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Crohn's Disease
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Posted 8/14/2012 3:41 AM (GMT 0)
Hi everyone,

new to this community and blog, ive been diagnosed with Crohn's since 2002 and currently my sister also both have Crohn's Disease. i was wondering if there are any doctors you would recommend in Orange, Riverside, San Diego area.

i also want to try LDN

so if anyone can recommend me a good GI that doesn't just immediatly resort to Humira/Remicade

thanks!!!

Post Edited (amien) : 8/29/2012 11:25:44 PM (GMT-6)

Posted 8/30/2012 5:13 AM (GMT 0)
Dr. Thomas Savides at UCSD is awesome! 619-543-2347. Also, Dr. Cosman at UCSD is a great surgeon, if the time comes that a resection is needed.
Posted 8/30/2012 5:24 AM (GMT 0)
Hi,
thanks for the reply.
why would you recommend him? i live an hour away from SD so id have to debate that. what medications are you currently taking? because i wanted to try LDN and alot of GI's ive been to wont.
Posted 8/30/2012 5:50 AM (GMT 0)
Riverside, Dr. Huang is my Dr. Haven't had an issue.

Scheduling appt's it usually is backed up like a month or more, but that seems the case with any GI Dr. in the area. When he schedules procedures though, they are scheduled very quickly. My EGD was scheduled within 2 days of him ordering it.

He is also very good to call back same day when I had to page him a few different times due to consistent pain and other issues and couldn't wait for my appointment.
Posted 8/30/2012 5:52 AM (GMT 0)
I should also note that he doesn't seem t push Pred as hard as I read about others Dr's doing. He is also good with giving me lots of samples of Asacol since I dont have drug coverage yet and its expensive.
Posted 8/30/2012 5:52 AM (GMT 0)
When I first met him my Crohn's was very bad. I wasn't on any meds. One week after meeting him I was in the hospital with my first stricture. He spent a lot of time with me discussing all my options. Was very hands on and really cared. He was understanding of all my concerns about side effects and surgery. I ended up having a foot of my small bowel removed and then decided not to go on meds. Unfortunately, my Cronh's was very aggressive and I finally started 6mp. I had a great relationship with him during my time in San Diego.

I now live in in central CA and drive 2.5 hours to see my GI at UCSF (the "top" GI in my city referred my to UCSF for a second opinion). Basically, I've had 4 GI's total and the UC GI's are by far more knowledgeable about what is availalbe and more open to my input (GI in my city didn't have any idea what Tysabri was).

I've tried 6mp (works but not good enough anymore), Humira (allergic to this), Cimzia (allergic to this), Asacol (makes my hair fall out), Remicade. I'm trying to decide between Tysabri, Stelara and 2 clinical trials my GI told me about yesterday. What is LDN?
Posted 8/30/2012 6:19 AM (GMT 0)
Stinky: thanks for the recommendation! ill definitely look into it! :)

crohinekim:
sorry to hear about your crohn's

oh at UCSF, thats a great facility, i actually live and go to school in SF but im from Southern cal, and parents live here taking a semester off to deal with this flare.
sorry to hear so many of those meds failed you, and hopefully you can find a regimen that works.
tysabri is that the ms drug, infusions and etc?what is Stelara?

the thing with the UC's, im not happy with where their research is heading (biologics esp with those black box warnings) ive been hesistant on alot of meds and my doctor said that if i did go to a UC their research would be on meds i wouldnt be interested in.

LDN: its low dose naltrexone, there have been studies done on crohn's disease and it shows promising results. it has little to no side effects, and is pretty inexpensive. i recommend you look into it and see if its an option maybe? i have an appt with a dr that prescribes it so we'll see.

and also in SF there's Dr. Thomas Cowan who's more into a hollistic and integrative approach and also uses LDN. i plan on seeing him when im back up there.

i also see a naturopath. but he said natural stuff take awhile to kick in and work, but to get inflammation under control with a medicine im comfortable with.
Posted 9/3/2012 4:51 PM (GMT 0)
Dr. Terdiman prescribes LND but, said he hasn't had much success with it. Stelara is an injectible (off lable) that you can take while on 6mp.

Yes, tysabri is the MS drug but, Dr. Terdiman says he has had great success with that drug. As long as you test negative for the PML related virus (which i did) then there is no risk to the fatal brain infection. Oh, so many decisions to make....
Posted 9/6/2012 4:15 AM (GMT 0)
It's my understanding that Dr. William Sandborn is in San Diego now. He is considered one of the worlds foremost experts in Crohn's and used to run the IBD Research Unit at Mayo Clinic. I have seen him as a patient and he is AWESOME.

You will see his name in a lot of package inserts for Crohn's drugs (Sandborn, W).
Posted 10/9/2012 9:53 AM (GMT 0)
What's PML virus and JC virus?
Thanks in advance.
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