Need advice - time for a new doctor?

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!

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...

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!

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

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! 

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!

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

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,
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.

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