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which rectal meds??? (quincy and any other rectal med proponents:)

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Ulcerative Colitis
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Posted 10/29/2013 11:58 AM (GMT 0)
cant get rid of the urgency!

ok quick backstory: im in the same flare since 2008. its mild now but wont go away. current meds: lialda, Imuran, uceris and rowasa a couple times a week.

my bleeding stopped with the addition of the uceris, but not the urgency.  rowasa does nothing for the urgency.  also, ive done rowasa daily for a few years and daily makes no more difference than 2 times a week. 

anyway, found some proctofoam in my medicine cabinet and used it a couple times. I felt it did make a difference with the urgency but now I am almost out of it....  however, my pattern has been that something will work for a few weeks and then stop working.  but im thinking with all the other meds maybe that was a good combination to add the proctofoam over the rowasa?

anyway, my inflammation remains in the bottom 20 cm of my colon.  I thought rowasa went the highest but the foam had some nice results, ugh, I don't want to get my hopes up.  but I get no more improvement with roawas, all it does it keep me from getting worse. 

what rectals should I use at this point. if its proctofaom, I just have to get a new script and refill from my doc which should be no problem...... sorry for the rambling...... just confused this morning!

Posted 10/29/2013 12:05 PM (GMT 0)
have you tried canasa suppositories?
Posted 10/29/2013 12:09 PM (GMT 0)
Proctofoam is a steroid type enema so you shouldn't be using that for long term maintenance, just short term.
I use generic mesalamine enemas and think they are much more effective than suppositories. If you are allergic to those you could ask for SF Rowasa (sulfur-free, or sulfite-free or whatever it is) which removes the part that people are allergic to.
Posted 10/29/2013 12:22 PM (GMT 0)
I am similiar to you as in the Rowasa basically holds me but i still experience exacerbations while using them daily, which i have been for years. Sometimes, Cortifoam will help me get over the hump...although, this time not so much. I am adding in some Cortenema. I am actually thinking of mixing the 2 together to see what happens.

So I think you just have to experiment ...maybe try keeping w/ the Proctofoam and if that stops working, you can try Canasa, than steroid supp etc.... I hate this dd and that nothing works consistantly.

So I don't have a definite answer but I can feel your pain. I so wish the Rowasa alone did the trick.
B

PS It is true that Proctofoam has steroid so you would ideally like to not use it for maintenance, but if it helps...it is a very low dose and may be okay.  Do your best to taper to the minimum amt. 

Posted 10/29/2013 12:28 PM (GMT 0)
I've had luck with the mesalamine enemas so far...but I think my first thought would be a steroid enema if I got into a flare I couldn't get out of..to get me over the hump and then hopefully back to mesalamine for maintenance.

I've also hear of people using a suppository in the morning and enema at night.

Just thoughts...like hateuc said...sometimes experimenting is the way to go

Posted 10/29/2013 12:28 PM (GMT 0)
I_love_coffee, any reason you haven't tried biologics yet (remicade, humira, etc.)? If you've been fighting this flareup for that long then I'd certainly bring out the big guns and give them a shot. Those work sometimes when other medications just aren't enough.

As far as the rectals go, sounds like you've tried them all. Although you haven't tried them in combination, e.g., steroid in the morning and Rowasa at night? That's about all I can suggest there to try. As you've tried Rowasa nightly for a while (4g of meslamine) per dose. You could try canasa, but it isn't as potent because it has only 1g of meslamine in each dose. You've tried steroid enemas (proctofoam) as well.
Posted 10/29/2013 2:14 PM (GMT 0)
I think proctofoam is good if it helps you in the short term, but it isn't something you can use longer than a few weeks anyway.

I know you've tried a bunch of different diets, but I wonder if taking the spinach out would do anything? Raw spinach might just be too much for you.
Posted 10/29/2013 3:06 PM (GMT 0)
blksteeda: yes ive tried the canasa, they have helped me before but not this time around.... plus I don't think the go as far up as my inflammation....which reaches to the sigmoid

I have done ALL sorts of combos over the years..... it only works for a few weeks a a time

ipoop: biologics are my next step either humira or remicade. 

kazbern: ive tried no spinach and no difference.  god, I feel like I have tried everything, I know its a mild flare but I am till barely making it into the bathroom some mornings.  the best ive gotten to is 2-3 bms a day no blood minor urgency for a few days. 

Posted 10/29/2013 3:58 PM (GMT 0)
Two more questions - have you tried adding fiber like psyllium to bulk the stool? have you gone gluten free for a 3 week trial?
Posted 10/29/2013 8:02 PM (GMT 0)
When you say it works for a few weeks at a time, is it because you start tapering?

Do you have any antispasmodics?

What probiotic are you using?

q
Posted 10/30/2013 11:56 AM (GMT 0)
kazbern: yes I did psyllium for well over a year, no help with the blood or urgency.   I also went gluten free for 3 months, no change whatsoever! i did scd for 2 weeks (as long as i could hack it!) no change...my bm is always firm and regular looking, its  just URGENT amd without uceris, blood....

quincy: no, no tapering. I faithfully did the rowasa nightly for probabaly close to 2 years hoping for a change.... i do know that it holds me where i am at, if i go for more than a week no rowasa, i get worse.. also yes, i have tried sooo many probiotics: i used vsl ds powder for about 9 months, i have used bc30, rueteri, etc, i tried the ones you use in your sig line a couple years back, i even was fermenting and eating my own kefir (billions of probiotics) for like 4 months with no change.

just did the proctofoam again last night and no urgency this morning

Posted 10/30/2013 3:04 PM (GMT 0)
Honestly I would use the proctofoam. Try to get to the minimum amt to do well . I hope this will do the trick for you. So hate this disease.
Posted 10/30/2013 7:11 PM (GMT 0)
ilc....what exactly are the symptoms you're having aside from the urgency, such as in how many times a day you go?

Proctofoam is a low dosage with pain reliever I think.

You've definitely got to try an antispasmodic.

Have you tried Canasa?

Are you taking the Lialda all at once or twice a day?

What about 6MP instead of Imuran?

q

Posted 10/31/2013 12:09 PM (GMT 0)
quincy:

symptoms: 3-4 bms a day, urgent. been on uceris a month. without uceris i have blood. no blood since uceris

i have used canasa off and on though out the years, do you think i should add it to the day routine>? i didnt think it would reach high enough.

lialda, all at once, at dinner time.

i do not believe i have ever uses an antispasmodic, what are the names of them and how would they help?

as far as 6mp instad of imuran, i will talk to my gi dr, i have an sppt 11/22. last appt she mentioned trying humira or remicade.....

Hateuc: i will ask my doc about the proctofoam, staying on it.

:) thank you for your help :) big hugs!

Posted 10/31/2013 4:53 PM (GMT 0)
Hugs back!

Canasa will deal with the rectum only as does proctofoam I believe....You might ask the doc for cortifoam that will go higher.

Try the Lialda split twice a day...just an option.

I use dicyclomine 20mg...I did start with 10mg and doubled it if needed. In the US, it's called Bentyl, Canada it's called Bentylol.

Some do better on 6MP than on Imuran...sorry, don't know why, however.

Humira/Remi are definitely other options. What about methotrexate?

What about probiotics?

q
Posted 10/1/2014 6:20 PM (GMT 0)
ilovecoffee - i saw in another post that you tried the budenoside foam - did that help at all? My doc said it reaches further up to the sigmoid.
Posted 10/1/2014 6:52 PM (GMT 0)
i am not a doctor & definitely a new member, but first i would do these

- Get a Faecal calprotectin test to know whats the current inflammation status, also to identify whether the urgency is from inflammation, spasms ..etc ( but 2~3 times isn't bad, this sounds like ibs symptoms)
- 4gm mesalamine enema Daily at bed time, also i would consider adding a budenoside enema for like 2 weeks
- i love coffee too but i would avoid anything that excites motility i.e coffee, black tea, coke...etc
- stick to bulking foods instead of high fiber


sorry for asking this, but what do you do exactly after using enemas, how do you lay down? (i.e. leftside, stomach, backside....etc)
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