UCLA IBD center

Has anyone had experience with UCLA IBD Center?
They seem to take a more holistic approach than other programs. I live in northern CA and am not happy with the resources in this area and had heard about this center. This is for my son who is 27 years old and has been suffering with UC since he was 14 years. He is refractory to most typical meds and was frankly "overdosed" on steroids when he was 14-15 years old. We have tried every alternative doctor and method and I am not in a position to waste anymore money.
Please let me know if you know anything about the UCLA program.

Sally

Hi Keith,
My son has been on the full array anti-inflammatories (up & down), corticosteroids to an extreme (80mg IV when he only weighed 80lbs), azathioprine, variety of antibiotics. He has been in a low level flare practically all his life. He did have a few good years toward the end of high school and beginning college. He has a very complicated health history pertaining to major jaw surgery with many complications the last few years. Now he is in a flare that won't quit. Since he is refractory to many meds ( including steroids), he has taken to the alternative route. This seemed to work in a low level way, he never returned to his robust self except for a couple of high school years. He currently is trying slippery elm, isatis cooling which had helped in the past and a couple of other alternative items. No prescription ones at this time. I agree about the cost -benefit of time & money. We have doled out more money than I would like to say on the alternative options. At this point, what used to work is not, feeling at my wit's end.
Sally

It looks like at UCLA that they use a combo approach-the usual scale of meds, nutrition, probiotics, etc. I do think he would probably be a candidate for Remicade or another immuno-modulator because he needs to get his life back. I have read there is a time-limited aspect to Remicade in that it works for only so long and then you need to move on to another drug family or surgery.
I also realize that there is depression and anxiety mixed in all this with this chronic disease.Anyway may stay local and try Stanford again.
Sally

I'm 7-years on remicade and no issues! Some have been on remicade 12 or more years now. It doesn't expire lol. Get him on remicade.

Don’t worry about antibodies. They have tests for that and antibodies won’t cause any damages but he would have to discontinue if he developed enough of them. It’s not much of an issue to worry about even after they develop, you just discontinue and move on to a different treatment.

Remicade is very safe and has been studied for decades.

HI Casey,
Please add your email address to your profile so that I may send you a private email.

Thank you!!
Sally

I don’t know too much about UCLA’s program... but if you’re in northern CA you might consider UCSF. I was treated through the IBD clinic there and thought I received good care. I was refractory too and ended up having jpouch surgery. It was a huge decision but I’m a year out and I finally feel like I have my life back.

colitis research-we actually have had consultations at UCSF a few years ago and found their approach to be quite aggressive. You seem quite satisfied with their treatment maybe we will try them again.

Maggiesfour- I did email you privately-thank you!

Sally

SallyR, I hope your son agrees to get help. You didn't mention when his last scope was done, if it's been awhile he most likely will need one.

He is far too young to be missing out on life. I would be concerned more damage left untreated without medication. I think with any chronic illness most of us try to do some things on our own if for no other reason to feel like we have some control. I think that's human nature in us.

I know IPoop has 7 years of Remicade under his belt. There is a member in the crohns forum that marked a 20 year anniversary with Remicade. This is the longest of any member at HW. My gi says every patient has to be treated individually, no two are alike.

Hi Straydog,
Your comments are right on in that he has not had a colonoscopy in many years. He had major jaw surgery a few years back and had years of complications and re-surgeries, not to mention antibiotics that through him into flares. The jaw situation is more or less stabilized and now we are at present day dealing with his colon. He is somewhat resistant to seeing any doctor given his experience -one reason why I want to ultra careful who we choose. We do need to know the condition of his colon.I am concerned.
I am reluctant with Remicade since cancer is quite prominent in my family- sister, mother, twin sister and many aunts and uncles. They have all succumbed to this terrible disease-another factor in the mix.

Sally

SallyR said...
HI Casey,
Please add your email address to your profile so that I may send you a private email.

Thank you!!
Sally

Done.

iPoop- it may well be unnecessary worry on my part, we had such traumatic experiences from the beginning that I am extra cautious. I need my son to get on with his life and I will seriously look at the biologics, he cannot go on living a closed off life like this.

Straydog- you are right about the colonoscopy- he needs to get under the care of a good GI doctor who is a good listener and holistic.Sooner than later...

Casey-thank you for adding your email-I just sent you an email

Sally

If you're worried about cancer, it's more dangerous for him to have constant inflammation in his colon than for him to go on Remicade. I'd be more worried about being in constant flares. I was super resistant to ever going on biologics, but I started Remicade at the end of July and so far I've only had 3 doses (getting my 3rd infusion right now), but I've been able to get off prednisone for 11 days now. It hasn't been that long, but I wasn't able to get off prednisone before or even get down to 5 mg before without having symptoms, so I *think* it may be working.