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Colazal confusion

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Ulcerative Colitis
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Posted 9/20/2007 9:14 AM (GMT -7)

Hi,

I went for my colonoscopy follow-up yesterday morning. The dr. told me that I have mild pancolitis, that I'm at increased risk for colon cancer and must take colazal to reduce my flare-ups and my risk of developing colon cancer. He said that I may still experience flare-ups, though.

He told me that I have to stay on Colazal indefinately. The medication info I've read says that safety hasn't been established in taking this medicine past 12 weeks. What's your experience with this medicine? Does anyone else take it for extended periods?

Also, does anyone know of any effective alternative therapies? How can I find out who's a good dr. in my area for a second opinion?

Posted 9/20/2007 9:29 AM (GMT -7)
Ccfa.org has a list of gi doctors based on your area. That is where I found mine. As for Colazal I have been on it for over a year. I think you will find alot of members that have been on it long-term. I don't think your doctor is out of line saying you need to be on it indefinitely.
Posted 9/20/2007 10:00 AM (GMT -7)
Colazal recently entered Phase 3 (of 4) clinical trials sponsored by U.S. NIH. Its safety/efficacy for long-term patient use is still under study; when my gastro 1st prescribed it for me in 2003 it was with explanation that "it will eventually get full approval" (of the Feds).

It now seems that the standard daily dose has been lowered from 9 to 6-- many on this site report taking 9 or more daily w/o side effects, though. I have done better on Colazal than with any of the earlier oral 5-ASA meds. Apart from mouth dryness (remedied by drinking some water every hour/daytime) the only problem I've had with it was AM dizziness at ca. 10 weeks on 9 capsules daily + bad interaction with large dose of Vit D prescribed by gastro at one point. How many capsules does your doctor prescribe daily? / Old Hat (nearly 30 yrs with left-sided UC; currently on 6 Colazal daily for July flare in descending colon; should be back in remission again soon)

Posted 9/20/2007 11:08 AM (GMT -7)
Thank you both for your helpful info. I'm on 9 (750 mg) pills/day. I saw something about decreasing dosages online, but I mentioned to my doc that I sometimes miss a dose (thus taking 6 pills/day) and he told me not to do that. (I explained that I don't do it on purpose.) He scared me about an increased risk of colon cancer and added that taking the colazal decreases my risk. I'm not having any side effects of the drug. (The mesalamine suppositories gave me terrible side effects and I could only tolerate taking them for 9 days right after the colonoscopy last month.)

It seems like I need to resign myself to taking meds for the rest of my life. I think I'm still kinda in shock about the seriousness/chronicity of this illness.
Posted 9/20/2007 11:20 AM (GMT -7)
I started out at 9 and have tapered down to 5 or 6 per day and am doing fine with that. I do plan to stay on it long term and did go off last year and went back into a flare. I think the idea of it helping to reduce the chances of colon cancer goes with the fact that the drug is supposed to help prevent or reduce the inflammation. I wouldn't recommend tapering down some until you have been on it for a good while and your body has adjusted to it and of course if you are doing well and in remission. I dont know of any side effects and all seems to be okay while on this med. I've been on it for well over a year now.
Posted 9/20/2007 12:10 PM (GMT -7)
It's never easy knowing that you will be on meds for the rest of your life. It takes some getting used to. I am still amazed at the amount of pills I take and I've been on 5-ASA's for 15 years. It truly does get easier in time and one day you will take your pills and not even bat an eyelash or think about it anymore, you just do it.

I've been on Colazal for 3 years because I stopped responding to Asacol. In the beginning, I just had a headache and slight out of it feeling but it went away after a few weeks.
Posted 9/20/2007 2:14 PM (GMT -7)

Ditto here Traci,

I've been on Colazal since being diagnosed.  Tried getting off completely and had major flare.  Tried going to 6 a day and had too many problems so I've learned my lesson.  I too worried about the length of time I had been on it as every thing I had read always referred to a few weeks duration. I know what a few days without it will do.  I'll take the present dose for as long as it takes.  Good luck. 

Posted 9/21/2007 6:53 AM (GMT -7)
Yes. I went to the ccf website and feel confident that my doc's got me on the correct regimen. Thank you all for your posts. It helps to know that I'm not the only one.
Posted 9/21/2007 7:10 AM (GMT -7)
I've been on Colazal for 1 1/2 years. It works for me along with Rowasa but I had a lot of side effects with it. Once in remission, I started to lower my dosage (I was initially on 12 pills a day). I now take 4 pills a day and still feel fine.
Posted 9/22/2007 8:17 AM (GMT -7)
I've been on it for quite some time and no bad effects. Doesn't do the trick totally though, still trying to taper of the Prednisone and I've had two Remicade infusions, but the effects of that seem to go away after about a month. I have three weeks to go til my next one.

As far as compliance, the mid-day dose seems to be the one most easily missed. I take my meds at 6 am, 2 pm and 10 pm. I set my PDA alarm for the 2 pm does and just take the others when I get up and when I go to bed, as that's usually close enough.

As far as the colon cancer, don't let your doctor scare you. Yes, your risk is higher, but since your under the care of a GI and will be getting more frequent colonoscopies due to your diagnosis, you're much more likely to have anything that developes detected early and taken care of than someone without UC or Crohns who is scared to have a colonscopy and thus may be beyond help when their problems are discovered.

My GI starts about every visit by telling me UC is "curable," I just have to have my colon removed. I still like him as my GI, but to me that's not a cure. Yeah, I have a hangnail, just amputate my toe. I know a lot of people here are thrilled and living great lives without their colon, but I'm a long way from being ready for that. Wow, I am soooo digressing.

Meesh
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