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Scared to taper cortenema

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Ulcerative Colitis
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Posted 8/18/2012 10:52 AM (GMT 0)
I started the enemas on 8-8... Rectal surgeon said 10 days... I asked him for 14 because he was going to be away ....so last night was day 10...
In addition to the enemas I am using canasa in the am and mid afternoon...

So I want to start to taper tonight...he never said anything about tapering but from what I have read here it seems like the right thing to do...


My plan is cont with canasa twice a day and alternate rowasa / cortenema until cortenema is done which is four more .

I am so nervous about doing it....so scared its going to mess things up....


Any thoughts on this or things that you suggest I do differently ?
He's away until the 27th.


ThaNk you all in advance....
Posted 8/18/2012 2:25 PM (GMT 0)
My surgeon specifically told me that you only need to taper if you have been on them for longer than 28 days- My package insert said the same.

Carlie
Posted 8/18/2012 4:30 PM (GMT 0)
Thanks! I think I'm going to taper every other night in hopes that it slows done any re occurring bleeding and urgency! I'm so worried that it's going to come back as soon as I stop ....
Posted 8/18/2012 6:44 PM (GMT 0)
What it seems you're worried about is that if you have more symptoms and just the Rowasa....you'll be without a medication...


Call the office on Monday. Ask if another doctor can give you another prescription of the steroid enemas till you see your doc. Do you have an appointment as of yet?

I understand your fear, but seek the options to get another prescription....
q

Posted 8/18/2012 11:04 PM (GMT 0)
I like what Q said about having another Rx on hand. This way if you see something you don't like, you can get right back on the enemas asap. I understand your hesitation...when you find something that works, you really want to keep w/ it. I waayy prefer the rectal meds than feeling crappy and sitting on the throne numerous times. Good luck and let us know how it goes. BTW, I am currently tapering Cortifoam after 10 days but stepping down w/ steroid supp..so I really know how you feel.
B
Posted 8/19/2012 12:22 AM (GMT 0)
Thankfully I can write my own prescriptions so that won't be an issue ... But hateuc. We are in the same boat...


Tonight is my first night back to rowasa ....good luck to you... Will let u know how it goes...


Just don't feel like going back to the urgency bleeding again...was just starting to feel better
Posted 8/19/2012 12:23 AM (GMT 0)
I was given a 21 day stint, and was told that I didn't need to taper
Posted 8/19/2012 12:28 AM (GMT 0)
Really? You can write your own Rx. That is awesome! I wish I could do that. Yeah, I am doing the Cortifoam in the am and Rowasa in the pm. It seems you have to do a lot of playing around w/ these meds.

Yes, def. let me know how you are doing and how the taper goes. As the p.p said we probably don't HAVE to taper, but I like to just because. Good luck and keep us posted.
B
Posted 8/19/2012 1:21 AM (GMT 0)
Trust me it has it's good and bad points... Good Incan get anything I want but bad bec i tend to treat myself and wait to see a doctor,

Thankfully my internist knows that I will treat myself ifi can't get in to see hi, so he always sees me quickly.

The bad thing is with my GI, he knows my profession so he knows I can self treat ...I think that's why he's so laid back and not aggressive with my treatment.

That's all changing Monday though...I am armed with a book of questions and concerns for him...

I need to find out if I have chrons or colitis and find out why I a, never on oral meds for the ulcer on my terminal ileum and why he never suggested maintenance!

I'm so angry with him



Anyway...yes let's update tomorrow. I know it's not required to taper but I just feel like maybe if we taper it will be less of a chance for the symptoms to return...probably wishful thinking but whatever!

Good luck and update tomorrow
Posted 8/19/2012 8:24 AM (GMT 0)
For some, taper isn't necessary....but because some continue with symptoms, it eases with tapering and is always suggested by many of us.

The point of YOUR tapering is to ease back onto the Rowasa....or to support the Rowasa ifthat sounds better.

Crohn's in the colon is still a "colitis"...so best to clarify with Crohn's or UC. It's one or the other.

REgardless, the non-treatment of the ileum would be a concern to me. But..there are meds for that!

q
Posted 8/19/2012 11:06 AM (GMT 0)
I know and the weird thing is the recta surgeon nevernsaidntongo back to rowasa when I am done w cortenema.

But in his defense this was only the second time I saw him...so I understand.

As for my GI..that's a whole other story...


So after all my ressearch I am convinced it's chrons colitis...

Tomorrow like I said, he is not going to be happy with all my questions and concerns...but I'm done with this..I need to take charge of this and he has to stop being so non-committal about it all. Everything is " well it could be" or " it's possible" and when I suggest a med he's like " sure give it a try"...


I need a more confident GI... I did make an appt with a doctor in NYC ...they have an IBD center...and I can't wait...

I couldn't get an appt until October but it's better than nothing and hopefully it's a start.
Posted 8/19/2012 6:55 PM (GMT 0)
The treatment meds are pretty much the same. I think you should request a prescription for the sulphite-free version of Rowasa.

There's positives about a doctor who's willing to try different meds...at least he's not initially got you on the big gun meds.
Depends on how you want to be treated/led.

You're gaining information and education as well as others' experiences, suggestions... and now your experiences and experimentation.

It takes time.

It's possible that once you're on an oral med, you will improve.
Now, not all are able to deal with the 5ASA meds...that's why the suggestion of the steroid enemas/suppositories as a possibility. It could be in part that the sulphite is a problem...but you'll have to see how that fares for you.

You're still improving...that's a huge plus!!

q
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