did I handle it? I cried all the way home, driving while standing and yelling "YOU STUPID MOTHER######!!!" as loud as I could until my throat was raw.

Every now and then my GI will try to refer me back to the same surgeon. NO WAY!!!!!!

 

I hope you find a good doctor. My regular GI is great.

 


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 3/27/2008 10:40 AM (GMT -7)   
Sorry your doc was so rude. just some thoughts...the night sweats might be from the Entocort, and if you have a stricture, which you may find out from the small bowel test, then it might explain the nausea. The blood work he ordered might show anemia, which would explain the dizzyness. He may be doing appropriate treatment, and ordering apppropriate tests, but there is no excuse for being a jerk. I'd agree with the above comments...if you are not comfortable with the doc and have a choice, then switch docs. Giving peer reviewed research about doc/pt relationship as Sarita mentioned would probably only inflame the situation! I hope you get some answers soon!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 3/27/2008 11:22 AM (GMT -7)   
I just might have a topper on the worst doctor category.  When I told him the symptoms I was having and I told him I thought some of them were caused my the medications (6-MP and Prednisone) he told me.  "Well, all medications have side effects, even aspirin.  You'll just have to live with them."  2 weeks later I was in the hospital, in isolation for bone marrow failure for 11 days with those same symptoms.  To say he is no longer my doctor would be an understatement.  I think he moved to Boston.   BEWARE!!!! 
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 3/27/2008 11:25 AM (GMT -7)   
Thanks everyone!

Unfortunately I live in an extremely remote and isolated place. The closest hospital by car is 16 hours away (in another Territory) so I don't really have the option to just see a different doctor in a different town/clinic or hospital. I don't mind waiting a while to see the doctor so long as they don't try to push me out the door the second I sit down! It was the pushing me out the door that pissed me off yesterday not the waiting for an hour and a half (I waited over 2 hours for my pre-op last month!).
Like I said before, specialists are flown in from out of town. I just found out today actually that the surgeon that did my colonoscopy was from Ontario!

Sarita - I'd be really interested in those articles - even if I don't send them to the doctor, it might make me feel better. There IS another GI doctor but I would either have to fly myself to see him ($1000) or wait until he is scheduled to be up here anyway. That is one of the drawbacks -medically- of living here. There are many medical positives (average ER waiting time is less than half an hour) but not having a choice in doctors is definitely a negative.

snappy - I saw a surgeon in January when I went in to the ER. He was TERRIBLE. His advice for me was: "Don't be so anxious, don't eat foods that upset your stomach and here, I'll write you an Rx for stool softeners" ?!?!?! whaaaaat?! He wanted me to wait until now to see a doctor who would do a scope. I don't think I would've made it! (I also had two rectal exams that day AND got an Rx for some cream to jam up there... $*&%($ Putting that cream up there hurt so bad - I wasn't sore before the exams - that I almost threw up! I gave up putting that cream on). geez... What is it with some doctors?!?

gumby44 - A few people (patients/Crohn's people) now have told me it's the Entocort causing the night sweats. The doctor told me he had no idea what would cause it - ?!?
The dizziness and the nausea right now are hand in hand. I get motion sickness quite easily so I'm assuming that's where the nausea is coming from. I was having nausea on it's own before I started medication though.
I'm not so much doubting that he knows what he's doing (minus not being able to figure out the side effects) so much as I'm not at all happy with his approach. He seemed nice enough until I started asking questions and showing interest in my treatment and then he went all "this is what we're going to do. THE END" on me. I saw him this morning when I went in for my blood work and he seemed cheerful enough.

I'm not even going to get into the rant I have about the lady in medical records. I almost had to fight with her to get copies of my test results today! She acted like she'd never heard of anyone EVER wanting copies of results... gahhhhhhhhhhhh...
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
9mg Budesonide (one capsule 3 times per day for the next 6 weeks)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 3/27/2008 11:28 AM (GMT -7)   
Mormor Vicky - Whoa!!! See! THAT is what I'm worried about!!!! Some of the side effects I'm having - such as muscle cramps and twitching can be potentially serious! (it also doesn't help that a family friend passed away in January because his doctor didn't take him seriously when he came in with leg pain and then died of a blood clot less than two weeks later!!!!)
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
9mg Budesonide (one capsule 3 times per day for the next 6 weeks)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 3/27/2008 1:12 PM (GMT -7)   
Megera,
Here's one article I read. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1116580

PubMed has a lot of such articles and is a good place to look for info about the role patients are increasingly taking in their own care. My own opinion is that patients do need to advocate for themselves and take an active role in their healthcare, but once they find a good doctor, to also realize it is their responsibility to be a good patient for that doctor.

I am so sorry again that you're dealing with this, I know what it's like to live in the boonies and not have much of a "selection."

Post Edited By Moderator (CrohnieToo) : 3/27/2008 11:33:22 PM (GMT-6)


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 3/27/2008 7:33 PM (GMT -7)   
My daughter was forced into a situation where she had to participate in trial studies at a teaching hospital which was 10 1/2 hours away. It was her only option. They paid for her travel to and fro as well as hotel accomadations for myself and her (she was under 18 at the time). She was treated with the most thorough medical care and follow up I've ever seen. While you Dr. seems to still be in the dark ages and being that he may "seem" like a nice guy, he still is NOT listening to you now. How can it be that the two of you would ever come to terms with a course of treatment? It's my experience it's worth the trek for better quality health care. I can't imagine living in such a remote area as you do with this disease. Sixteen hours is forever should anything go seriously wrong. Please reconsider your options. I hate to see things get worse for you because of some Dr.'s misguided ego! While I do like Sarita's suggestions myself, I do believe this will only inflame the situation ergo futher cutting off your communication with this guy.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/27/2008 9:00 PM (GMT -7)   
Megera, here in Australia we have a big problem with isolation too, and some doctors are beginning to implement a system where remote patients can consult their city specialists by telematics.

Do you have a similar system there? If so you might like to explore it so you can build a long-term relationship with a city specialist instead of having to rely on the bogans flown in by your local health clinic.

I'm really sorry, Megera. It's such a problem, being in a remote area.

I.
Co-Moderator Crohn's Forum.


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/27/2008 9:09 PM (GMT -7)   
I'm sorry that your doctor is a dimwit. I understand the other posters' points about not wanting to "inflame" the situation, but I'm gonna have to disagree. My doctor tried to play "I'm the boss" with me, and I fought back...somewhat tactfully. After the first horrific appointment with the nitwit I was so furious that I researched everything on the internet, printed it out, and faxed it to his office, accompanied by a cover sheet containing the remainder of my unanswered questions. I believe my cover letter said something along the lines of

"In preparation for my follow-up appointment next week, I have researched my concerns as best that I can. It seems as though you are very strapped for time in the office, so I thought it might be helpful if you were able to review these documents prior to my appointment so that we may discuss my concerns in depth at that time. Thank you in advance for your time and attention to my well-being. I look forward to discussing these issues at my next appointment."

I never thought in a million years that it would work, but it did. He went from treating me like a whiney 2 year old, to treating me like a reasonably intelligent adult who is self-aware, and more than capable of making major heath care decisions when given the right information.

I don't know if it would help you to do the same... like the others said - it might make it worse... but I thought I'd chime in with my two cents from the dark side!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 3/27/2008 10:30 PM (GMT -7)   
broomhilda - There is absolutely no way, unless I pay $1000+ per trip or go to a different Territory (I probably wouldn't be able to see a doctor there anyway - I bet they fly specialists up in that city too!!). I appreciate your concern but there's really nothing I can do (the time off from work itself would be prohibitive). We do have medevacs though if things go terribly wrong and I need to be flown to the next largest centre (we have a very good hospital here with pretty much everything but advanced imaging machines). As it is, I'm being flown to two different cities for tests in the coming months. (Moving isn't an option either.)

ivy6 - We have something similar to telematics called telehealth. I've only used it for conferences and for our residents to have "visits" with their relatives in further isolated communities.
I'm hoping when I go down to one of the cities next month that I'll be put in touch with the other GI doctor there (there's actually 3 in that city).

patientspiders - Sounds like you did the best thing you could have done to make the doctor take you more seriously! And I thought I was doing good with going in with a list!

I got a copy of all my reports and biopsy results today and the doctor that I saw yesterday actually wrote a very good report. He even outlined why he switched my meds. I don't want to go through the hassle of having to get my reports every time just to know what the doctor is doing but it at least seemed like he had a reason for what his plans were. I'm going to try very hard when I talk to him next (which will most likely be on the phone when my blood test results come back) to convey how I'd like our patient/doctor relationship to go. Maybe he's not used to patients wanting to be a little bit more in control.

Now all I have to do is hope that my ESR level has dropped!!!!
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
9mg Budesonide (one capsule 3 times per day for the next 6 weeks)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/28/2008 9:35 AM (GMT -7)   
Hey Megera - sorry you are having problems. I am just curious, what do you do in such an isolated area? What is there for work and for your family? Are there regular schools? Anything to do for recreation? Sorry for my ignorance but I live 45 minutes from the city and I thought I was "out there." I go camping 3 hours North and see these houses and wonder... how do they make a living?
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!!!
 
 


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 3/28/2008 11:23 AM (GMT -7)   
FitzyK23 - I live in the largest town in the region I live in (far north of Canada). Because of our isolated nature, we actually have a lot of amenities towns of comparable size don't. We got a brand new hospital in 2004, a new rec centre (pool, gym, skating, curling rink) in 2005 or 2006, we have an elementary school, high school and even a college! The only things we're really lacking are fast food restaurants, a movie theatre and a shopping mall.

I work in a group home for mentally and physically disabled adults. Most of the people that live here have government jobs. There are tonnes of places to work (video store, library, post office, bar, hotels, grocery store, etc etc) :)
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
9mg Budesonide (one capsule 3 times per day for the next 6 weeks)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 3/28/2008 12:25 PM (GMT -7)   
Megera I am a behavior specialist I work with the same population only in day support in the DC area.
Sj

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 3/28/2008 4:39 PM (GMT -7)   
I had an equally bad experience a few years ago during my last big flare-up ( right after I re-joined HW). But my office visit with my GI was very positive. I ran into problems right after my last scope. The guy came on acting like I was to blame because he didn't get a good view, hadn't listened to a word I said in the office, & was cold & rude to my mother on the spot. I never went back, & I haven't paid the moron either. Wish I had the warning an ER doc gave me post facto. "The man starts out warm, then becomes an Icecube!"

Matthew

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 3/29/2008 11:05 AM (GMT -7)   
Megera,

That sounds like a very frustrating problem you have with that doctor. This disease has so many hidden symptoms that at first glance one would not believe related, but turn out to be so. If the doctor doesn't listen and is abrupt with you, it can cause things to slip under the radar. Those symptoms might be the beginning of something very serious. Some of the medicines we take can have very adverse side-effects, that often don't manifest in a traditional way. Your isolation and subsequent inability to obtain second opinions could be a real problem. Perhaps when you get those tests performed in Edmonton, an appointment could be set up to have a second opinion from a specialist there...just to reassure you that the treatment plan that this doctor has set up for you is on target.
Please keep us posted.
Good luck to you,

Bev (a fellow Canadian from Ontario)

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/30/2008 8:33 PM (GMT -7)   
Thanks for sharing! It sounds like a nice little place!
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!!!
 
 


Goldi76
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/31/2008 9:16 AM (GMT -7)   

I may have an explanation for the nausea.  When I was on the same dose as you for the Pentasa I began to think I had morning sickness the nausea was so bad, the smell of toast used to really push it over the edge. 

I saw my GP who said the nausea was probably a side effect from the Pentasa.  He told me, quite logically, that the only thing keeping stomach acid in your stomach is gravity.  So when you lie down and try to go to sleep the acid goes with gravity.  One of the jobs of the Pentasa is to produce more stomach acid so your food is broken down more throughly.

I now take Omprazole every evening before bed, it helps reduce stomach acid.  But the exact drug and dosage has reduced as I have reduced the Pentasa. 

Hope this helps, sorry I can't help with the snotty Dr.


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 3/31/2008 1:02 PM (GMT -7)   
bentwistle - I'm very much hoping I'll be seeing a GI doctor when I get to Edmonton. I'm also hoping to get in touch with one of the other GI doctors when I go for my SBFT in Yellowknife.

Goldi76 - Thanks for your comment! As annoying as these symptoms are, it's good to know that there are others going through the same thing. I would've thought it was morning sickness too if it had actually been a possibility (feeling so sick and gross doesn't really lend itself to romance...)

---------

Now that I've been off the pentasa for just less than a week my dizziness, nausea and night sweats have pretty much disappeared.
I don't know if the salofalk has made that much of a difference - my guts still feel pretty much the same (the pain and discomfort are liveable though). It was the weird side effects that were getting me down.
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
9mg Budesonide (one capsule 3 times per day for the next 6 weeks)

Discontinued meds:
Asacol 2.4g
Pentasa 4g

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