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Ulcerative Colitis
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Posted 9/8/2011 10:40 PM (GMT 0)
I had a follow up with the GI today after seeing him last week. I haven't seen much change in my flare and told him it was a rough week. He told me that it's not just going to go away after a week, which I knew, but I though I would see some improvement after being on prednisone for 10 days.

So, he upped ithe pred to 40mg. Last week we dropped to 30mg and I told him I didn't feel any better. I asked about rectal meds and he didn't seem interested.

Then he did something that still has my head spinning a bit and went right into Remicade. On one hand, he's saying that I'm not going to get better in a week on my meds and the next he's talking about starting Remicade. I told him that I want to wait a week, see how the 40mg of pred does and another week on Apriso.

I also asked about probiotics and he recommended Ultra Flora Plus. Does anyone have any experience with this?

I like my GI but today kinda has me shaking my head. I'll see how next weeks visit goes.

Posted 9/8/2011 10:53 PM (GMT 0)
This kills me.  Why would he not be interested in giving rectal meds a try?  It gets directly to the rectum and sigmoid colon and even if more colon is involved helps to heal the bottom which can be the hardest to heal. If the bottom is healed it will help w/ urgency, accidents etc... It also has a low absorption rate  and is pretty safe.  However he seems very interested in going to the biggest gun?  I guess some Dr's have the top down approach where they start w/ the biggest gun. 

I personally would negotiate w/ him and tell him you are interested in trying the rectal meds before taking such a drastic step.  If you see no improvement after a few weeks/month w/ the rectals , that you will entertain other options.  Seriously though, many many people have had great success w/ rectal meds even w/ pancolitis.  I would def. give it a try. 

As far as probiotics,  I take VSL 3, but I do know alot who take Ultimate Floral CC.  I think it may take a little experimenting on what probiotic works for you.  Just like everything else w/ this crazy disease, everyone is different and diff. combos work for diff people.  Seriously though, I think many of these Dr's are rectal medaphobes, which is very strange.  Good luck and let us know what you decide to do.

B

Posted 9/8/2011 11:04 PM (GMT 0)
I'd be finding a new doctor RIGHT AWAY. For cripe's sake, you have left sided UC....you are the "prime candidate" so to speak, for use of rectal meds. Idiot.
Posted 9/8/2011 11:40 PM (GMT 0)
I have heard of people doing better on a high dose of prednisone to start. I hate to say that because I know how much prednisone sucks but if it takes a few days at a higher dose to push you into remission, that's better than starting biologics unnecessarily. I agree with the others, you should see another GI. Before starting Remicade, you should try rectal meds, you also need testing and a sigmoioscopy would be smart to get a visual of the rectum. If there is inflammation in the rectum, you need to be on rectals before considering Remicade in my opinion.
Posted 9/9/2011 12:06 AM (GMT 0)
Just to be clear.....did YOU ask about the retention enemas or not?

q
Posted 9/9/2011 1:05 AM (GMT 0)

fruitgirl said...
I'd be finding a new doctor RIGHT AWAY. For cripe's sake, you have left sided UC....you are the "prime candidate" so to speak, for use of rectal meds. Idiot.

 

Ditto.

Posted 9/9/2011 1:37 AM (GMT 0)
I would def try the rectals...I mean, I know it's not fun but hey, if that's where the problem is, then that's where you gotta treat.  YOU are the patient, if YOU want to try rectal meds then tell him that.  I called my GI up and said I wanted them.  I had a script the next day.
Posted 9/9/2011 2:20 PM (GMT 0)
I told him that I started using Canasa but it seemed that they weren't absorbing. I used it overnight and most of it was still formed in the toilet the next morning. He just shook his head. We normally have very open two-way conversations.

He did blood work yesterday and I have another appointment on Tuesday with a colonoscopy on Thursday.
Posted 9/9/2011 2:41 PM (GMT 0)
I think you need the enemas. Personally, I'd call and request a script.
Posted 9/9/2011 8:29 PM (GMT 0)
I have the same issue with my doc. He says I probably shouldn't use rectal meds when I make my medicine switch soon, because he thinks I had a reaction to 5ASA's and I would see "more harm than good if I use them." Makes no sense to me.

I'd just call and get a script, no harm in trying.
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