Need advice - time for a new doctor?

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ALgirl
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Date Joined Mar 2010
Total Posts : 105
   Posted 4/3/2010 11:03 AM (GMT -7)   
I am wondering if I need to find a new doctor.  It is very difficult to get in touch with his nurses.  They never answer their direct line and when I leave a voice mail I have not received a phone call back within 24 hours and usually end up calling again.  That is what happened this week when I had what I thought were abscesses.  I called and talked to the nurse but my doc was on call that day so she told me she would talk to him in the morning when he came in.  She never called me the next day.  I called the next morning and she said that she didn't get a chance to talk to him about it the day before.  What???  I called stating that I had fever and 2 places draining bloody fluid and she didn't get a chance to talk to the doc?  She worked me into the schedule on that day so I went in and waited 3 hours in the waiting room (in terrible pain the whole time with the back pain that he says is maybe sacroiliitis) before getting called back.  When she took my BP it was high and I have never in my life had high BP.  She said it was probably because of the pain I was in.  He says I do not have abscesses but some kind of skin condition that bleeds and is sending me to a dermatologist.  It is now draining a lot more and larger again.  I believe this is an abscess.  I am also afraid this has something to do with the back pain.  I am in so much pain and can hardly stand to move.  I need some advice!

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper


Stef17
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Date Joined Feb 2003
Total Posts : 1811
   Posted 4/3/2010 11:42 AM (GMT -7)   
Can you go to the E.R.? If you are in so much pain that you can't move, maybe you need to be seen and treated immediately. That's what I would do, especially after your GI's lack of response. If you have enough nerve I would talk to your doc about it and tell him that you understand he has patients other than you, but you are in a situation that requires immediate care and you have had extreme difficulty getting in touch with him. It is unacceptable that his nurse said she didn't get a chance to talk to him. What kind of B.S. is that? If you don't have the nerve to talk to him, shop out another GI and ask them directly about how it works if you call the nurse and getting a return phone call. Without bashing your other doctor, just tell them that this is why you are switching because of lack of care and you need a doc that is going to get back to you within 24 hours - a reasonable time frame. The only way to get through is find a good office, or threaten the office you currently have. Sadly, it depends on if you feel like getting a little "loud" or nasty with them. In the mean time - go to the E.R. and get some help if you are in that much pain. Please keep us posted. Hang in there!!!

grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 4/3/2010 11:44 AM (GMT -7)   
I'm sorry you are hurting so bad! I think I would honestly take myself to the ER, or at least an Urgent Care if my Dr did what yours did. I also think I would find a new Dr if you have no faith in he or his staff to help you when you really need it.

I am at this point also. I am just waiting to get my Humira started (which I have been waiting about 6 weeks for) then will try someone new. I feel like if I don't stay on top of them, I get nothing done.

Maybe if you go to either ER or Urgent Care, you can get recommendations for someone else. After all, who knows them better then people who have to deal with them on a regular basis...
Dx'd w/ Crohn's in 1979 at age 14, have had minor flares throughout the years, but mostly kept in remission. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. Was on Pred. Dr. wants to try Humira...
Currently just take a multivitamin, calcium, magnesium, and fish oil.


gumby44
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Date Joined Nov 2007
Total Posts : 4100
   Posted 4/3/2010 11:55 AM (GMT -7)   
My GI's office would never treat me like that! Do you live in a town where you have other choces?
51 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- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 4/3/2010 12:03 PM (GMT -7)   
Thanks everyone for your replies.  I live in a pretty small town and all of the gastroenterologists are together in one practice, so I am assuming that if I wanted to switch to one of the others it would be awkward since they are partners and maybe since they are partners one would not want to question the other.  I don't know what to do but I am losing faith in this doctor lately.  I just want to feel better!

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper


nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 4/3/2010 2:24 PM (GMT -7)   
If they're all in the same practice, switching to another doctor may not make much difference--unless the doctor's nurse is part of the problem. And that's if she's only assigned to that one doctor, which may not be the case. I don't like their unresponsiveness to what's clearly a critical situation (where you said the magic words: fever and bleeding). But if they're the only doctors in town, I'm not sure what you can do. All I can suggest is that you go to the ER when something like this happens (and make sure to let them know, when you sign in at the ER, that you're there because your doctor hasn't responded to your phone calls). But, of course, that's assuming that you have insurance that will (mostly) cover your ER visit.

Any better doctors in the next small town over?

PV
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Date Joined May 2006
Total Posts : 1177
   Posted 4/3/2010 3:37 PM (GMT -7)   
You sound like you're in a lot of pain. Getting in to see new doctors - dermatologists, rheumatologists, etc. takes time. As always, even though new patients who are actively suffering are quite often prioritized last by doctors because they don't have an established relationship with you. I'd go to the ER, to get some immediate treatment, and to get some pain management. Also, at the ER, they set you up with follow up appts with doctors like dermatologists and rheumatologists who are required to see you in short order. So, that's what I'd do. Don't suffer through the pain.

And yes, you need to shop around for another GI. We had to do this for my hubby. He would not have landed in the hospital 2 years ago (IMO) if his GI had been more attentive and available, and his nurse would actually call the doc when we called in with problems. The nurse was more interesting in protecting the doc's time off, than giving patients good care. Fortunately for us, we found another doc in the same practice, who is wonderful and timely, and his nurse is also great. They use technology really well, and just via text messages can communicate with each other, no matter where he is, and get back to his patients very fast. This nurse went on maternity leave, and boy did we feel it. His replacement nurse was not nearly as efficient or caring, so the nursing staff play a huge part in how helpful and available your doctor is.

You deserve better than you're getting. Try another GI, even if it is in the same practice. It did work for us. But in the meantime, get to the ER!

Hope you feel better soon honey.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


qwijybo
New Member


Date Joined Mar 2010
Total Posts : 8
   Posted 4/3/2010 7:32 PM (GMT -7)   
I would look for a new doctor. I actually did just that. I was having a hard time contacting my old GI, and when I did he kept telling me to wait another two weeks and call him then. Since his practice was the only one in the county where I live, I decided to try a doctor by my office in NYC. I can't believe the difference! My new GI is amazing! Either she or her nurse responds to my phone calls and emails usually within one business day or less, and she has called me even without prompting just to see how I was feeling. She also once called me on a Saturday morning (and she doesn't have office hours on the weekends!).

Never forget that you are your own greatest advocate when it comes to your health, and if you feel like you are not getting the best treatment you can, go elsewhere. Think of it this way: if you went to a restaurant, and you had to wait 2 hours for your food, the waiter ignored you, and when you got the food it was awful, would you keep going there? Of course not! You would go to another restaurant.

I suggest going to your insurance company's website and doing a search for other GIs in your area that take your insurance. Make an appt, and then fax a records request to your old doctor's office so that they have all of your medical history when you go for your first appt.

Good luck. I hope you find a doctor that will really care about you, and your health.
28 year-old female
Dx with Crohn's in 2007, although my issues have been lifelong.
Previous medications: Pentasa, Keflex, Asacol, Lialda, and Entocort
Currently on: Prednisone, probiotic supplement, multivitamins, store-brand OTC Zyrtec and Nasonex (for allergies)


ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 4/3/2010 8:12 PM (GMT -7)   
Thanks so much!  You folks are so helpful!!! 
 
Qwijybo, I can't believe you have a dr that called you on a Saturday.  She sounds great. 
 
Nawlinscate, I think that particular nurse is assigned to only my doctor, but I am not 100% certain about that.  He has 2 but I usually end up with that one unfortunately.  I like the other one much better!  I don't think that she is actually a "nurse" anyway.  They use that term loosely in the dr offices in the town I live in.  Usually these people are assistants that have completed a 9-month or so course at the business college, not nursing school.  I am going to check into the doctors in other towns nearby.  We have a much larger town with tons of doctors and a university hospital about an hour away.  That is where a lot of people go around here.  I was just trying to stay closer to home.
 
I hate going to the ER because it is a $100 copay every time, and since February I have had to pay that 4 times already (it was the same copay for every outpatient test like colonoscopy, etc too).  I am trying to make it through the weekend especially since Easter is tomorrow.  I am trying to make it as normal as possible for the kids.  It was hard on them already with me being in the hospital recently. 
 
PV, you are definitely right.  I would like to think that if the nurse had actually told the dr about the problems I was having, surely he would have wanted me to come in.  I think it was very irresponsible to "not have time" to talk to him about his patient with fever and bleeding! 

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/4/2010 9:13 AM (GMT -7)   
Where are these wounds at and what do they look like? I am wondering if you might have a skin condition that is associated with Crohns. One of our mods suffers with pyoderma gang.... (sorry don't know the full name) and she said that it is very painful.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 4/4/2010 10:07 AM (GMT -7)   
I worked in a hospital office that ran eleven different medical clinics, at one time in my life. Here's my immediate suggestion: Call and ask for a brief visit with the Office Manager. Speak with her calmly and pleasantly, but firmly. Tell her that you've been very unhappy with the lack of response from Dr. Whatsisname and his 'nurse.' Let her know that you called in to report fever and bleeding--and everything that happened after that. Then tell her that, because of these incidents, you're considering switching doctors--and that you'd really like her recommendation as to which doctor in the practice would be (and would have a staff that would be) more responsive in this kind of situation.

My husband and I have had great luck in talking frankly with Office Managers. They know everything that goes on in the office. If they're decent human beings, they'll usually know which doctor/nurse will be right for you. If the Office Manager gets defensive, angry, or argumentative with you, then there's a problem with the entire practice. Go to the big town next door and find somebody else!

I went through three lousy GI doctors before finding the wonderful one that I have now. Good luck with your search!

ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 4/4/2010 11:56 AM (GMT -7)   
One of them has already healed but the other one is worse now.  It is getting larger.  It is right at my tailbone area.  It is bleeding more today too.  It just looks gross to me.  I can only see it in the mirror so I can't really see up close what it looks like.  It just looks like a large red place and there is a tiny spot that looks open and draining.  It is painful.  My back was worse this morning.  My husband had to help me out of bed because it was so stiff and painful.  Maybe I do have sacroiliitis.  I am just so frustrated right now!  I have never heard of the pyoderma condition.  I will look that up.

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/6/2010 10:33 AM (GMT -7)   
Hi there
i am the mod that has the pyoderma gangrenosum which sure sounds like what you might be facing
it is linked to crohns but it is rare
the pain n burning is tremendous i remember that i also have had sores break out on bones n joints that went right to bone n oozed pus n blood
its ulcer like and it started after i had my hysterectomy
there is a biopsy to have testing for this
i will keep you in my thoughts n hope it is not that
keep us posted
lyn

just a lil sidenote on this i have low bp n everytime i had these sores my bp was high
..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

I Refuse To Give Up....Others Are Worse Off Than I Am

Donate to WWW.HealingWell.com
MEDS..Lyrica..Dilatin...Pentasa...Folic acid....Ativan..,Diazapam prn..Trazadone at HS..T 4s PRN

NEVER GIVEN UP NOR IN


ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 4/6/2010 6:06 PM (GMT -7)   
Thanks Lyn!  That is what it sounds like to me.  That is exactly how mine is.  It looks ulcerated now.  The BP deal is exactly like me.  My BP is always low but it was high on the day I went to the doctor about the sores.  My doctor referred me to a dermatologist and I saw him today.  He took a culture.  I asked him about the pyoderma g. and he said he did not think that was what I had because it usually affected your extremities.  He thinks it is either abscess or what he called "cutaneous Crohn's".  Is that the same as an enterocutaneous fistula?  I googled cutaneous Crohn's and found this article: http://www.ijdvl.com/article.asp?issn=0378-6323;year=1998;volume=64;issue=2;spage=80;epage=82;aulast=Criton 
 
Has anyone ever heard of this before? 

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper


mom-who-hurts
Regular Member


Date Joined Mar 2010
Total Posts : 28
   Posted 4/6/2010 8:34 PM (GMT -7)   
My dermatologist brought up the term "cutaneous crohn's".  It's a skin condition that pathologically looks the same as the pathology in the colon in Crohn's patients.  I have granuloma lesions on my skin - on my feet and elbows.  She said it could be "cutaneous Crohn's" and biopsied the lesions.  It turns out my granuloma's are just something called granuloma annulure (sp?) which she said could still be related/auto-inflammatory- to the GI troubles I have had.  ( i am still not diagnosed....just in wait mode for test results and more testing)  But they were able to rule out the cutaneous Crohn's.  From my understanding, it's a rare occurance in Crohn's patients...and affects the skin in far away places from the colon/bowel.  The other term for it is "metastatic crohn's."  In fact, I have read a couple of medical journal articles online about patients that were diagnosed with Crohn's from these skin lesions that were biopsied and then after the fact had colon tests that confirmed the diagnosis.  Either way, it sounds like it's related one way or another to your condition.  Oh, and cutaneous Crohn's is not the same as a fistula from bowel to skin that you asked about.  Both are a complication of Crohn's though. 

ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 4/7/2010 12:05 PM (GMT -7)   
Well, the nurse was supposed to call me and let me know the results of the tests that I had done Friday.  Since it is Wednesday I decided to call the office as I have not heard anything from them.  I talked to her and she said everything came back normal.  So I asked, "so there was nothing wrong on the x-ray"?  To which she answered there was minor degenerative joint disease of the SI joint.  Would this be a sign that I had sacroiliitis?  I am still in so much pain.  Would minor arthritis cause so much pain?  I am so frustrated.  They had not even shown the reports to the doctor.  They were just treating it as normal.  I don't consider degenerative joint disease in a 34-year-old normal, but of course I am not a doctor.  She is supposed to show him the report and ask him what he wants to do, which will probably be nothing since she says it was "minor" and at first she said "normal".  Does anyone know what would show up on an x-ray for sacroiliitis? 

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 4/7/2010 1:36 PM (GMT -7)   
ALgirl,
If it's degenerative then I don't think it would be considered sacroilitis. I first found out when I was in my early 40s that I had degerative arthritis L5 S1 , which is the tail end of the spine. I've been dealing with it with physical therapy as I said previously. I suppose some day I might require surgery, but as long as occasional PT works I'm all for it. Can you get them to refer you for PT, it's worth a shot.
 


ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 4/7/2010 1:50 PM (GMT -7)   
Who knows if I can get them to do anything.  At this point I am just fed up.  She said something about sclerosing of the SI joint and something about the joint space but I don't remember if it was widening or narrowing.  When I looked these things up they were signs on x-rays of sacroiliitis.  Maybe PT would help.  Right now I am just so tired of hurting all of the time.  Did you ever have any other treatment for the degenerative arthritis, lamb61?  I just don't know how to cope with this much pain daily for the rest of my life.

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/11/2010 9:42 AM (GMT -7)   
I have suffered with PYODERMA GANGRENOSUM for years directly related to my crohns
the sores are usually on bones n joints go right down to the bone
pus n weep n the pain is excruciating
with this taking a swab nothing grows
thats one way the dermys dx it
the other way is sight of sore its like ulcerative and has red or bluish rings around it the sores have come out so much in past with stress and such
i have had iv meds for this rocephin so many times and vancomycin which ultimately led to my being deaf now
ask yr dermy about this
a new dermy i might add one open to discussion n yes sores go on extremeties moreso but occasionally not
it is not something they talk about alot
as its very mis dx and misunderstood
old dermys know of it more i hv found for me personally
there is also another condition simuliar to this but in any case it needs to be treated
be well
lyn
..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

I Refuse To Give Up....Others Are Worse Off Than I Am

Donate to WWW.HealingWell.com
MEDS..Lyrica..Dilatin...Pentasa...Folic acid....Ativan..,Diazapam prn..Trazadone at HS..T 4s PRN

NEVER GIVEN UP NOR IN

Post Edited (Howlyncat) : 4/11/2010 10:49:30 AM (GMT-6)

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