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newbie Q: is remicade really the end of the road?

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Ulcerative Colitis
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Posted 1/8/2008 5:05 AM (GMT 0)
hi all...i've just found this forum, and am so relieved at the prospect of getting some real information, other than all of the horrid books i've managed to find.

here's my question:  i've been working on controlling my UC since july 07, when i was first diagnosed.  2 colonoscopies, asacol, lialda, 6-MP, proctofoam, cortisone enemas, and prednisone prednisone prednisone.  nothing worked.  my GI finally put me on remicade infusions (i've just started tapering the remicade), which seem to help things, but i can't seem to get the bleeding to stop.  even my GI is frustrated - she thinks i may be steroid resistant, and is starting to talk like an ostomy is the next step if the remicade doesn't work, but the idea just terrifies me.

is she right?  is that really the only option if the remicade doesn't work, given the treatments i've already tried?  i'd really appreciate any and all advice/insight on this...thanks so much!

Posted 1/8/2008 6:00 AM (GMT 0)
Welcome to Healingwell, Hyacinthgirl. If you can give some additional information, you'll get better answers. Where in the colon is your UC located? What is your current medication regimen - anything along with the Remicade?

First, a number of us have been switched from Asacol to other 5-ASA drugs such as Colazal with good results. Some of our members actually have better symptom control with the old tried and true Sulfasalazine.

Have you used any 5-ASA enemas, such as Rowasa? If your sigmoid colon is involved, these can be helpful. Also a good probiotic, to replace the "good" bacteria in the colon that seem to disappear with UC.

Do I understand correctly that you are being tapered on the Remicade? Most often it's given every six or eight weeks long term after the three-dose induction schedule.

Some of our members are being started on Humira, a newer drug. It is not yet FDA approved for UC, so insurance coverage can be an issue for some people.

New medications are being worked on all the time, so more will be coming on line in the coming months and years, I'm sure.

And finally, I'm sure a lot of our folks who find they are helped by diet will be by to give you information.

I'm sorry you've been given this unpleasant condition to deal with, but glad to have you here. If you check the UC resources listed here, you'll find a lot of really good basic information about UC. The more you know, the more you're able to participate in your own care.
Posted 1/8/2008 4:37 PM (GMT 0)

judy, thank you so much for the response!  to answer your questions:  my GI calls it procto-sigmoiditis, so i'm guessing that means my sigmoid colon is involved.  and i think it's my left colon, though my brain is awfully fuzzy from the prednisone these days.

i forgot that i had also tried sulfasalazine - that's on the list too :) my first GI started me on proctofoam, then prednisone + sulfa.  when that didn't work, my current GI switched me from sulfa to lialda (still on prednisone).  then she cancelled the lialda & added 6MP (with the prednisone), then added cortisone enemas.  when none of that worked, she sent me for remicade (the standard 1, then 2 weeks, then 4 weeks, then 8 weeks - i just had my 3rd infusion last week, so i'll wait 8 weeks for the next one).  the 2nd remicade infusion seemed to be helping, so she started tapering my prednisone.  i started to have some flare symptoms again when i started tapering, but the 3rd infusion seems to have kicked things back a bit.  so basically, i'm having "normal" BMs now, but still with blood - i just can't seem to get rid of the blood.

supposed to talk to my GI today about lowering the prednisone again - and i'm so scared she's going to tell me no.  i have such a hard time on the 'roids...i've had to be on disability because i can't even think.  it's awful....i'm sure you all understand.

anyway, i've cut my daily advil regimin (for back pain ref'd from the colon), and my hubs has made me quit dairy...i'll try anything at this point, but i just really don't want a surgery if i can avoid.  is there anything i'm missing??

thank you all so, so much!

(side note:  wow, it's weird to "talk" about all of this stuff...guess i'll get used to it)

Posted 1/8/2008 5:21 PM (GMT 0)
I have had a very similar experience with meds as you, except I never tried 6mp, my GI wanted me on Remicade instead. I never saw results with anything, and I had to force my GI to get me off Prednisone. You aren't tapering the Remicade, you are now at the regular dosing of 8 weeks. I still had bleeding with Remicade but after having the sigmoidoscopy 3 months after I started it, I saw it was working even though I didn't feel like it was. The Remicade nurse told me some people don't see a big change with it till a year or so on it, so I stuck with it, and finally it did seem to work better, after a year. I wish I would have tried some rectal meds combined with the Remicade before. The Proctofoam seems to help the bleeding when combined with the Remicade. There are other drugs now, like Humira, Embrel, and Orencia, but they aren't apprived for UC yet but hopefully soon. I have heard some people who had trouble with Remicade that are doing well on Humira. That gives me some hope. Definitely stay away from the aspirin. And caffeine. And greasy food. Hang in there and good luck with the Prednisone issue with the doctor.
Posted 1/8/2008 5:54 PM (GMT 0)
Unfortunately (or maybe fortunately, who knows) Remicade/Humira is currently the last step. It's not like you'd HAVE to get an ostomy, but as far as pharmaceuticals go, those 2 are the strongest things on the market these days. I suppose one can always decide to just "live with it" & not get surgery, & stay on whatever meds they can deal with.

Posted 1/8/2008 9:44 PM (GMT 0)
hi hyancinth - a few thoughts:
regarding 6-MP: that usually takes 3 - 6 months to become effective. it sounds like you haven't had UC very long, so how long did you give 6-MP a try?

advil - get off it, now! advil is an NSAID and those are bad for UC-ers.

lastly, I suggest you create a signature (from the control panel) so people will always know your situation.

welcome. sorry you have to join us, but people here are really great.
Posted 1/8/2008 10:07 PM (GMT 0)
The only things I see that you don't list having tried are Rowasa and Colazal. Both of these have helped a lot of people here, so you might ask your GI about those.

And yes, do give it some time. Although it may seem the disease came on overnight, it really took a while to get to the point of your recognizing there was something wrong. It can take a while to achieve remission.

Try some relaxation techniques, too. We really don't have control over our disease, so relax and don't put too much responsibility on yourself. Sometimes a calm mind and decreased stress can serve us almost as well as the right medication.
Posted 1/8/2008 10:21 PM (GMT 0)
Hi and welcome to Healingwell :) I have to whole heartedly agree with everyone here. Especially to get off the Advil. Any Nsaid can cause intestinal bleeding so this might be your bleeding problem.
Posted 1/8/2008 11:51 PM (GMT 0)
thanks much, everyone. my GI was actually the one who said the advil was okay...but i'm beginning to think you all are right, so i'm glad i stopped it. maybe we can just give the remicade some more time & see what happens.

i'm going to go look through the resources thread as well, but if anyone has any other dietary, etc, non-prescription advice, i'd love it. my GI doesn't seem to be a big believer in lifestyle or diet having a lot to do with fixing things, but i'm ready to try just about anything at this point.

judy, i'm working on that relaxation thing...not my strong suit :)

oh, and UCinNC, i wasn't on the 6-MP that long, but my dr decided things were getting worse, not better, so she pulled me off of it.

i really appreciate all of the advice - please keep it coming. this is such a confusing world to come into....especially with the prednisone brain!
Posted 1/9/2008 10:30 PM (GMT 0)
My son is on Asacol 4, 3 x per day. He is getting better, but still goes to the bathroom 12 or so times per day. He let me peek today, and it looked semi solid, and no recognizable blood.  I called the GI and spoke to the nurse about the frequency, especially at night.  She said the NEXT STEP would be Remicade, according to what the GI had written in the file. Haven't we skipped a bunch of steps???  How should I approach the GI? We just began going to him after a friend highly recommended him. He doesn't believe in probiotics either. Should we run???
Posted 1/9/2008 10:48 PM (GMT 0)
Hi Hyacinth

Welcome! With the 6-MP it can take 3-6 months to work so you could be getting worse simply b/c your flare was getting worse and the medicine did not have a chance to work yet. I'd say that is still an option for you to try before surgery. I'm on azathioprine a generic of Imuran which is similar to 6-MP so those are other options but they take 3-6 months to work. Also someone today mentioned Prograf and Humira.

I third the stopping of Advil and all NSAID's.

Also, for me personally coffee (regular or decaf) gives me extra bm's when flaring so I have to pretty much stay away from it and I think it helps my colon heal faster by having less bm's (IMO) plus when flaring, fewer trips to the bathroom the better for me!

Yes, it is kind of funny/weird to finally be able to talk about all this = )

HTH!
Posted 1/9/2008 10:53 PM (GMT 0)
Cyclosporine can get the prednisone working faster, but you will have to find a long term medicine to keep you in remission such as Imuran.
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