Cancelled Appointment...ARRGH!!!

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Alibee
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Date Joined Oct 2010
Total Posts : 286
   Posted 8/2/2011 5:48 PM (GMT -6)   
I have been waiting for months for an appointment with another surgeon for a second opinion regarding surgery...about a month ago they finally called me and scheduled me an appointment for August 5th. Today I got a voicemail saying that they had an emergency and rescheduled my appointment for SEPTEMBER 2nd! That is so far away, I barely thought I'd make it to the 5th!

Has anyone else had this happen, and did you have any luck rescheduling for an earlier date?? I am hoping if I call tomorrow and say that no, I can't wait until the 2nd, maybe they can fit me in earlier....but I have no idea. This sucks so bad.

TickledPinkTwice
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Date Joined Mar 2011
Total Posts : 242
   Posted 8/2/2011 7:11 PM (GMT -6)   
I am so sorry!:( Maybe ask if they have a cancellation list?
Mary 26,Chronic Constipation/Hypothyroidism
Colonoscopy: Polyps,Melanosis and long redundant colon, Sitz Marker: Colonic Inertia. Defecography:Rectocele and Enterocele, Anorectal Manometry:Normal, Pudendal Nerve Study:Normal, Gastric Emptying-20% at 4 hours, Small Bowel Followthrough:Normal
COLECTOMY 6/29 AT 1P.M.-Removing all of the Colon except rectum and 1 inch of Sigmoid Colo

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/2/2011 7:11 PM (GMT -6)   
You should definitely call...since this was THEIR reschedule, you need to explain your situation.

One time I had scheduled a SURGERY for a certain day, took off work, found someone to drive me, they took off work, etc., and two days before they called and said they needed to reschedule. I was like, I CANNOT DO THAT. This is too short of notice, etc, and they ended up keeping my surgery the same. I think if you put up a fight they will try to accomodate you. Even if they can't get you in for the 5th still, I bet they'll do like a double appt or something to squeeze you in some day soon. Sometimes they've even said to me, "We're going to try to squeeze you in so you may have to sit in the waiting room for a while but we will get you in." I"m sure you're willing to sit there for an hour or two if it means being seen at this point!

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 8/2/2011 11:42 PM (GMT -6)   
yes, call them! don't stay silent about it, express your objection! sometimes you have to fight to get what you need. i'm so sorry. i sure know what it's like and i had too many cancellations than i can count :( when you're in such a bad shape, rescheduling you to 1-2 mons later can be devestating. call them!! let us know what's going on.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 8/3/2011 11:29 AM (GMT -6)   
totally agree with all comments above... this sucks!! they can find for a 20 minute appointment surely??? put up a fight even turn up at the surgeon's office and refuse to leave unless you're seen! my experience with doctors and surgeons is you have to keep hassling, chasing and pushing. Good luck and let us know how you get on x
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 8/3/2011 11:42 AM (GMT -6)   
Hi everyone, thank you for your advice. You're all so right, you definitely do have to keep on top of doctors offices if you want them to do anything for you.

My mom called me this morning to tell me that SHE actually wanted to call them for me. I was A-OK with this because she works in healthcare, managing lots of doctors offices and hospitals and so she is very well-versed in how to talk to people working in doctors offices, she knows all their excuses and how they operate etc.

They did have a cancellation, not a lot earlier - but still earlier than September. They can get me in about two weeks from now, on Thursday August 18th, at 9am. There are a couple of cons to this though, first - I have to do 2 enemas before the appointment because they are doing a rectal exam. This means I have to wake up at like 4am to do them, and then get in the car for a 3 hour ride because we live out of town and still have to drive up to Duke to get there by 9am.

Second...August 18th is MY BIRTHDAY! Now, I have been telling myself in my head for quite some time that the best present I could get is to have my belly fixed, but I didn't exactly mean it literally. And I'm worried, if I got bad news, like she said she wouldn't do the surgery, or wanted MORE tests first...well that would be another awful birthday down the drain. I just have to hope that fate wouldn't be that cruel to me, and I am praying I get some good news on my birthday.

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/3/2011 12:11 PM (GMT -6)   
That is better than a month, I suppose. I was going to suggest calling every single day to see if they had a last minute cancellation, but if it's 3 hours away then I guess that's not an option.

As for it being your birthday, it sucks, but this is really a bigger deal. You're not a kid...as you get older, your birthday just tends to have to take a backseat to life, I find, and you said it: this is the best birthday present you could ask for. If you haven't seen anyone before about this problem, chances are they will need to do some tests. They don't do a big surgery like this without at least some sort of diagnostic test. So my guess is, they will not schedule surgery right away, but they will also not say "no." and just for the record, if they do say no, you can either see someone else or talk to them and explain how much you want this. This is YOUR body, you need to explain how miserable you are and fight for yourself! But honestly, if you're that miserable it will most likely show on the tests and then they'll have to say yes.

You're dealing with constipation, right? If so, I think the tests for that are not too bad. I have had the opposite problem so I will let others on the board talk about that. But either way, it's a small sacrifice to make for the rest of your life. You can celebrate your birthday anytime!!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 8/3/2011 12:42 PM (GMT -6)   
Hi 80's Chick - thanks for the post. My birthday will definitely take a back seat to all of this right now. I am still going to call here and there to see if they have had any cancellations.

As for tests, this appointment is for a second opinion - so I've already been through a ton of testing at a teaching hospital (UNC) and met with a surgeon there who said he would do the surgery...but my family wants me to get a second opinion for their peace of mind. I am hoping they will just be able to go by all of those tests because they were all within this year.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/3/2011 12:48 PM (GMT -6)   
great, this is def much better than Sep 2nd. sort of. sounds like your mom is a great advocate for you. i'm glad she's helping you out with this. but even if you didn't have her help, as Sarah and Stephanie said, the best way is to call EVERY day or even show up at the surgeon's office. that would have shown them how desperate you are! 
 
you've already had ALL the tests possible and they are all recent. true, there are places like cleveland clinic where even if you had a defecography, for example, 2 mons prior to seeing them, they don't care, they like to do their own tests. but it doesn't necessarily mean that dukes opporate the same way. at least i hope they don't. personally, i don't see any point in repeating all your tests, esp since they are all so recent and i hope they don't feel the need either. 
 
i know what you mean about getting up at 4 or even 3 am to make it on time early in the morning for tests and consultations sad   i had so many mornings like that. but i was happy to do it, cuz after years of being ignored by drs, i was so happy and appreciative of the fact they are actually and finally looking into my case, and it was just a well worth sacrifice i had to make on my way of getting well and getting my life back. you'll make it too :-)
 
now i can't wait for your birthday to come already :-) hoping this is the happiest birthday with good news for you! waiting anxiously for your update!

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/3/2011 12:48 PM (GMT -6)   
Oh! Then most likely they will use them. Did you check to make sure the new dr has the records from your first dr? I've definitely been through hell multiple times trying to get records sent over. If your first dr said he'd do the surgery, I'll bet you've got a good birthday coming :) Keep us posted!!!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 8/5/2011 12:30 PM (GMT -6)   
80sChick - I was pretty sure they had everything, because when I first asked my other doctor at UNC to make the referral to Duke for me, I was told Duke had asked for all of my records to review to determine if they could assist me, and that after reviewing them they would contact me to proceed with scheduling the appointment.
They scheduled an appointment for me, but just this week my mom spoke to the surgeon's PA who wanted to know if I had any images on disc or something like that (I only have the sitzmark xrays on disc, the rest of the records I have are on paper), and she was also asking questions like, has she seen other doctors about this? My mom couldn't remember exactly what they were asking but they seemed like questions that they should already know the answers to...obviously if I had all of these tests done at UNC, then this isn't my first GI appointment. I returned the call but I am still waiting to hear back.

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 8/16/2011 9:30 PM (GMT -6)   
I am so mad...My mom just checked our answering machine before going to bed because there was a new message from today. The surgeon's nurse called to say they would have to cancel my appointment on Thursday and reschedule for "late September"...and if I could please call them back to let them know I got the message, because they want to make sure I don't show up on the 18th because they won't be able to see me.

My parents both took Thursday off work, and I booked a hotel room for tomorrow night because I had to drive out of town, so now I have to cancel that as well.

They also said in the message that if I didn't want to wait, they could see if they could get me in with another of their surgeons for a consultation at an earlier date. I don't even know what to do...at this point I don't even want to see this surgeon anymore so I am tempted to see someone else.

There are two other surgeons on their website: Dr. John Migaly, and Dr. Christopher Mantyh...so maybe I will look into seeing one of them.

My Mom is very angry and said she is calling tomorrow and speaking to whoever she needs to speak to in order to find out what the deal is.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/16/2011 9:50 PM (GMT -6)   
You or your mom or SOMEONE NEEDS TO CALL AND COMPLAIN. You need to explain the situation. This is completely unacceptable. I am so sorry to hear this. Put your foot down and demand better treatment. This may be a good hint about the type of care you can expect from this dr....just something to think about.  They need to know what you're going through, because this is seriously inexcusable.

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 8/16/2011 10:54 PM (GMT -6)   
I would go with Mantyh if you go with someone else... sorry that happened to you! My appt is still the 18th(I hope) so I don't know why they cancelled you?? I have a hotel booked for tomorrow...
DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/16/2011 11:48 PM (GMT -6)   
You need to get someone else, that is uncalled for!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/17/2011 3:54 AM (GMT -6)   
i agree with summer and 80'schick. this gives the impression this dr is not the dr you want to take care of you. find a better dr asap!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 8/17/2011 10:56 AM (GMT -6)   
Thanks guys - I'm unsure why they had to move my appointment, but I am assuming it is partly since I am a new patient and I think those who are already surgical patients take precedence over new people. My mom called this morning and spoke to the PA, who said Dr. Thacker had to be in the OR during that time and it was unavoidable. My mom said she was very apologetic and knows I have been waiting a long time, and spent 20 minutes going through her schedule to find another date that was not "late september", and they scheduled me for Friday September 9th. She said she was marking the appointment as "DO NOT CANCEL" and she noted that I had already been canceled on twice. If they even TRY to move this appointment that is IT and I would absolutely see someone else.

As much as I do not want to wait, we have heard only good things about this surgeon's skills (maybe not her communication skills) and she is supposed to be clinically excellent. My mom wants to give it one more shot before we go through the process of getting my records transferred again and seeing a different person.

The only thing that worries me about waiting so long is, this is for a second opinion. I don't know how it all works, but if another surgeon has already offered to do the surgery if I decided that is what I wanted...is there a certain amount of time that a surgeon's offer remains on the table? If he gave me his card and told me he would do the surgery - can I wait 3-4 or even 5 months to decide? Or would I have to start all over at square one. I know this doesn't make a lot of sense but basically I feel worried that if I wait too long he will "forget" that he said he'd do the surgery! Though, it is noted in my records that I met with him and he said he would do it should I choose to.

On the bright side, at least now I don't have to have a rectal exam on my birthday...

Post Edited (Alibee) : 8/17/2011 10:04:35 AM (GMT-6)


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/17/2011 1:53 PM (GMT -6)   
i hope Sep 9 will be as scheduled. i don't think the other surgeon will forget he recommended surgery. and even if there's need to refresh his memory, your records will do the job i'm sure. no need to worry about that. well, i know the waiting is the worst.. esp when you get rescheduled all the time, that intensifies the frunstration. ((hugs))we're waiting here with you. hang in there.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 8/17/2011 2:34 PM (GMT -6)   
Alibee - I feel I should warn you. Because Dr. T is so popular, it may be a few months before you could schedule surgery. I'm not sure you want to wait that long? I went to my post op 3 weeks after surgery and scheduled step 2 and the first appt available was 3 months from my first surgery and nothing sooner! Just thought you should know!
DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 8/17/2011 2:42 PM (GMT -6)   
Hey Alibee, happy birthday! Enjoy your rectal exam free day tomorrow.

It is such a mixed bag having a popular dr.... yesterday I had to wait almost 2 hrs to see my gi doc.... I don't get upset, because sometimes I've been the cause of others having to wait ...

But I think you're doing the right thing, as the jpouch is such a complex surgery which depends on the skill of the practitioner.....and you also want to make sure you're a good candidate.

The other surgeon is not going to rescind his offer, it's not like asking someone to a movie or something.... but he might need to examine you again beforehand etc (and hopefully he won't leave town or anything).

I didn't get a second opinion for surgery.... I was just so sick and wanted it to happen right away. My gi doc recommended someone, and I liked her a lot, so I just went w/it.... but a permanent ileo is an easier surgery (although mine was lapro, so that's harder).
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 9/8/2011 1:37 PM (GMT -6)   
Well my appointment is tomorrow...I got a call from the surgeon's PA yesterday to confirm it, and she asked if I would be willing to come in a little early so they can look at the DVD I got from UNC with all of the images from my tests on it. I am their last appointment of the day. My parents both have the day off work and will be coming with me. I am supposed to do 2 Fleet enemas in the morning, so tonight I am taking my dulcolax and miralax again to hopefully make the enemas work a little better. Then in the morning we have a 3 hour drive to Duke. I think I am going to go in alone first, for the first part of the appointment, and because they said they will be doing a "full rectal exam"...whatever that is. Then when she gets around to giving her opinion I'll have my parents come in. I am praying to have some good news tomorrow. Ideally I hope to be able to get another OK for surgery tomorrow, and possibly even schedule it.

I have been waiting for this appointment for a LONG time, and I am ready to get it over with because truthfully, I am very nervous. I feel like all of the things I was going to say to the surgeon have completely left my mind and now I don't know what to say! If she asks me why I am there tomorrow I am afraid I'll be sitting there like, "uhhhh....." It is always hard to start over at square one and explain your whole history to a doctor, but hopefully with all of my records and tests she won't have to ask me why I am there...

I have felt worse than ever lately and I just need something done, please pray/cross your fingers/send good thoughts - anything for me tomorrow, I will be shaking in my boots. I'll update here as soon as I get home tomorrow.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 9/8/2011 5:16 PM (GMT -6)   
I will send good thoughts tomorrow! Glad you're finally having the appt. Having your parents come in at the end makes sense.

I'd also recommend writing down a list of questions you have and going over it w/your parents during that 3 hour drive, so they can ask some of them if you get too flustered.

It's really, really normal to be nervous. This is a big deal.

I started crying when I first saw the "Dept of Colorectal Surgery" sign at my first appt w/a surgeon....

Hope you start feeling much, much better soon. You're taking the right steps to make that happen.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 9/8/2011 6:39 PM (GMT -6)   
Hi and thanks for the update!

I'm so glad you're getting in tomorrow. In my experience you get asked your medical history at any dr appt by 900 people. The nurse, the physician's assistant, the dr himself, and all of those people have your records right there. It's really annoying.

I'd write down a list of things to say now, because who cares if you look foolish? In my opinion you'll look prepared.

Good luck and let us know how it goes!!!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)
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