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To those who have moderate to severe colitis

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Ulcerative Colitis
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Posted 10/26/2011 11:14 PM (GMT 0)
I have moderate to severe colitis. I am currently taking apriso and canasa. I've had colitis for 4 years and I have flared every year which I had to go on prednisone. My GI says that if I'm taking my meds, I should never be in a flare and since I've been flaring every year, it means that my meds are not strong enough. Also said that if I don't get back in remission with the meds I'm taking now(was previously on asacol only) I would have to stay on something else like 6mp or remicade which I really don't want.

Usually after getting off pred I can do anything for a whole year until colitis decides to come back and say hi. This year was different. I've been flaring almost all year. IDK what's going on. First flare this year started on Feb until June. I had to go on 40mg pred. It reduced symptoms greatly but not completely. It was enough for me to live normally but I knew that it was still there. That lasted for almost a month then went back in a flare. Since then I am still in a flare.

I want to know, for those of you who have moderate to severe colitis, do you flare every year?? And if your meds are not listed in your sig can you state which ones you're taking?
Posted 10/26/2011 11:42 PM (GMT 0)
I currently take Lialda. When I have flared in the past I was put on pred as you were. It worked for me the first time but not completely the second time. I seem to flare right around Christmas time. Lucky me. This last time the thing that finally got me out of my flare was the rowasa enemas. Luckily it was something simple like that and I now stay on a maintenance dose all the time along with a lower dose of lialda. Have you tried any enemas? Many people on here will recommend them also.
Posted 10/26/2011 11:43 PM (GMT 0)
Ernee drugs arent the only solution to colitis, infact diet and lifestyle changes should not be overlooked, have you made any dietary changes since these 4 years?
Posted 10/26/2011 11:53 PM (GMT 0)
So I take it you don't use rectal meds when you're in remission? Have you ever tried using mesalamine enemas (rowasa)? I was diagnosed with pancolits and was in a pretty bad flare, but have been in remission for close to 2.5 years now and just had a c-scope that was completely clear. I used Asacol + mesalamine enemas nightly + pred to gain remission. After I tapered off pred, and had been symptom-free for a while, I dropped down to using enemas every other night, then finally, to twice weekly. I chose to stay at twice weekly, because studies show that UCers who use mesalamine enemas twice a week, in addition to oral meds, stay in remission longer than those who only use oral meds. I also switched to Apriso from Asacol for the convenience of once-daily-dosing and because I was finding whole Asacol pills in my stool and thought Apriso might dissolve better for me.
Posted 10/27/2011 12:09 AM (GMT 0)
I guess I don't have severe or moderate Uc - more like stubborn Uc. Yes, I flare year after year sometimes FOR years hence the reason I am on 6mp, Colazal and Remicade.

However, I found that when I do steroid rectal meds that it helps get my flare under control better than anything else. What have you tried in the past? Have you always been on Apriso? Do you know the extent of your Uc?
Posted 10/27/2011 1:53 AM (GMT 0)
i had my first flare at 17 and was fine for 4 years. i wasn't on any medicine or anything- just diet change. then at 21, i flared again but the medicine i started on gave me a whole crapload of new symptoms and it's been all downhill from there.
Posted 10/27/2011 3:01 AM (GMT 0)
Since I was first diagnosed I have flared once or twice every year. The last flare I had was major because I was not on any meds at all and it hit me very hard. I have been on/off prednisone all year and on asacol/6mp all year. Started flaring again a couple weeks ago but it's been pretty mild for the most part. This is good because I have severe uc as my last colonoscopy showed. If you're blood is good for 6mp maybe you should go with that. I don't feel I have any side effects from it but I guess you never know what the future holds :/ Good luck going into remission.
Posted 10/27/2011 3:12 AM (GMT 0)
when i was first diagnosed in january and then again in august. then the next year i flared again in august. i noticed that i flare in the late summer months, but those 2 summer flares i dont even remmeber that well so im assuming they weren't that bad. but this summer i had a horrible flare that left my on the worst medications. im hoping that i dont ever flare again, but im guessing thats like a slim to none chance since it seems to always find its way back somehow which is really frustrating
Posted 11/6/2011 1:56 AM (GMT 0)
Thanx for the responses!

Yes I have tried enemas but only when I was first diagnosed(4 years ago). This time im using canasa.
Do enemas work better than suppositories?

Yes I actually have changed my diet quite a few times, only because I decided not to go on prednisone this year and try a diet change. After flaring for 5 months and it getting real bad, I ended up taking pred anyway. Not even Pred put me back into COMPLETE remission this time. It made me feel fine but I knew I wasnt 100%. Lifestyle changes? eh, it kinda changed on its own. This is the first year I ever experienced depression(idk if the pred caused it).

I think I have tried every supplement in the book except for slippery elm(not yet). I have always been on asacol and recently switched to apriso to find out if it works better for me so ive been on apriso for about 1 month. The extent of my UC is from the descending colon to the rectum.

Post Edited (Ernee) : 11/5/2011 8:01:04 PM (GMT-6)

Posted 11/6/2011 7:53 AM (GMT 0)
Get out of flare non-meds: fish/chicken/spinach/purewater+ultima/pysillum-seed-powder/VSL#3DS/Chobani Yogurt.
Get out of flare meds : Librax/mebeverine/sulfasalazine
Daily remission : I take curcumin/coconut water/vitamins
Posted 11/6/2011 12:04 PM (GMT 0)
Sounds like we're in sort of the same boat. I was on Apriso since being diagnosed in August of 2010 and have recently switched to Lialda. I switched b/c I have had roughly 3 flares in the year since diagnosis, this last one being the worse! I'm currently on Prednisone and it's basically put me back into so so remission but my GI now wants me to start 6MP since my colitis spread/got worse and I guess the mesalamine alone is not cutting it. I'm waiting to hear back about my labs before I go a head and start it. Apparently I need to take the Lialda as well as the 6MP, which I don't get, why take both, but that's another topic, haha.
Posted 11/7/2011 11:03 PM (GMT 0)
aguywithuc thanx, im going to look up some of those meds

PoopyStar! wow our colitis are twins! Yea im thinking about going on 6mp as well. The reason why you have to take both is because(I was told by my GI) 6mp doesnt start working right away. Its takes many months for it to kick in therefore your Lialda is supposed to take care of you until the 6mp kicks in.

My GI wanted me to stop the apriso and get on pred once again this year while on 6mp. I'll pass on that!!! I think I'd rather stay on the apriso and keep feeling ok until it kicks in. IF I decide to take it.
Posted 11/8/2011 3:06 AM (GMT 0)
LDN! Seriously. Saved my life, and a whole lot of others. Do you research here on the forum.
Posted 11/8/2011 11:56 AM (GMT 0)
I agree Enree - if you're in remission with Apriso and feeling good why go on the Prednisone while starting the 6MP. I am on Prednisone now so I'll stay on it while I start the 6MP (although I'd rather not, but I guess my GI is afraid I'll flare if not). I'm at least down to 35mg from my original 60mg! Ugh. I hate the stuff. We'll have to keep in touch about how the 6MP is treating us! I really hope I don't get any crazy side effects. Still waiting to hear back about my labs before I start it.
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