How do you find a doctor who listens to you

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Ne Ne
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Date Joined Apr 2008
Total Posts : 243
   Posted 5/1/2008 7:23 PM (GMT -7)   
confused I have a so, so GI doctor but he's 4hours away from where I live. My Internal Med doctor don't really listen to me I've been in so much pain a he seems to blow me off. I got a hold of my medical records and he had put in them I needed to see a therapist. He one out, because I'm going on the 6th. But I called today to get information about a CT scan I had that was all, and I ended up in a fight with his nurse. To go back I have had a pain on my right side around my liver that goes to my back, I've asked him over and over what it could be???? He has ran some tests but he thinks its in my head. My adrenal gland is messed up he said it was the drugs and he wouldn't do anything about it. My GI said its not the meds, so who do I believe???? I'm so worried about this pain for almost a week I've been hurting so bad all I do is cry.I cussed out the nurse because she told me I needed to be seen..... I went in last Sat, the doctor I seen looked at my records, and gave me mussel relaxer & pain killer ... Told me to take the pain killer first, then if that don't work try the mussel relaxer, and if that don't work take them together and then I wouldn't care about anything..... confused .....So I figure unless I'm dieing I really don't need to see my IM doctor....This evening his nurse called me back and said the doctor would send me to a pain specialist .......I WANT TO KNOW WHAT THE PAIN IS FROM.......NOT HOW TO DEAL WITH THE PAIN........ My Mom died from cirrhosis of the liver,and it was from medication......So I'm a little worried when this pain won't leave...... sad I'm looking for another doctor but I live in South Dakota and here there is not a lo to chose from ...... I keep getting told I have the best doctor in town.......But I don't trust him anymore... nono



Ne Ne

Mark Mac
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Date Joined Mar 2008
Total Posts : 41
   Posted 5/1/2008 7:41 PM (GMT -7)   
That's a tough one Ne Ne. I have had a tough time with finding good doctors as well. My current GI doesn't seem to have time for me and yet feels that he knows best how to treat me. I disagree. He, like all specialists, have a wealth of information to offer us, but they often lack the time or inclination to really listen and address problems that are outside of their scope of knowledge. This is when it becomes "in your head" to the doctor.

While I would not discount the potential benefit you might gain by going to see a therapist, depression does not usually manifest itself in localized pain, and I think that your GI just doesn't know what to do about things that aren't directly related to the digestive system.

I have a great primary care physician who takes the time to listen, and is more effective about communicating my needs to my GI than I am sometimes. He and his staff are very supportive, and I feel lucky to have them every time I'm on hold for 15 minutes with my GI's office.

My advice to you is to find a good general care physician. If you have an advocate who really cares about their patients, they can be a great resource to work with those docs with less than stellar bed-side manner. In the event that the IM doc doesn't have a clue, a good doctor knows when to find a specialist in the area you need. Good luck with everything; keep us posted.

Mark
28, male, diagnosed CD in 93'. Currently taking Humira, and darvoset for pain. Also getting acupuncture and chinese herbs as well as a massage when I can afford it. 107 lb

"I'm not a doctor, but I play one on TV"


Redjeep
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Date Joined Nov 2005
Total Posts : 1024
   Posted 5/1/2008 8:28 PM (GMT -7)   
well said Mark.

rj

CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 5/2/2008 4:18 AM (GMT -7)   
And I strongly concur as well!!! We NEED one doctor who will listen to us, who will see us as an entire human being, not just a GI tract or a uterus or a bladder or ... whatever. We need a doctor to coordinate our total health care. I INSIST that the results of EVERY test, procedure, blood draw, whatever, be sent to my family doctor, NOT just to the ordering physician. Even my optholmologist must send my family doctor a letter once a year regarding my eye exams (I have glaucoma in one eye). We need a doctor who BELIEVES us.

As a for instance: minor Crohn's symptoms when I was considered to be "in remission" by my gastro. She's not a particular believer in the CRP and sed rate and seldom orders them. My Mayo Clinic gastro on the other hand always orders a CRP "and" sed rate w/every regular blood draw for the Imuran. My family doctor will order a CRP and sed rate whenever I indicate something is going on that might be Crohn's related and "we've" usually been right! Now, the CRP and/or sed rate might be only slightly elevated but it usually told him when I was getting sloppy about taking my Pentasa (I've always been faithful w/my Imuran).

I've read of those fortunate to have such a wonderful gastro that their gastro is their primary care physician. The "specialty" doesn't matter, its the doctor. Does he/she see you as an entire human body and respect your questions and or opinions?
 
As for your pain: how aggressively and conscientiously are you treating your disease? I can't advise you on pain relief as if Tylenol doesn't work for me I'm in a world of hurt. No oral pain medication has ever worked as well as Tylenol w/o making me sicker than I was w/o it. (I have a VERY low tolerance for nausea). But I would be looking to treat my disease more effectively to reduce the cause of the pain. It might ease your mind if you got a copy of EVERY test and precedure result yourself, including blood draws. You can quickly learn to question any abnormal results and what they might indicate and then push your doctor in that direction.
 
Good luck and God bless!


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 5/2/2008 5:24:12 AM (GMT-6)


Redjeep
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Date Joined Nov 2005
Total Posts : 1024
   Posted 5/2/2008 7:20 AM (GMT -7)   
You do need one main doc. Keep looking till you find one. My search exhausted me. I finally walked in and stated my postion clearly. Worked. Been with him now for over a year.

If they don't get to know you it's very hard to doctor someone. How do they know what you'r saying is what you'r saying. And there is a lot of guess work with crohn's patience. My doc knows now when I am serious. I have no problem calmly giving someone a needed verbal spanking.

It's also you'r dollar bill. I refuse to pay for someone to treat me badly!! The second a doctor begins to give you the feeling that he's bored. Get his attention. Tell him to walk back out the door, reevluate[sp] his need for you'r dolar bill, then he can come back in. Worked everytime for me.

rj

CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 5/2/2008 9:01 AM (GMT -7)   
Right on, RedJeep. Only a little more diplomacy in the manner in which you say it does help. But I totally agree about being right up front w/your doctor if you feel he/she isn't listening, paying attention, etc.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Celey
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Date Joined May 2007
Total Posts : 1284
   Posted 5/2/2008 9:20 AM (GMT -7)   
I'm sorry to hear you're having so much trouble! *Hugs* I understand where you're coming from...

In fact... first thing I thought when I entered this thread was, "A doctor that listens? Hold on. Let me get a net. I think I'll have an easier time finding a magical fairy than one of those."

Somethin' along those lines, anyway...


:(... At least be glad they're giving you something for pain... You definitely need to be sure to get checked out thoroughly. Your concerns are valid... The doctor isn't the one suffering, you are... and they need to find out what the problem is.


(I think my doctor has been in a good mood lately... or maybe he understands now that when I say I'm in pain, I really am in pain... I got a new pain medicine prescribed to me yesterday because I was having a lot of pain... I'm going to get a colonoscopy done soon... hopefully, it'll show what's causing me such problems...)

CT scans are usually pretty accurate, but I'm sure they miss things, sometimes... (I feel certain the one I had must have missed something because I don't understand how I could be in so much pain... and have some symptoms that I've never had with a flare-up before...)
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Redjeep
Veteran Member


Date Joined Nov 2005
Total Posts : 1024
   Posted 5/2/2008 9:40 AM (GMT -7)   
Crohnietoo you've got it. I can't remember who to give credit for what I'm about to say.[it's been awhile since I've been here]

It's about the level of smooth. You can learn to do this kind of thing without being offending or nasty. Takes time to learn. I used to have panic attacks about meeting new doctors.

rj

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 5/2/2008 9:43 AM (GMT -7)   
Thanks for your comments and I know I should watch what I say but,I get so tiered of always going over ,and over everything, For example: I went to my regular doctor about my adrenal gland and he said he would do nothing about it...because it was due to drugs.....I went to my GI doctor he said no it wasn't the drugs....So I don't know who to believe..... My GI doctor told me I need to get another doctor...... I've known my regular doctor for around 16 years, He was and is my husband's doctor to, I tend to question him to much or something, because he put in my records I needed to see a therapist.....because I had side effects from a drug..... His nurse told me I would have to live with side effects.... So I let them have it........I went to my family practice doctor to see if he would take me back he said with what I have he couldn't..... But he also said that my doctor has a BIG EGO and I stepped on it .....He said I should be the big person and appalagise, I feel he's my doctor I shouldn't have to worry about his feelings....even my husband sees the different way he treats me to him....He don't listen to me anymore and he's not sending my GI reports from test or anything....so I'm tiered of being nice I just told his nurse how I really felt right or wrong.....I don't think he will listen anyway....



Ne Ne

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/2/2008 12:36 PM (GMT -7)   
I know this is my problem rather than everyone elses but I have a problem finding a Primary care doctor worth talking too. Mine listens but doesn't usually know what to do with the information and asks me what treatment I need. If I knew that I would have gone to the minute clinic at CVS rather than waste a work day in the doctors office. (My specialists are the best its only my PM that doesn't get it).
Sj

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 5/2/2008 12:56 PM (GMT -7)   
sjkly, I'm right with you but thanks for the words



Ne Ne

Redjeep
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Date Joined Nov 2005
Total Posts : 1024
   Posted 5/2/2008 4:03 PM (GMT -7)   
Guys it's a tough thing. I have found when I take the crohn's factor out I get better results. When a doc asks me now what I think I need I usually know.
You can't banter back and forth. The he said she said thing can really mess you up. Becoming a problem patient is my biggest fear. I don't discuss my crohn's with my primary at all. I let him bring it up. And when he thinks somethings related he put two and two together.
He told me on our first meeting to let the GI deal with the crohn's and let him deal with all the other stuff that could kill me.

Simplify-
don't make it so complicated.

rj

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/2/2008 4:14 PM (GMT -7)   
It's hard to remember sometimes... that doctors are people, too... Some of them can be real jerks (and just like with any jerk, you shouldn't allow yourself to be pushed around or intimidated by them) but again... They are real people with real lives... and families, too, probably... If you did say something very hurtful, it would probably be a nice gesture to apologize...


Plus, positive responses by the doctor are more likely to result when you yourself are positive... It's very difficult, I know... Especially with as much pain as you are in...


Have you asked your doctor why he wants you to see a therapist? (Is it like a counseling therapist? Perhaps it's some kind of pain therapist) Think you said something about side effects because of your medicine... but... well...


A therapist might be a good idea, anyway... With this disease, it's very easy to become depressed and feel hopeless... and having a therapist to talk to can be a relief... A lot of people stigmatize getting therapy because it makes them feel like people who go to a therapist are crazy or people will think they are crazy... but that's not true.


Sometimes, therapy is needed...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Redjeep
Veteran Member


Date Joined Nov 2005
Total Posts : 1024
   Posted 5/2/2008 4:33 PM (GMT -7)   
I see a therapist. Wouldn't trade her for the world. We work on anxiety issues. Very helpful. This way I can talk about my crohn's issues without always having to bother family and friends. She will also help me talk to the doc.s too. She's my best doc.

rj

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 5/3/2008 6:14 AM (GMT -7)   
I get what you are saying and I start with a therapist on the 6 of this month. It was when he put it in my suggested to me I should go...I started going to him because after they removed my gallbladder and it did nothing for the D (going 15-20 times a day)I need someone to figure something out...He sent me to my GI doctor, But the GI doctor would not say it was crohn's until he did his own colonosopy and I wasn't ready for number 3 in less than two years.... They both reg doctor put me on asacol and the GI put me on entocort, that was after I spent 6 days in the hospital with 13 IV's because I was so dehydrated I lost 20 lbs in a week,but they did not dx the crohn's ,so I asked my reg doctor what he thought...and he said all I had was IBS and I had to learn to live with it.... So I questioned if I should keep taking the drugs????He said yes because I'd just start with the D again......and I needed to see a therapist......Thats when I got mad at him, so I went to my GI doctor, went through another colonosopy and he found the crohn's, that was June 07...... I started with all of this March 06.....After I was DX with crohn's my husband went to see him and told him I have crohn's ,his only comment was really.....So now that he was wrong its my fault......I still like him as a person but I feel he has done me wrong......




Ne Ne

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/3/2008 7:25 AM (GMT -7)   
I really feel for you Ne Ne. I've had the run around from doctors since I was 15, 7 years ago. My biggest pet peeve is when you tell them that a drug is not working after 5 years and they won't research something new for you because its to much of a hassle for them.
Doctors are only human to so im not afraid to get a second, third, and fourth opinion. Many of my problems are caused by docs not looking into to my pleas of pain. I had told my doc for 2 yrs that I had pain in all of my bones, but he wouldn't listen, so i found a new doc who ordered a bone scan, which diagnosed me with Osteopenia, due to the lengthy use of prednisone(2 yrs) which the doctor never paid attention to. Anything over 6 weeks is to much. And yet again I'm on prednisone and now that I'm weaning off it I i'm getting tremendously sick again.
I'm just in search of a new G.I. becasue there isn't one near where I live. The closest doc is an hour away and he's just an internist doctor. At one point I was driving 8 hrs away to see a doctor who is awesome. I just couldn't afford to take a fewdays to drive down to see him for only a 10 minute visit really.
I've been researching a new drug that isn't yet FDA approved and I hope that he will prescribe it to me. A friend of mine on another website tikd me about it. Youmay or may not have heard of it. It's called LDN, low dose naltrexone. Barely any symptoms. And the results my friend has received from the drug are astounding. She says her pain is reduced so much. Her BM's went from 15+ down to like 3. I wish :)
The drug is being researched in line with MS mainly, but people are recognizing the benfits in crohn's and many other diseases.
Well I just thought I'd put that out there if anyone wanted to know of something new in the field of drugs. It's super cheap as well. the only thing is getting a doc to prescribe it to you. because it' not totally FDA approved. It's original use was to get heroine addicts off the drugs using a 50 mg dose, but for our use its like 2 or 3 mg a day. Just google it and you can probably find some good info on it if your interested.

Joan123
Regular Member


Date Joined Aug 2006
Total Posts : 191
   Posted 5/3/2008 6:33 PM (GMT -7)   
I have found that my best advocate has been my primary dr.  I think the trick is is to be with them long enough so they trust you and you trust them.  Maybe you need a new primary or ask your primary for referrals to new specialists.  As for your pain radiating to your back, have they checked for pancreatitis?  My son had that and that is where his pain was.  I was going to say perhaps gallbladder but I see you had that out already.

Mother of son diagnosed with Crohn's at 12 years old, Oct. '05.  Also has secondary adrenal  insufficiency, IBS, osteoparosis, psuedotumor cerebri and gastroparesis. Meds:Nexium(40mg/2xday); Prednisone(5mg/1Xday); Humira (40 m every week); Dicyclomine  HCL(10mg/2xday);Reglan (10mg/4xday); Celexa (20 mg/day); Diamox (500mg/2xday); Scopalomine Patch (1 every 3 days); Pamidronate (15mg infusion/2 weeks); Growth Hormone (daily injection), Multi-Vitamin w/ Iron;Vitamin D; Tums;Probiotic; Zofran as needed. Hospitalizations:  Oct. '05-Kidney Stone; Nov. '05-Pancreatitis; Aug. '06-C Diff Colitis; Oct. '06-removal of gallbladder; July '07-Gastroparesis; Nov. '07-Crohn's Flare/Gastroparesis and Kidney Stones; January '08-Kidney Stones.

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