• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Does the Doctor matter?

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?

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 was told 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.

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.
 
Why don't you get the Humira prescription from the Mayo Doc or are you concerned with the drug as it is a very powerful with many possible side effects?
 
Your GI is important, you need to have someone you feel you can trust in and communicate openly with, someone who really specializes in Crohns is best, if they are guessing then it isn't their specialty.

Now with that said there is a certain amount of "educated guessing" with CD. Even the best GIs can't determine which drug is going to work for you right out of the gate, it takes some trial and error, and that is okay as long as you feel your GI is on top if their game at making sure all the milestones(tests for symptoms, lab work etc) are being met.

Since the Mayo doctor is recommending a biologic maybe you could relay that info to your local GI and have her prescribe it, so you can go ahead and get started. In the meantime, you could be searching the other GIs to find one that meets all of your needs.

Lastly, we do have a doctor directory here. Members are free to fill out reviews for their doctor or doctors they have seen. The tab is at the top of the page but I linked you to the page for doctors in your area, maybe you could use this tool to help you as well.

http://www.crohnsforum.com/doctor/us/nc/

I hope you find remission soon!!
 

valleysangel92

Moderator
Staff member
Yes the doctor is very important, essentially you have to trust this person to make the right choices with you and for you, you have to feel that if ever you were incapable of making a decision then they would make the one that is the best for you in every respect.

It is important that you feel comfortable with whoever your seeing as it will potentially be a frequent thing, you may at the least see this person every year until they retire or you move, that's a long time to be stuck with someone you don't get on with and it is very stressful to change doctors all the time because you get fed up of the one you have.

Take the time now to find a GI you feel comfortable with, one that you know you can trust to carry out medical examinations and tests and one you feel you can speak openly with about your needs and wants, remember that you need to have a good professional relationship with this person in the long term and they are not just a way to get your next prescription.
 
bobisacrohny: The Mayo can't/won't prescribe it. They tell me it has to be by the doc that will be monitoring the blood tests & local to go to for issues. The Imuran was prescribed by the current local doc and she does not sound like Humira is on her list. Also I am not in Minn. Only went to the Mayo for the diagnosis because the first three GI doctors had all different diagnoses and one wanted exploratory surgery "just to look around, maybe dissect a couple of lymphnodes." Another reason I have become afraid of these doctors.

Clash: The directory reviews here are not local to me. "Guessing" which med to use is one thing. Guessing what to do or identify when something goes wrong has me concerned.

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. My first call she recommended I go to the emergency room for fluids. In the end she only guessed that it might be the cause and to "maybe" stop it.
 
Sorry, WebJunk I was just going by the location under your profile pic, Concord, and the five listed there.

Have you discussed what experience your local GI has with Humira? If you don't feel comfortable maybe you could do a pred taper while you waited for an appt with one of the GIs you mentioned that had appts three months out.

I would think if you don't trust your GI then choosing another is the best option. You can have allergic reactions to Humira, but since you do the shots at home I'm not sure how that is handled, whether by GI or ER, I would guess it would depend on severity. Our experience is with Remicade so it is a little different since you receive the infusion at a IV lab with nurses overseeing it.

Good luck in finding the answers you are looking for.
 
I have had multiple GIs, and luckily I trusted them all. I will say, I have had times when it was pretty darn important too. I had a bad reaction to Imuran (white cell count dangerously low), I had "pocket" of fluid once that had to be treated, surgery, med changes... I think all of these are important to trust your MD. I don't even think you have to like him/her much, just gotta believe they know what they are doing and have concern for your well being. I love my Doc now, he asks questions AND actually listens to my responses!
I also think that treatment with Crohns can be as different as we all know our bodies and symptoms are. I think there is an art to it, and you want someone you feel like "gets it".
Wishing you well, and keep us posted.
 
Clash: Yes there are five doctors LISTED for Concord. But no REVIEWS. Why do I mention the difference, one of those LISTED I visited and was a complete waste of time for Crohn's.
I thought less of him than the first three idiots, I mentioned before.
 
Ahhh... sorry I didn't even notice they weren't reviewed. I haven't had to access that part of the forum. Hope you find someone you feel confident with soon. You may want to see if the CCFA website or see if there is a local chapter of CCFA and see if you can glean any info on some good GIs there.
 
Try calling your insurance company and explain the problem that you are having finding an experienced GI, and ask them for a recommendation. They will either know one or they will run from the possibility of making a mistake that would leave them libel .If they don't know anyone ask if you can go outside your normal area. I bet they will let you. I use Aetna and they have been in my corner all the way with this CD/UC. You need a GI that you trust and that you can talk to. I text my GI and he always responds quickly, but I don't abuse this and have only texted him twice in three years and both time I ended up in OR shortly there after. I go thru his normal office channels for blood work and appointments ect.
There are good GI's out there.
 
I hate talking about the "I" word. My insurance is out of Florida. Crohn's is an automatic denial here (self pay, not employer) in North Carolina, maybe elsewhere so stuck with what I have. (w/o talking politics, might change in January) So they have no recommendations out of Florida. They have not been helpful in Florida either. Remicade is not covered at all was already told and Humira will need my next GI doctor to make an application for possible coverage.

While my house is in NC, I was caregiver for my Father for six years in Florida until he passed away so had gotten insurance there. Was lucky to get even that after several years as I had other pre-existing conditions and had to sign a rider for this policy.
 
I'm also in NC. I'm not in Concord though. I see a GI in Gastonia who I've been with since 2011ish. He is a good doctor and really seems to listen. Only occasionally have problems with them calling back right away. I'm on Humira so he will write you a prescription. I know it's a pretty far drive though. Hope all works out and you can find a good doctor.
 
His name is Dr. Watkins. He's at Gaston Gastroenterology. He's the only one there, but they don't ever seem to be very busy and I never have a problem getting in.
 
My current GI doctor has applied the paperwork for approval of Humira. But she also said my condition is where I need to find a doctor more specialized in Crohn's. So guess I really need to find another doctor.
 
Top