Seeking a second medical opinion (Sarita-read this if you can)

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gumby44
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   Posted 1/3/2008 8:19 PM (GMT -7)   
I've been very sick over the holidays, and my GI doc has been less than helpful. I called Univerisity of Michigan Hospital and the head of the dept. Dr. Zimmermann had a cancellation, and I will be seeing her on Tuesday. (faster than I can get in to see my own GI!) The U of M is about 4 hours away from where I live. I was wondering for those of you who have gotten second opinions, if you ever have the consulting doctor manage your care? Can you manage Crohn's long distance? I don't want to burn bridges with my current doc because I worry that I will need to have someone take care of me if I ever go into the ER at home and need someone to care for me. Since Sept when I was first diagnosed, I had three weeks of remission, and have been miserable the rest of the time. I'm hoping that I can get on a better combination of meds to get this under control.
Any advice on how to finesse this well with the docs would be appreciated. (Hey Sarita, if you are reading this, I'd love your perspective...thanks!)
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


stkitt
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   Posted 1/3/2008 8:26 PM (GMT -7)   

Hey there,

Hi this is Kitt.  Boy that is a tough one as both physicians are GI and therefore engaged in the same medical speciality.  If you were going from PCP to speciality then your PCP will usually accept the recommendations of the specialty physician.  When you seek a second opinion it is touchy to bring that opinion back to your current GI doc. Unless the opinions match, this is a tough one.

I too will be interested to see how others respond. I wish you the best and keep posting.

Kitt


 
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Sarita
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   Posted 1/3/2008 10:52 PM (GMT -7)   
Gumby,
No doctor should ever feel rebuffed just because you want a second opinion. The "good" doctors, in my opinion, are the ones who welcome their patients getting a second opinion. If I were you, I would call your current doctor ASAP (before your U of M appointment) and leave a message saying, "I just wanted to let Dr. So-and-So know that I've had the opportunity to have a consultation at a major academic medical center. I'd like to continue seeing Dr. So-and-So on a regular basis but was interested in a more collaborative approach to my care. I'd be happy to send the reports from U of M to Dr. So-and-So if he would like." Or something like that. That way you are keeping the bridges un-burned. What do you think of that?

I remember telling my GI in Alaska that I wanted a second opinion at Mayo, and he was all for it. He was just as interested as I was in finding out if they had any better ideas! That ratcheted him up a notch in my book.
Co-moderator - IBS Forum


Zanne
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Date Joined Apr 2005
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   Posted 1/4/2008 3:53 AM (GMT -7)   
I struggled with this for several years. I'll give you my experience and you can take it for what its worth.

My PCP is also a GI. I started seeing him as a specialist when I was diagnosed and evenually switched to him as my primary doctor. Over the years, his practice has become more focused on primary routine care and he no longer does GI. He still maintains his specialty, but he doesn't do any procedures or keep as up to date on the meds and advances as I would like. Several years ago, he started farming me out to another GI for all procedures. I was never really happy with this new GI, it was his way or not at all, and GOD forbid you ask a question. And I was not happy that my PCP was not doing GI anymore. Over the course of the years, I have proven to be a difficult case and have seen the head of GI at a major hospital in Boston (45 minutes from home) on a consultation basis, maybe once every 3 or 4 years. He semi-retired and I started seeing his replacement.

So long story short, after a very difficult year of multiple hospital admissions, both locally and in Boston, I have a team of doctors who are happy to work together. I did switch local GI's to one that had been recommended to me by the old head of GI before he semi-retired. He and the Doctor in Boston worked together and know each other well, so they have no issues working together to make sure that I get the care that is right for me. And once I finally got a new GI that I was really happy with, I no longer cared that my PCP had basically abandoned my GI care.

So the upshot is, that doctors who are worth your time shouldn't have any issue with you having a second opinion. In fact they should welcome it. Why can't you have a team of doctors? Local doctors who oversee your basic care and urgent needs, and then go the 4 hours when needed for consultation. Be that once every few months, once a year or every few years, based on how you are doing.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Illini
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Date Joined Dec 2007
Total Posts : 298
   Posted 1/4/2008 9:26 AM (GMT -7)   
I'm in a somewhat different position since, as a student, my primary care is at the university's health center. At first when I was having problems they managed it there, and sent me to the ER twice. The second time I was at the hospital inpatient they assigned me to a GI doc who outright said, "I can't help you, but I'm happy to get you a referral in Chicago."
 
My mom works in hospital in Miami, and was asking around regarding hepatologists. The name of one world-class doc came up, but he was way too busy, so he gave her names and phone numbers of docs in my area. One was for a local doctor who was a personal friend. Turns out he was retired... and the number given was his home phone number! But he gave us the name of yet another doctor in our town so I saw him for a consultation, he worked me in to his schedule and gave his opinion.
 
The original GI doc got me an appointment very quickly with the head of U Chicago's hepatology department, who also said "I don't know what's wrong with you" and ultimately I got a phone call from his nurse a month or so later saying he had "nothing to add" to the local GI doc's opinion. I wasn't impressed. So... I hope your experience is better, but don't go into it thinking that seeing a top-notch doc will be the answer. I think the most important thing is finding a doctor that is genuinely interested in your case. From what I have been told recently, the hard part of Crohn's is getting the diagnosis, and after that, pretty much an GI doc can manage the treatment. If you feel your local GI doc does not help you enough, maybe when you see this doctor at U of M, ask her if she can recommend anyone in your town, or if she knows someone who can.
 
At this point I have gone back to the local GI I had a consultation with, he did my colonoscopy, diagnosed me, and it seems like I will continue with him since he is also interested in hepatology. I plan to call back the doc at chicago and give them a second chance (recent CT scan picked up possible new liver issues) and also see if they can get me an appointment with an IBD specialist there for another consultation on how to go about treatment.

chroniemomx2
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Date Joined Apr 2005
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   Posted 1/4/2008 10:31 AM (GMT -7)   
I have been to U of M as a second opinion/consult. I couldn't get in to Zimmerman as quickly as I could Aldrich, so I went with Aldrich....although my first choice was Zimmerman. I was happy with them. She agreed with the treatment my local gi was doing, so I just go back every now and then. My local gi was totally fine with it, as should be an dr. who is confident and knows what they are doing. They shouldn't be intimidated by you getting a second opinion. I actually just took my daughter down there to see a peds gi (because we don't have one locally), and I coulnd't have been happier with the way the apt. went. Please let me know how you like Zimmerman.

gumby44
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Date Joined Nov 2007
Total Posts : 4095
   Posted 1/4/2008 6:28 PM (GMT -7)   
You folks are the greatest! Sarita, I pretty much used your approach with my GI's receptionist and she was very nice and said that many patients seek second opinions, and that my doc sends people for consultation when he is out of ideas for treatment. The only problem is that I feel very sick right now, and I keep praying I can last until Tuesday. My local GI left me a message yesterday to get stool cultures...I'm having loose stools and lots of pain about 15 times a day. When I went to the GI office to pick up my records, I asked for the stool culture kit and was told that the doc said that he cancelled the stool tests. He said that if I was going to U of M, then "let them decide what they want to do." He won't call me back and speak directly to me, but I have a feeling he's not happy with me. I may need to find another local GI when I get home. I just hope the pain doesn't get too bad and I can stay out of my local ER and make it to Ann Arbor!
My 18 year old son is a freshman at U of Mich, so I will get the added bonus of seeing him too:) Thanks for the support. I couldn't cope with all this without you!!!!!!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


Sarita
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Date Joined Mar 2005
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   Posted 1/4/2008 6:47 PM (GMT -7)   
Oh Gumby! I'm sorry to hear you're feeling so ick! I bet your doctor was just trying to save you time, energy, and money by letting the stool collecting go by the wayside...so don't worry about that. And he's still your doctor right now so if you need to, you should be able to call his office for help. I hope this weekend goes okay and you make it until Tuesday. Do you have anything for the pain?
Co-moderator - IBS Forum


gumby44
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Date Joined Nov 2007
Total Posts : 4095
   Posted 1/4/2008 6:53 PM (GMT -7)   
My doc gave me Vicodin awhile back, but I hate it because it upsets my stomach and makes me feel worse! I do have some Xanax left over from a hospitalization in 2006. If I take a 1/2 pill (.25 mg) it helps me at least drift off to sleep in between waking up with bouts of D all night long.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 1/4/2008 7:44 PM (GMT -7)   
Are you on prednisone at the moment? It sounds like you could use a booster dose to get you through until Tuesday.
Belleenstein:

30+ years living with Crohn's.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 1/5/2008 12:18 AM (GMT -7)   
HI Belleenstein,,
Yes, I'm on 30mg of Prednisone,but it doesn't seem to be helping. It's 2:15 Am here, and the D has stopped but I have terrible crampy pain. I'm fussing around in my head with whether or not I need to go to the ER. I hate all the worrying about what to do!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 1/5/2008 1:16 AM (GMT -7)   
Hey Gumbo, I hear ya...I was there two weeks ago. Determining whether to go (and hence wait for a while, tell a bunch of cheery-appearing nurses that you fill like melting into their floor and what a biohazard that would be, then shivering away on a cot with a blanket in an overly-air-conditioned dungeon while a nurse gouges out your veins looking for "the right one" with a 12-gauge to prep you for IV fluids, while waiting to be seen by a resident who's probably been awake for >24 hours, who may or may not give you anything for your pain, depending on their mood, then that obligatory co-pay, then freezing some more, and maybe throw in a febrile baby in the next room and you've got yourself a winner ER visit...) is such a drag. If you are having 7-10 pain and you're suffering, you could place your bets that someone could help you resolve that. The diarrhea, at least, has slowed...that's a good sign. But sometimes even that victory seems short-lived in the middle of a crisis.

It's your call, my friend. Do whatever feels right because heaven knows we want you to feel right. We've all been there. Hang in there and, as always, keep us posted.
Co-moderator - IBS Forum


gumby44
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Date Joined Nov 2007
Total Posts : 4095
   Posted 1/6/2008 2:12 PM (GMT -7)   
Hey Sarita,
You are such an understanding supportive person. I can't imagine how I would cope without this healing well community! I feel like my GI doc has abandoned me, and I'm just trying to hold out until Tuesday when I go to University of Michigan. It is posssible that my GI and I are having a communication difficulty that can be resolved, but I'm honestly way too sick to have the energy to take it on. My brother is an ER doc in Chicago. He convinced me to go up to 40 mg of Prednisone, which seems to be helping a little. He is also calling in for me to get some basic labs at my hospital to make sure I'm not dehydrated or in real trouble, and I will take it with to Ann Arbor. I hate to bug my big brother, because I know it puts him in a funny position, but I guess I'm desparate. He agrees with me to stay out of the ER. I don't feel I need pain meds, I don't have a total blockage, and I don't believe that I'm dehydrated. I need a Crohn's specialist to get me out of the flare, and I don't think the ER can help there. Thanks for all your love....I'll keep you posted.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares

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