New treatment plan

I've had no luck with this disease going on almost two years now. I've had good weeks here and there, but nothing consistent. By good luck, I was put in contact with a semi-retired GI here in town. He only sees patients in the hospital. But he takes on "projects" from time to time almost as a consultant. This guy has been reading my notes and calling my wife nights and weekends to talk about different things. I finally met with him this week, and although he's not going to be my treating physician, I will be seeing his protégé.

I met with him this week and his recommendation is that I stop Remi, stop AZA, stop Lialda. He said it's not working and there's no telling what the drugs are doing to my body. He is very, very interested in the mind/gut correlation of this disease, and how whether we know it or not, the amount of stress this disease causes consciously and subconsciously can make it extremely difficult to find remission. His recommendation seems a little unusual, but I am anxious to get started on it. Here is what he is recommending:

Rowasa x2 morning/night
Uceris x 2 morning/night (never heard of 2 a day before)
Ativan x 2 morning/night
immodium x 2 morning/night
Flagyl x 2 morning/night (this will be temporary) based on positive response I've had to this in the past
probiotic

So, this is a stark change to the heavy meds I'm on now, but he is basically wanting to start over with me. If this doesn't work, he said my only options left are cyclosporin and Entyvio. Then surgery. He's been practicing medicine for over 40 years and has only had 2 patients that needed surgery. I know this treatment is a little unorthodox, but his track record speaks for itself. I won't see my actual treating physician until 3/20, and at that time i'll start with the new plan.
I just wanted to share here and see if anyone had any input on this?

Thanks!

Thanks. I forgot to add Flagyl also. I've had good luck on Flagyl in the past. I've taken it twice and it has calmed my symptoms down considerably (3 bms a day as opposed to 10).

I'm pretty sure the Uceris is 9mg each, right? Anyway, it is a lot, but he feels okay with it.

Ativan is a mild anti-anxiety med. It's usually prescribed "as needed", but he feels like staying on it will help with my brain sending out stress signals where there are stress receptors in the gut. I've never heard a doctor stress how important they think the mental aspect of this disease is. He did a much better job of explaining than I can. I'm a pretty laidback person, but he talked of how this disease wrecks our sub-conscious. He was very open and encourages meditation, taking time for ourselves at least 30 minutes each day, etc...

Post Edited (jacket fan) : 3/6/2015 8:37:34 AM (GMT-7)

hey jf -

ya, if what you're doing aint working, time to try something different -

the brain/emotion/gut thing certainly is for real - I think the Ativan sounds reasonable - it's a pretty benign drug, w/o a lot of side effects -

what's his position on diet since you didn't mention anything ?

what is his time frame for getting you off your current regiment and on the new regime ;-) ?

Thanks. I've tried Lialda, Humira, Simponi, Remi, Imuran, Uceris, Pred, etc...
Other than UC, I've always been healthy, very active, always have kept a fairly decent diet. I'm a happy person, great wife, two great kids 7 and 4. I have a very happy and satisfying life, other than UC, of course.

Like I said, I'm really excited to start with this. He did such a good job of explaining everything in great detail. We talked for almost 2 hours. The craziest part is this guy isn't going to be my official doctor, he doesn't bill me; he's just doing it because he really wants to help. He called my wife last Saturday night just to tell her he wanted to meet us in person this week because he's going to be out of town when I have my official appointment with his old PA on 3/20. It's kind of mind blowing that someone genuinely cares that much.

DMC2011 said...
My shrink gave me a book called Deadly Emotions and i am sure your dr knows it! Where are you i wanna be his other project.

Is flagyl an antibiotic?

ha! I'm in Pensacola, FL. It's crazy how much effort and time this guy has put into me already. My wife and I have both been completely blown away by him.

Yes, Flagyl is an antibiotic. For some reason that and Cipro helps a small percentage of people with UC. I wish I could remember exactly why he said he thinks it does. It was not solely based on the bacterial aspect of it though.

I think it's good. If what you're doing isn't working, you might as well try something else. Sometimes you need to start fresh. I was in the hospital and I stopped everything due to being in an unconscious state and things have greatly improved (maybe from the drugs, maybe from the bowel rest - no one knows). I have now started over with a plan and I have been doing much better. I don't think anyone really knows what is going to work. I haven't heard of taking uceris 2x daily but it's interesting to know it's an option. I really hope you're able to get this under control. Are your symptoms severe or mild? Did you consider entyvio? It has a chance of working for people who are non-responders to anti-TNF meds. If you didn't respond to simponi or remicade, you probably won't respond to any of those types of meds. It happened to me too and it's really discouraging. Im sorry. A new direction is always good, especially when the old direction wasn't doing diddlysquat, haha. I haven't thought of that phrase in years. I don't know where it came from!

Way too much Immodium.

http://www.drugs.com/sfx/loperamide-side-effects.html

Toxic megacolon has been reported in association with the use of loperamide to treat symptoms of ulcerative colitis and pseudomembranous colitis due to antibiotic therapy. In one patient treated for ulcerative colitis, abdominal symptoms seemed to improve in the days before requiring emergency laparotomy.

Someone with moderate to severe uncontrolled UC shouldn't take any Immodium, much less four tablets a day. Ok, if there's a reason you can't be near a bathroom, one or two tablets in a day, once in a while, is probably ok but what your doctor recommends is dangerous.

Yes, definitely stop taking that much Imodium. Very dangerous!

I know some people were looking for an update on this, so here it goes.

After meeting with the "consultant" doc, I met with who is going to be my actual new doctor. After viewing my history, he believed that my colon was healed and that I'm now dealing with IBS. I also had a lot of blood work that came back that looked normal as well. Even my CRP was normal. He wanted to do another colonoscopy to confirm. I did that yesterday and there has been no change since my last scope. So, it is now obvious that the Remicade did not work for me. Instead of the treatment plan I wrote about earlier, this new doc wants to go straight to Entyvio. He did write a script for Ativan for 2 months to see how that does. As of now, he still has me on AZA also, although I'm not sure I will stay on that. I'll find out at my next appointment.

Does anyone know if AZA helps prevent antibodies to Entyvio the way it does with Remi?

Remicade didn't work for me and I am doing well on Entyvio. It's a totally different medication and it's gut specific, i don't think it's necessary to take an immune suppressant to stop antibodies, but I think a lot of people do, to try to make it more effective. entyvio is relatively new, I am sure there is not that much out there on the topic. :(

I don't think going from Remicade to entyvio is a jump really. What are the other options? I personally am happy I gave simponi a try. After having no luck with 2 anti-tnf meds, it was pretty clear that my problem isn't tnf.

notsosicklygirl said...
Remicade didn't work for me and I am doing well on Entyvio. It's a totally different medication and it's gut specific, i don't think it's necessary to take an immune suppressant to stop antibodies, but I think a lot of people do, to try to make it more effective. entyvio is relatively new, I am sure there is not that much out there on the topic. :(

I don't think going from Remicade to entyvio is a jump really. What are the other options? I personally am happy I gave simponi a try. After having no luck with 2 anti-tnf meds, it was pretty clear that my problem isn't tnf.

How long did it take you to feel a difference with Entyvio? I'm glad you're doing well on it. I've suspected that the anti-tnf was not the route for me as I've tried Humira, Simponi, and now Remicade. I'm looking forward to getting started on it, but kind of nervous at the same time, as it's really my last line of defense before surgery.