HealingWell
Search Close Search
☰

Active UC for 1.5 years :(

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/18/2009 2:10 PM (GMT 0)
 

Hello

I have had active UC for 1.5 years, without much remission.  I just had a colonoscopy and my results show my colon is absolutely FINE, but My only problem is LOWER rectum bleeding, now doctor says that most oral meds are not getting to the site and the irritation is not improving with my current regimen of lialda 1.2gm (4 daily) and 6-MP 50mg daily.  So now the doctor wants to use Remicade (infliximab) IV.  I dont know about this.

If anyone has UC with no colon probs and only rectum problems and have had luck with any meds or therapy PLEASE PLEASE let me know

Thanks

ucbug :(

Posted 11/18/2009 2:20 PM (GMT 0)
Did your doctor ever recommend rectal meds? If not, push for that instead of jumping to Remi. There is Rowasa which is a liquid form of a mesalamine or there are steroid enemas aka Cortenemas.
Posted 11/18/2009 3:57 PM (GMT 0)
I'd def go for the 5-ASA enemas in your case.
Posted 11/18/2009 4:13 PM (GMT 0)
I had the same problem. I was flaring for well over a year from Proctitis. I now have a bit more inflammation throughout but I was able to control my rectum issues with Canasa. You may need something that goes a bit further up if you're problem is more severe, I have seen a lot of people have great luck with enemas.
Posted 11/18/2009 4:25 PM (GMT 0)
I'd probably use both enemas and suppositories. You could use the enema at night and the supp in the morning. I'd still keep taking the oral meds just to keep inflammation higher in your colon under control (assuming you've had inflammation there in the past). I wouldn't consider using remicade until you've given rectal meds a good shot. If the 5-ASA rectal meds don't work, maybe try the steroid-based ones.
Posted 11/18/2009 5:49 PM (GMT 0)
I agree with fruitgirl- My daughter-had good luck with the Cortafoam enema's for awhile. The 5ASA Colazal is supposed to dissolve lower in your colon than the others-might be worth switching. Remi has been great, but I might hold off on the big guns until you try a few more options.
Posted 11/18/2009 5:55 PM (GMT 0)
hmmm, no rectal meds ever?

I second the retention enemas at night and suppositories during the day...but each will have to be tapered to a maintenance level.

Welcome to the forum.

I'd long skip the remicade forever if you're able.

Of course, rectal meds take commitment. Could serve you well....but do know that in some cases, lower rectal inflammation can be very difficult to treat sometimes.

quincy
Posted 11/18/2009 7:33 PM (GMT 0)
Yes, I had that same problem with my first flare which lasted almost a year. The rectum refused to heal...I would first try rectal meds if you have not, however, they did not work for me - they do work for many people and they do work to help maintain remission for me though.

After avoiding it for almost a year, I had to be put on pred to finally get my rectal inflammation in control. It worked for me, fairly quickly and in retrospect I wish we had tried it sooner. I personally would not jump to Remicade without trying pred first.
Posted 11/18/2009 7:42 PM (GMT 0)
Think I may switch doctors at this point. The skipping of rectal meds altogether is pretty inexcusable. Unless you tried those?

I have the hyrdrocortisone enemas and rowasa in my cabinet. Prefer the cortenemas for quicker result.
Posted 11/19/2009 3:10 AM (GMT 0)
I really really appreciate this gesture from all you, I have tried steroids for 1.5 years but no luck. I think you guys are right, i will try the rectal supp of 5-asa along with mesalamine enema. I have been very non-compliant with the enemas since i seem to not be able to hold them. I hope i have better luck with suppositories.

I will keep you guys posted on

ucbug
Posted 11/19/2009 3:18 AM (GMT 0)
sorry I forgot to mention my full regimen I was put on rowasa but I hardly used it but this insight you have given me may help me.

thanks

ucbug
Posted 11/19/2009 3:28 AM (GMT 0)
Maybe by using the suppositories, you'll heal the rectum so you'll be able to hold the enema better. Also, have you tried just using half of the enema to see if you can hold that? My GI had me start out using half, and see if I could hold that, before "graduating" to a whole enema. Also, holding the bottle in your hands, or running it under hot water to warm it, can really help with retention.
Posted 11/19/2009 4:04 PM (GMT 0)
Just understand that mesalamine and hydrocortisone enemas are night and day in difference. Even in ease of retention. Consistency of one is water, the other a thin pudding. There should be several threads around on tricks to holding these thing. Use half and warm it up like fruitgirl mentioned... i do that alot.
Posted 11/20/2009 4:20 AM (GMT 0)
I will try that for sure, I can not thank you enough, I hope this solves my problem.  I am tired of my symptoms and cant wait to go into remission.  I will hold of on remicade and try this, Do you guys know how long should i wait before i see results?

ucbug

Posted 11/20/2009 6:00 AM (GMT 0)
you should see results within a few weeks if you stick with it. i found the suppositories easier to handle than the enemas, but when you warm up the enemas first they are a little easier to deal with.

Remi's a great med too, but i agree you could probably give the rectal mesalamine a try first. best of luck to you!
Posted 11/20/2009 6:51 AM (GMT 0)
I was in a nasty flare when I started the rowasa, and noticed a difference within a couple of days.
I'd give it up to a few weeks, though.
Posted 11/20/2009 12:05 PM (GMT 0)
I'm gonna have to agree with everyone and say def. try the rectal meds before you move on to the big guns. I did the same as you...started with Asacol only and though I didn't have a scope I could tell that it was helping my colon but that I still had inflammation in the rectum b/c of urgency issues. Started the Rowasa and really within 2-3 days I noticed a huge difference. Am now starting my first taper so yeah, I'm on the rectal med bandwagon as well.

Good luck, hope you can find some relief!
Posted 11/24/2009 6:46 AM (GMT 0)
Thanks a lot everyone

I just started using the 1/2 of rowasa (warmed up) in the AM and 1gm of Canasa at bedtime, The 1/2 of warm enema makes a big difference in retention, no issues with suppositories, I am going to hold off on Remicade, I will try this for a couple of weeks to see. My trips to bathroom were mainly happening after 2pm (usually 4 to 6 till bedtime), now it has cut down to 2 to 3, I am hoping it keeps going in the right direction

So here is my current regimen:

Lialda 1.2gm - 4 tabs per day
6-MP 50mg - 1 tab once a day
Rowasa - 1/2 in AM
Canasa - 1gm once at bedtime

I am thinking to try Cortenema before jumping to Remi, if the rectal meds dont work.

Again, I appreciated the 1/2 dose, warm recommendation, I can hold it for 1/2 to 1 hr.

Thanks

ucbug
Posted 11/24/2009 6:51 AM (GMT 0)
Sorry to bother you all

One more questions, I see many of you take probiotics, why do you recommend them if you do?

ucbug
Posted 11/24/2009 8:04 AM (GMT 0)
Hi..great things are starting to improve for you.

REgarding probiotics...there are tons of positives for everyone, not only UCers. But, with w wonky gut or digistive system can come an imbalance of intestinal flora and they help provide the best balance possible.

There's lots of info on the internet about probiotics...do the research to get a better understanding of the why people should use them.

Then the next step is to figure out which kind can work for you....trial and error because not all seem to agree with everyone.

You should use half the Rowasa in the pm with you laying down as to help with retention.
Use the suppository in the am....

Increase your amount of Rowasa over the next week or so....

q
✚ New Topic ✚ Reply