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Rectal meds, is this typical?

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Ulcerative Colitis
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Posted 5/2/2014 3:45 PM (GMT 0)
I was off my Lialda for about a year until a flare in 10-2013.  New GI gets me back on Lialda and everything is good until a stressful event puts me in a really bad flare. 

GI provided me with Perrigo enemas and I could not hold it for more than 1-3 hours.  GI sets me up with Canasa.  I did those instead of the enemas for about 2 weeks and doing O.K., little blood on paper, then my symptoms started getting worse.

So I quit the Canasa and was able to hold 1/2 bottle of the enema and doing well for about 4 days. Things started getting worse so I tried a full dose and for 2 whole days, no blood and perfect poo.  Now the blood is back.  On the paper only as far as I can tell.  This whole time-no mucus problem. No cramping.

Is this typical to be going back and forth with the symptoms?  Does anyone use both rectal meds on the same day?  I'm scared that would be too toxic.

I wonder if the meds are not working, am I too impatient or maybe something else is going on.  Recent stool sample was normal.

I'm seeing my GI next week and she has already mentioned Prednisone-I REALLY do not want that.

Posted 5/2/2014 4:13 PM (GMT 0)
Too toxic is not really an issue if both are 5-asa. It acts mostly topical. The Perrigo is generic Rowasa, and it has a sulfate buffer that might irritate membranes, so that could be a caution against enemas 2x daily. No sulfate in suppositories though.

It does sound like the flare is jumping ahead of meds. You want to stop things form getting worse. short taper of pred could help. Maybe some nutrition (added or removed) could also help.
Posted 5/2/2014 4:17 PM (GMT 0)
I'm sorry to hear you having troubles after a long remission. I might be wrong but from the way I read your post it sounds like you try one round of rectal meds and stop? Also it sounds like you aren't taking your Lialda on a regular basis. If this is true and you are in a moderate flare, you really need to be consistant on taking your meds. You should be taking Lialda and doing a round of rectal meds every night until symptoms are gone, and still continue to allow healing to take place. As far as taking two rectal meds in the same day, that can be done, but I never have taken Canasa myself so I will allow others with more experience speak to that protocol.
Posted 5/2/2014 4:49 PM (GMT 0)
You should have never gone off Lialda. UC is a chronic lifelong disease and will ALWAYS be with you. That's why you need constant treatment, even when in remission, to keep you in remission. You may need prednisone to get you into remission. If that happens don't ever go med free ever again after tapering off the pred.
Posted 5/2/2014 4:51 PM (GMT 0)
What I would do is do an enema in the evening and then a suppository in the am after your morning bathroom trip. It is normal to go back and forth with some symptoms. You are improving so just keep at it!!
Posted 5/2/2014 7:47 PM (GMT 0)
You don't need systemic steroids at this point...anywhere near, actually.

Stay on the enemas and use a suppository in the mornings after your major number of bms.

As Sheri said...you are improving.

My opinion, and it's a very strong one.....you are micromanaging your symptoms. You're flaring, plain and simple. You're not getting worse.

Hang tough...stay on the enemas and use the supps during the day until you're able to retain the enemas for the night. Then, taper off the morning supps and continue with the nightly enemas for at least a month.

See where you are at that point.

Never go off the Lialda.....but depending on the extent of your UC, symptoms and the dosage you're on during flares...you should be able to eventually taper to a maintenance dosage.

You could also try doing the Lialda twice a day by splitting the dosage.

As well...taper the enemas to a maintenance dosage of twice a week.

Regarding the metabisulphite in the enemas...while that might be an issue with those who are sensitive to it, don't jump to the conclusion that you are. I do believe that the supps have it as a preservative as well...but can't find the info.

q
Posted 5/2/2014 8:56 PM (GMT 0)
Thank you all for the input!

I have not stopped the Lialda, 3 pills daily since 11-2013.

I hoped to stay med free with the sunflower/spinach diet (since around 11-12) because of my ever changing insurance.  Finding an affordable premium that also allowed pre-existing conditions (I have 2) at that time was not possible.  I now have insurance through my husbands retirement benifits.

I also had a GI doc who I could never reach by phone and I don't think he had a nurse on staff.  He would only speak to me in his office.  I couldn't make an appointment so he wouldn't renew my Lialda.

I like my new GI and staff.  I just told them my symptoms and they sent me a scrip for the rectal meds without me having to go in for another exam.  Not sure my next appointment will end that way.  I did read where some became drug resistant.

After reading through (hundreds?) of posts, I hope to stay ahead of the problem without having to resort to the BIG guns.  Currently I have 2-3 bms daily.

One thing is for certain, I could not hold the Perrigo without the help of the 2 weeks of Canasa.  This I gleaned from this support group.

Thanks for talking me off the ledge!

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