Does your doctor really matter?

Was diagnosed with Crohn's disease at the Rochester, MN. Mayo Clinic a couple of months ago but had to get a local GI doctor for long-term med treatment & monitoring. Had tried Budesonide, Prednisone & Imuran, none of which offered much help but many serious side-effects. Still tapering Prednisone though.
I had to call the Mayo doctor because my local GI doctor said with regards several things "she was just guessing" and that they do not have a lot of experience in IBD. This even though when I made the first appointment told me Crohn's was one of their specialities.
The Mayo Clinic doctor said I need to be on Humira or Remicade. Remicade is off the list because my insurance lists it as not covered by my plan. Humira has to be applied for approval. Because of major complications from the first meds and my condition, they said I need a doctor with heavy experience & knowledge with Crohn's. Further the Mayo suggested some names of good GI doctors but either they are not covered by insurance or appointments are over three months out and they do not think I can wait that long for Humira.

Does it really matter if the doctor knows what they are doing with treating Crohn's or do I just need one that will write a prescription for Humira?
Reading reviews for GI doctors (healthgrades, vitals, etc.) have seen some scary reports from patients. Yes I know you have to take some with a grain of salt and some are fake reviews from the doctors but some have seen with many reviews saying no returned phone calls, won't answer questions, etc. so not sure what I'd be getting from them other than a prescription.

Thank You for any info you can provide.

I would get an appointment with a better doctor asap. Even if it's three months from now, get yourself on their schedule and THEN.... see if your current GI will prescribe the Humira. You don't have to tell her you're leaving her in a few months. If you trust the Mayo GI's opinion and feel like Humira is what you should try, then that's how I would go about it. It sucks, but the reality is, sometimes you have to play the game to get what you want. I'm not suggesting reckless behavior, but if a reputable doctor already recommended Humira, I see no harm in having your local GI write the script. They can monitor you until your appointment with the new doc. Is there another GI in your local practice that has a little more experience than your doc who is "just guessing"? I know GI's treat a range of things, but seriously.... how do they not have that much experience with IBD? That sounds a little off to me. Maybe it's just your current doc who doesn't know what she's doing.

The current doctor kind of avoided discussing Humira when I asked her about it on the phone last week. Not sure she would write the prescription. The Mayo said that is the next step and it should not wait too long to start. Three months didn't sound like an option. Besides, I would like to eat some more solid food myself without it coming back for a second tasting :(
Back at my original question, even if she would give me Humira, is it safe or wise to spend three months on it with a doctor that does not seem to know much in the Crohn's area? My reaction to the Imuran was extremely bad and she only guessed that it might be the cause and to "maybe" stop it. My first call she recommended I go to the emergency room for fluids.
The Mayo can't/won't prescribe me Humira (nor did they the Imuran) because there has to be a local doctor to monitor blood and visit if issues. I am not in Minn. Just went there for the diagnosis as three other previous GI doctors were having trouble with the diagnosis.

I've kind of exhausted any other doctors or referral places for a new GI doctor. The doctor I am seeing now advertises on the website Crohn's and when I called to make an appointment, they told me that is who specializes in Crohn's.

Already tried Entocort (Budesonide in my original post) and it did not help at all, just side-effects.

Located in North Carolina, just north of Charlotte.
Also was looking in Southwest (Cape Coral/Fort Myers) Florida, as I have a place to stay there. That is where the first three GI doctors (al by referral) were that gave me all sort of diagnoses and one wanted exploratory surgery "just to look around, maybe dissect a couple of lymphnodes."

Even the good GI doc that is three months out is not really local. They are 2-2 1/2 hours drive from here.

That study does not apply to me. I did not have a hepatitic reaction. It was all the other side-effects. I was so dizzy could not even walk to my mailbox, fatigue where I spent about 22 hours/day in bed, stomach pain (not the inflammation in my small bowel), short of breath. The Mayo doc said that was the lowest useful dose for my weight.

Where is your inflammation webjunk?

I cannot believe that in the Charlotte area there aren't a few good GIs who see IBD patients.

The Cleveland Clinic has a Florida branch that may suit you.

Webjunk, I live in charlotte. there are excellent GI's here in town. I currently have a primary with one Gi (who is part of the larger hospital system) and then a second one who we use as a consult at an independent group. the work together very well. I have had my resection surgery here as well. They are doing research and clinical trials at that independent group as well. Dr Hanson is the research GI at Charlotte Gastro and hematology. they have several locations around the city. My regular GI is not taking new patients anymore as he is splitting his duties with another GI. I have been with him for about 4 years and am so happy. he calls me regularity to check on things. in fact he just called tonight to review the latest MRI and input from the other GI. there are excellent GI's in charlotte.

Don't know about the bone marrow stuff. Never explained to me. My WBC was actually a little high (12.3) not low, so sounds like that wasn't it.

No doctor explains this stuff.

Or maybe some do, but none that I've ever come across. I've found it all out by trial and error; a mixture of bitter personal experience and learning how to find/interpret the medical literature.

WBC are white blood cells only; your red blood cells or platelets could still have been lowered. If the red blood cells get badly hammered enough, that will cause severe anaemia, symptoms of which do include dizziness, fatigue and shortness of breath. (In my case, I got bad restless legs when my haemoglobin dropped low enough - to 8 or 7.)

Basically, you should always have a full blood count test done, especially after starting new medication. It's important to get tested for anaemia (both iron and B12 anaemia) regularly with this disease, because anaemia is common for various reasons.

That's the ileocecal valve <_<.

Cannot help with doctors, as I don't even live in the US. So there is something I don't know after all :p

All right, so my bone marrow suppression theory is well and truly sunk in the water... :-/

As much as it pains me to say it, I don't know then. In my case, my blood cell count was affected. Might still be worth trying Imuran's sister med, 6MP, since I have heard of people tolerating one med better than the other. I could understand if you would be reluctant to, though.

mirowpl:
Any way you could write me directly so I could ask some specific questions? You can reach me through the contact page of my website: WebJunk.com

sorry been a busy day and tomorrow I am in heart cath test all day

Remicade is not approved by my insurance. Thanks anyway.
I'm just going to stop all the meds.. This is no quality of life.

In the last two years, have been through seven GI doctors & two Internists, over $30,000 and am worse off now (in part because of the bad Doctors) than I have ever been. Tired of playing Doctor Roulette.

I watched and dealt with my Mother a few years back. She suffered & died not from her cancer but the side-effects of the chemo. It turned out chemo was being given although the doctor determined four months before it would not help further. Found out from his records on the day we had to decide to have the ventilator removed. I don't want to go through anything similar myself.

In the past year found almost every med taken (Budesonide, Imuran, Levaquin, Zithromax, Ambien, Klonopin & others) have mainly given me extremely bad side-effects (including hospitalizations) w/o real benefit. Still on Pred taper but it also isn't working. When I was put under anesthesia in 2012 for a colonoscopy & upper endo, spent three days recovering. Surgery might be more a problem than a solution. My last colonoscopy was under Conscious sedation for that reason.

Have not really worked in over three months. Have lost weight could not afford to lose (had a low body fat % before from bodybuilding) although can't exercise anymore, hate the foods (mainly liquid/soft) I can eat and the pain I still get eating it. Spend most of my day in bed staring at the walls. Have always hated TV (can take limited amount), can't concentrate to read (used to read 2-3 books/week), don't play/write music which was my main hobby for decades. This is not a quality of life to me.
Just trying Doctors or meds to see if they are any good no longer makes my Top Ten list. And since Humira seems to be the only possible med left, it is worse. I have absolutely the worst needle phobia & fear. Have trouble even at blood work even with the smallest butterfly needle. Don't see stabbing myself with the pen and insurance won't cover having it administered. Having other health issues just seems to put a further limit on choices for me.