HealingWell
Search Close Search
☰

do you feel that your doctor neglects you?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/19/2008 12:06 AM (GMT 0)
Thanks, Munchkin. And you're right.
Posted 10/19/2008 12:31 AM (GMT 0)
I hope you find a way soon to get the treatment you deserve. My GI doctor is awesome even if he won't agree with me that pregnancy and hormones bring on my flares . . . hee hee (He always says if you want to blame it on that fine but I have tons of patients who are the same as you and have never had children, drives me nuts!) But he is always so nice and I get call backs right away with answers to my questions. He has even been really cool when I decide to take or not to take medications. When he is on vacation I have the on call doctors that have always been awesome too.
I think doctors feel you have no choice but to see them and forget about customer service. Or they just get too darn busy. I always call with anything that is new or bothersome about my crohns and I always say if you don't have time to call back that is fine but to just document the info in my file for my next appointment. Because Lord knows I forget a lot in the time between my appointments.

Hang in there!
Sally
Posted 10/19/2008 8:21 PM (GMT 0)
I have been with the same doctor for 20 years. He started as my GI and now he functions as my primary since he has shifted his focus. But I have seen a huge change in him and the way his practice is run. It is so much more of a "business" and so much less about the patients. When I was a new patient I was in the hospital having my gallbladder out. He saw my name at the nurses station and came down to my room to say hello and check in on me. I wasn't there under his care or for anything related to my CD. In fact at that point, I had only met him a few times. But he was a new doctor. Now, he doesn't even go to the hospital. If I am admitted to the hospita,l I am under a hospitalists care, not his. So instead of having my regular doctor, who knows all about my history, which, lets face it, is considerable for most of us, I have to start from scratch with a new doctor. Such a pain!

Every time I make a phone call to his office, I have to get past the "desk dragons". In the past, they all knew the "regular" patients. But they are so busy now that the patients are little more than a birth date to them. Even in the midst of a medical crisis, when I could be calling several times a week, they have no idea who I am. If I try to tell them, this is important, I need an answer right away, or this can wait, or whatever, they don't listen. It is like they are nothing more than robots trained to take messages. You would think they could pay attention and try to be helpful, but no.

So basically, Ivy, you are not alone. But I think it is more the staff than the doctors. When I am seeing the doctor and in the exam room, he is still the same caring doctor from 20 years ago, its just that medicine is a business now and it didn't used to be. sad
Posted 10/19/2008 10:56 PM (GMT 0)
Boy I feel at home on this thread. I've had so many problems with this "so called" specialist, it's unreal. It's good to know I'm not the only one!!
Posted 10/20/2008 12:04 AM (GMT 0)
My old physicians were like this. Not too long ago I went to Mayo Clinic in Rochester, MN and saw Dr. William Sandborn. He and his office were amazing. The IBD Research Clinic at Mayo Clinic has THOUSANDS of patients. When I call and ask to speak with someone, I usually get Dr. Sandborn directly on the phone (or his Nurse Practiotioner, Karen Hansen who is awesome) as soon as I tell them my name, they know who I am. They found an infectious agent in my GI tract called Whipple's Disease which is in ver advanced stages, so I am seen primarily by the Infectious Diseases Clinic at Mayo Clinic.

They are the same way. The only problem I had with them was I called and left a message for the Physician that I see, and was not told he was on Vacation. The next day his boss, the Chief of Infectious Diseases at Mayo called me to address the problem. I had also seen her while I was there. She apologized for them not transferring the call to her and addressed the problem. I saw how weel everything went while at Mayo, so when I came home I fired all of my physicians and started over.

I took the 24 page report from Mayo Clinic to a new Internist here and told her what I expect and how I want things to go. She said she completely agreed. She even agreed to send copies all of my visit notes to Mayo Clinic for Dr. Sandborn and Dr. Tosh (my Infectious Disease Physician) to review. She is great. I also told her from the begining that I have had a fatal infection for 3.5 to 4 years that went un-noticed and un-treated. According to Mayo Clinic I had less than 2 years to live from where I was.

She said she takes a complaint, treats the symptom; but thouroughly investigates the cause, which I like.

I guess in summary, I used to let my physicians treat me like that, but not anymore. At Mayo, the Doctor ordered a CT scan, it was done 2 hours later. He ordered a Colonoscopy/EGD (and found a tumor and removed it) and it was scheduled for the following day. I had a next-day Lumbar Puncture. It can be done, most are just too unorganized and dont care enough to do it.

Its not something we have to tolerate, because WE PAY THEM for what they do.

Post Edited (JasonCPhT) : 10/19/2008 6:11:05 PM (GMT-6)

Posted 10/20/2008 12:14 AM (GMT 0)
*sigh* Mayo sounds great, Jason.

"According to Mayo Clinic I had less than 2 years to live from where I was." - Wow. Will you be ok now?
Posted 10/20/2008 1:49 AM (GMT 0)
I believe all GI doctors should have a walk in my shoes day training course. I think they need reminding that we are humans who suffer regularly. They need to get a first hand perspective of a day in the life of a Crohn's patient. I know their field has alot more urgent calls than some fields of medicine, but it is the field they chose!! We didn't choose to have this disease and only want to be treated proffesionally and with speed!!
Posted 10/20/2008 2:38 AM (GMT 0)
WOW you all make me very thankful for my GI doc. LOL I had some issues with him a few months ago but I got him back on track now. lol
One thing I have never had a problem with is him returning my calls. I may have to wait until evening to hear from him, but he calls me
back before going home for the day. And if he doesn't then his nurse does. If I have simple medicine questions then his nurse will call me,
but if I'm super sick and he know's I need him, then he calls.
Posted 10/20/2008 3:10 AM (GMT 0)

ivy6 said...
*sigh* Mayo sounds great, Jason.

"According to Mayo Clinic I had less than 2 years to live from where I was." - Wow. Will you be ok now?

I will be fine.  I have to take strong antibiotics for 2 years, uniteruppted.  We started with a PICC line and IV Ceftriaxone.  I had enough of that to CURE Gonorrhea (sp) 112 times over in a 14 day period.  Now I take 2 Tablets of Bactrim-Double Strength 2 times a day.  I have to return to Mayo every 90 days for 4 years.  In November Cipro or Levaquin should be added to the regimen.  The disease is cureable if caught and treated, and has a 100% mortality rate if not treated.

The doctor did say, though; that I was diagnosed in the end stage, so they arent sure I will completely recover or that we just arent buying time.  My Cerebral Spinal Fluid was positive for the bacteria, which means my brain has been infected.  But on the other side, I feel 10x better than I did 4 months ago.

They say I most likely HAVE Crohn's Disease, but its in complete clinical Remission.  I had to stop all meds for because we are now treating an active, life threatening infection.  There was the question of being admitted to one of Mayo's Hospitals and receiving a Xigris infusion, probably 3 of them.  If my CSF is still positive, they most likely will; but that is ominous.  Xigris is used only in ICU when a patient is expected to die within 72 hours from sepsis, or will die from this type of infection without use of the drug.

I was told more than once, if I had let myself stay with inadequate response to my concerns, I most certainly would have died.  One Physician at Mayo said, "it would have been diagnosed in a year or two, by the Medical Examiner in Houston."

My neuro symptoms have not gone away yet, but alot of the others are better.

Posted 10/20/2008 3:22 AM (GMT 0)

I left a doctor for the same reasons. She never returned my calls; her office staff seemed to think that they were the doctor, and they either gave me advice without checking with her (!) or (on the basis of a single, scrawled word on my chart) told me, "She says that your test is ok"--and got huffy and rude when I repeated the detailed questions I had for her that remained unanswered.

When I finally got through to her after being diagnosed with a perianal abscess and fistula by an emergency referral from my family physician to a colorectal surgeon, I told her that I was very scared. She just told me, "Oh, don't be scared. You have such a great attitude--you'll be FINE." I was definitely fine--AFTER I switched to another doctor.

Posted 10/20/2008 5:40 PM (GMT 0)
This is a great post because clearly so many of us have or have had this issue.

Ivy, I wanted to add in that there is a big difference between being impolite and being assertive. The former is rude, the latter is being an advocate for yourself. If you have a hard time getting what you want from your doctor and can't switch doctors, perhaps you can determine (by 'looking inward' or by asking trusted friends) whether you are being assertive enough. If not, you could ask a friend who is a good negotiator for advice, or try checking out a self-help book from the library.

I think the most important thing is to see if your doctor's behavior is negatively affecting your quality of care. If it is (for example the doctor makes mistakes like others have mentioned here, isn't available in an emergency, etc.) you should make sure to bring this up with your doctor and ask him/her to come up with solutions that work for you both.

A good way to do this is to write down a few 'key messages' - 3-5 specific points you'd like to make - and bring them with you to your next appointment. And don't let the doctor leave until he/she has answered them. They could be things such as "I feel you rush me through appointments; I feel I'm kept waiting a long time; it's difficult for me to reach you in emergencies or when I have questions." As bad as our healthcare system is, and as cocky as SOME doctors can be, my hope is that your doctor will respect your valid points and give you real solutions (such as "if you have trouble reaching me, here's my pager number; I didn't realize how long you were waiting, let me see if I can make sure you get the first appointment of the day" etc).
Posted 10/20/2008 5:51 PM (GMT 0)
Yep, we've all had the suck doctors. I am doing what I can to return to this great PC doc I had from childhood and up. At least I KNEW he cared about me (he also is the primary care for my aunts and uncles and a couple cousins). Sometimes, I wonder if he wouldn't made sure to figure out what was wrong with me before I spent three months with a lil infection eating away holes in things. Anyhow, he's the only doctor I can remember actually trusting. I'm going to go to him once the insurance kicks in. Then, I'm going to either make an appt with the GI I don't remember or get referred.

I had this chief of vascular surgery who, every time we asked a question about my upcoming surgery, he'd walk out of the room. He never answered a single question. He was a real jerk. At KUMed, but I gotta say this about the guy. I felt ten times better after I healed. It was my first resection, he also did something to my colon. I can't hate the guy who sucked at answering questions. Meanwhile, at that time, I had this GP who didn't listen to me for two months of visiting every week for pain and illness. I had a swollen disc in my spine but never listened when I said my back hurt...until the day I had real problem getting off the table. He barely touched the spot on my back and my knees crumpled in pain.

If I were you, I'd evaluate all your options.
Posted 10/20/2008 11:06 PM (GMT 0)
Thank you, everyone, and especially Newlywed, for your thoughtful and helpful posts. Newlywed, you're right, perhaps I do need to have a more assertive discussion with the man. I'm not sure that "I feel you rush me through appointments; it's difficult for me to reach you in emergencies or when I have questions" would work for me, but I could certainly say, "I feel your receptionists need to take more care to ensure that urgent calls are answered; perhaps they could institute a triage system".

It really is bad that this call wasn't returned. The receptionist pressed for details, so I was having bad d and was soon to be in a serious situation because I couldn't leave the house, lived alone, and couldn't get food in. That should have been a red flag, don't you think?

Thanks again,

Ivy.
Posted 10/21/2008 12:18 PM (GMT 0)

I have been very lucky in with my medical care.  But please do not confuse that statement with thinking that I have had nothing but great doctors...I am batting (sorry for the baseball metaphor but being in the Tampa Bay area this week has led to it) about 500.

I have had to learn to be well informed and well educated as well as out spoken...first doctor (supposed to be one of the best in the city) diagnosed me as IBS and I just nodded and followed his words of wisdom....then I caught on that every one of his patients had a colonoscopy and endoscopy every 3 to 6 months and we all seemed to be put on prilosec...IMO it was just a high cost test mill run by a doctor who was feathering his retirement bed.  But eventually I got to where I told him how I felt and what treatments I felt were worthwhile and which were not. I was not getting better so I told my GP I needed someone new....he hooked me up with one of the heads of Gastro at USF college of medicine...supposedly one of the top 10 in the nation (how many times do we hear that?) He was better than the first and I learned a lot.  the biggest problem with him was that he was constantlt teaching the residents and I was just another lab rat.  He would however discuss everything with me because he used our discussion as a teaching time with the residents.  I couldn't get a good dx from him and was still not getting better so I went back to my GP for help in finding another gastro.

He got me hooked up with a Doctor in Gainesville, Fl who is the head of the studies unit for gastro at Shands Hospital/University of Florida.  He was great...he dx'd me right away as CD...got me started on an experimental drug that turned out to be Tysabri and put me on a treatment plan that brough about almost full remission immediately and for over 2 years.  he explained everything...he would call me at home after my infusions....he gave info to research on my own....we discussed every step of the treatment before we took it and he always asked me if I was comfortable with OUR decisions.

Once the Tysabri was pulled off the market I slid downhill fast and the 4 hour RT drive was to tough...so the gastro in Gainesville found me a doctor close to my home, called him, discussed my cse with him and as long as I was comfortable with the switch I transfered my care to the new doctor.

My current doctor, over two years now...maybe even three...discusses all treatment with me.  ihave the final say.  if I find something new I send it to him and we discuss it at my next visit.  he sends me new reports as well.  recently I have taken a turn for the worse (major blockage) he has called me at home 3 times in the last 4 weeks.  He has let me come in to his office twice w/o an appointment in the last 4 weeks.  We do not always agree on treatment options but he always lets me have the final say.  He tells me his job is to be sure I am fully informed about my illness and all treatment options and then it is his job to give me the best medical treatment he can based on what I will allow.

Over the last several years i have found the courage to question my doctors and their treatment...to not accept anything less than personalized care...BECAUSE IT IS VERY PERSONAL....I also have learned not to accept a dour or negative doctor...I need positve and aggressive care and we all deserve the best care available...anything less we should just walk away and find another doctor.

Posted 10/21/2008 1:17 PM (GMT 0)
Ivy,

I can relate to living in the middle of nowhere and having a very limited choice of doctors. I live in a city now, but when I was in a small town in Wyoming, I wound up going through 4 doctors in town, before finding one in a neighboring state. It took me two hours to get there for appts, so I'd treat the day as my "big day in the city". I'm glad I don't have to do that anymore.

Being assertive with your doctor is imperative if you feel that you aren't getting the care you deserve. There is no excuse for anyone to have wait longer than a copule of hours before their doctor returns a phone call. I recently called my GI and wound up having to leave a voice mail. This was around 10am. They are usually really good about returning calls, so when I hadn't heard from them by 2:30, I called again. The receptionist had no idea that I had called earlier, and there was no record of my message. I didn't view myself as being a nuisance, I was simply looking out for myself and making sure that I would be able to get the scrip called in that I needed.

If you have been seeing this same doctor for a long time, he would probably understand if you vented a little about the delay in returning phone calls, or if you asked for a few more minutes of his time at you appointments. Another thing that you can do to make sure you everything out of your appts that you need: Go in with a list of what you want to talk about. I did that with my current GI, and he made sure that we addressed everything that was on my list before the appt was over. I am not the most assertive person myself, but when it comes to my health, no one else is going to stand up for me, so I have to force myself to advocate for myself.

You mentioned earlier that your doctor appreciates that you are so understanding about things. I think that maybe he is taking a little bit of advantage of that. Maybe you could try to not be as understanding a couple of times and see if that affects his attitude. I hope that you can get this worked out to your advantage soon. It is bad enough to have an IBD, but to feel neglected when you are so vulnerable...there really is no excuse for your doc putting you through that.
Posted 10/21/2008 1:51 PM (GMT 0)
Absolutely, I think they neglect us! It is so frustrating too! I'm a bit sour to this subject especially right now but have had this concern for some time. I'm so sorry that you are having to deal with this on top of your illness. We trust them with our lives and they should realize that. If not why did they go into the medical field. I hope you find some comfort and resolution!
Posted 10/21/2008 2:20 PM (GMT 0)
I find my regular doctor treats me well but I have real problems with the specialist. They always seem to be in a hurry and I seldom get called back if I need help. I sometimes get nurse Ratchet returning my call instead. But I do understand. Have you priced golf clubs lately ? Then there's the Beemer, or Hummer and they only get a few miles per gallon. The alimony payments to the first and second wife are hard on the pocketbook. Then there's the new little blond nurse,,,you know the one,,,when she turns her head and the wind blows through her ears it sounds like an empty coke bottle,,,that one..Must cost a bunch to keep her interested in an older balding grumpy doctor. Price diamonds . Thats why I prefer women doctors. They have much more compassion for us sick people and there heads are screwed on much tighter. Trouble is , there are not that many of them around here. I'll bet any guy in here is much less afraid of the sound a latex glove snap makes and the words lean over the table when it comes from a woman doctor. Plus they have smaller fingers in my opinion. Yep, we need more women doctors.
Posted 10/21/2008 4:12 PM (GMT 0)
Sniper, I'd be lying if I said that I didn't agree with you 100%!
Posted 10/21/2008 6:03 PM (GMT 0)
Ivy-

I had a great GI, until I changed jobs. New insurance, new location, over the last 3 years, I have gone through 3 GIs. One's who didn't care about the pain I was in, another who just loved to run tests and ran every one that he could think of and still treated me like a number. The third one I am on came to the ER and yelled at me about coming to the hospital for unbearable pain and acted like it's all my fault.

I feel your pain!
✚ New Topic ✚ Reply
12