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Ulcerative Colitis
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Posted 3/11/2008 12:41 PM (GMT 0)
Hi, I go to GI tomorrow. I need to know what to "tell" him I want in the line of meds. I am going to take a proactive stand. Not just let him tell me what to do. I have been on a 3 week taper of pred. tomorrow is my last dose. I do not want to go on pred again. My symptoms have improved a little, but the blood and mucus is there still just not as much. My poo is finally coming (was very constipated) but is ribbon lookin...like a skinny snake, and I still have urgency.

My thoughts are:

stay with my asacal 3 2x day

Ask for rowasa enemas but I am not sure of this?

use canasa in morning and rowasa at night?

then when symptoms are gone...taper? How?

Any thoughts!!

thanks

Jan

Posted 3/11/2008 1:12 PM (GMT 0)
I totally agree that we all need to take a proactive approach to our treatments. I would take a list too so you don't forget anything!

It sounds like you still have some inflammation if your stools are super skinny. 6 Asacol/day is typically a maintainence dose. Have you considered asking to go to 9/day? Ill let someone else chime in about the enemas. What dose of pred are you on now? Make sure you taper slowly.
Posted 3/11/2008 1:20 PM (GMT 0)
I am on 10mg of pred now. tomorrow is last dose. started at 40mg with taper 10mg every 5 days. I was on 4 asacol a day...he upped it to 6.
I know I still am in a flare. I just really don't want to do more pred. I think I need rectum meds. I did start the canasa suppositories on Friday. 1 at bedtime. Since Friday I have been pooing. Before that not much of anything. That was the worst. No bm for well forever!!! I intend to ask GI how long a person can go without going poo. I was going on 4 weeks! In that 4 week time I probably got out about 2-3 days worth of poo. And not all in the same day...that was over the 4 week time.
Posted 3/11/2008 2:02 PM (GMT 0)
I had horrible constipation w/ my last flare. I went 8 days and ended up taking a laxative (per my GI). It was awful! You poor thing!

If you don't want to take pred. you don't have to. Make that clear to your GI.
Posted 3/11/2008 2:59 PM (GMT 0)
hi...the fact that you're having more formed stool is good...you're meaning from diarrhea?

Have you been eating? Some only exist on a liquid diet..doesn't produce much stool.

You don't have to take pred if you don't want to....you have other options, and of course, I always strongly suggest sticking with the 5ASA meds (both oral and rectal) if you have no sensitivity/allergy or serious side effects from them.
They do take longer but can be increased/tapered/increased as needed.

The tapering process....don't worry about it yet.
The enemas would be used nightly until you're normal...stay on them for another week then go to every second night. From there it's the same process...takes months sometimes, patience is definitely needed when on 5ASA meds.

The goal isn't to go off them...the goal is to find a maintenance dosage to help keep the colon in a more quiet state perpetually.

When you have the rectal meds (make sure you are able to get refills with the prescription), increasing at the first signs of a flare will have your flares less serious. Still a pain, but at least you'll have some control.

You can take the Asacol twice daily and not thrice....I find it better as to not miss dosages in the middle of the day.

quincy
Posted 3/11/2008 3:10 PM (GMT 0)

Jan,

In a reply to one of your earlier posts I had mentioned that I didn't think you were tapering prednisone correctly, so maybe you should clarify with the specialist how he expects you to use prednisone and taper off it.

Rectal meds could help, but since you have just completed a short treatment on oral prednisone (a much stronger treatment) with only a slight effect, I am not sure that I would expect rectal meds to have much of an immediate effect - but, I suppose it's still worth a try, as you never know how your body will react till you try it.  I agree with Tab that maybe your Asacol dosage needs to be increased.

I don't think you should completely avoid prednisone - if it's applied correctly, it could get you into remission and then hopefully the maintenance drugs can keep things under control.  I avoided prednisone for a while last year and tried to use only Asacol and rectal meds but things got much worse by doing so. 

Being proactive is not really about 'telling' your doctor what medications you want, but more about discussion and questioning your doctor about all the treatment options he sees available to you - with the aim of getting into remission soon.  Discuss the pros and cons of each so that you agree on, and completely understand, the next course of action.

Posted 3/11/2008 4:28 PM (GMT 0)

Qunicy: I am eating normal, lots :-) ! The more "formed" stool is from no stool at all. I don't get D.  When I flare it is blood and mucus and 20+ times a day...No poo. At least this time that is the way it went. I really think I was so inflamed and swollen that nothing would come out. I really don't want to be on pred. for a long time. And since my bathroom visits are under control 4-5 a day...I am thinking on the rectal meds. I know it may take awhile but as long as I am not going 20+ times a day it might be worth it.

Rio: I am following the GI orders. 40 mg for 5 days, 30 mg for 5 days, 20 mg for 5 days and 10 mg for 5 days.

When I say "telling" and pro-active...I do mean discussion with more of my input, and not just following along. I really think I should have been on rectal meds along with the pred. Even if it was just canasa. My opinion and I intend to ask GI about it. Also if he thinks I need more pred. well then thats what I will do. But I want to know my options. That way I can discuss it with him with a little knowledge.

thanks

Posted 3/11/2008 4:58 PM (GMT 0)

By not tapering correctly I didn't mean that you weren't following your doctors orders but that the process of doing so didn't seem right - and I'd blame that on our doctors as they need to do a better job of explaining how to use and taper prednisone. 

A lot of us are simply told to start on 40mg and then taper by 10mg every week but it shouldn't be as basic as that.  When and how you taper should also depend on how your body is responding to the medecine, otherwise you're just putting an extremely strong drug in your body and not getting the complete benefit of doing so.  Sometimes you may need to stay at a certain dosage for an extra week to make sure your symptoms are under control, or you may even need to taper at a slower rate, such as 5 mg or 2.5 mg a week depending on how things are going.

I also agree that rectal meds along with prednisone can be a good course of action - something I wish my own doctor had recommended when I first started on prednisone.

Good luck with the appointment.

Posted 3/11/2008 5:11 PM (GMT 0)
Oh! I totally agree with you!!!! I think that the drs should explain more. I agree with you on the tapering part. I dont think I would even have tapered down to 30mg in one week as I was seeing no results with the 40mg in the one week I was on it. As it is now I am almost done...tomorrow and I should be seeing more results than I am. I am really going to question him about that. I don't want to do this again. I need to know what the results should be...before I leave his office. I know its also my fault for not asking more questions. thats why I want to go in with some knowledge this time. Last time I didn't question anything. This time will be different. Thanks Rio for clarifying that. I now know how to ask my dr about the taper and my body.
thanks
Posted 3/11/2008 9:31 PM (GMT 0)
Prednisone is a the last thing my doc prescribes. When I was on Asacal, I was on 12/day. I also took a steroid enema in the AM, and then the rowasa in the PM. You could try to switch to Colazal, my doc says that more of the active ingredient is released in the colon. He also switched me to 2 rowasa enemas at night. I hate taking them, but they seem to help. When I feel well enough, I will go down to 1 enema, then none, and finally drop the colazal to 6.....if I ever get there. But I always leave with a plan, and I always feel better after I get the plan!! Good luck.
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