Intro Post and Suggestions Needed

Hi, this is my first post though I have been reading for a while. I have had UC for 9 years with bouts of flaring then remission.  When I was diagnosed I was told it was in the rectum and I always responded to suppositories or enemas.  My latest flare started 5 months ago and my c-scope showed it being in the rectum but about 5 inches into the intestines as well.  I as given Asacol 400 MG three times a day as well as enemas.  After using the enema I stopped seeing blood and within a few weeks was completely normal again.  I was tapering off the enemas first for 6 weeks every other night which went well.  After a month of taperting two nights off and one on the flare came back worse then ever.  The Dr. put me back on enamas every night and it’s been 10 days I am still doing terrible.  Does anyone have any suggestions or what I should try next?  I have a Drs. Appt next week but she’s going to have to try something different I think.

 

Thanks, Patty

 

p.s. I was so glad to find this forum

Hi Patty,

Welcome! I am pretty new here too and it was great for me to find this!!! I was taking 2400mg of Asacol two times a day (total of 4800mg) and that was a maintenance dose. My UC mainly affects my rectum as well. When I was first dx'd enemas did the trick. I haven't take them since then which was 7 years ago.

I am not sure about 1200mg a day being enough for you for maintenance dose? I would ask your Doctor about taking 4800mg a day. I was on that for nearly a year and did great, until I stopped taking like I was supposed to b/c I felt fine. Now I have been taking my meds like I was supposed to for the past 10 weeks and am doing much better. The first 9 weeks on Asacol and my 10th week (current) taking Lialda. Lialda is the same as Asacol but you take it once a day rather than twice or three times.

Also, w/the Asacol, my Doc told me to take 500mg of calcium and vit D 2xday.......reminding me to take my 2nd one now!

HTH!
Beth

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Beth, 31

Hi..welcome to the forum!

Your asacol dosage isn't high enough. Stay on the enemas until you feel "normal".

Your tapering of the enemas should have been to once a week..not every second night and then dropped. Basically, the tapering finds you a maintenance dosage.

5ASA meds are slower to work, but can be used for long, long-term use.

Please be patient, use the enemas nightly until you're feeling normal, but do ask the doc to put you on a bit higher dosage...I would suggest maybe 3 asacol twice daily or 4 asacol twice daily. Three times daily isn't a must...many of us forget the middle dosage and end up taking them twice daily anyway.

Patience....I had many times during the first years when I was on the enemas nightly for up to 3 months.
When you're ready to taper the enemas..it too depends on your symptoms.
We'll talk about it then.

Welcome again,
quincy

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Thanks so much for the responses. It's the first time I had UC comrades to talk to. I made a mistake with the Asacol. I take 2 tables 3 x a day for 2400 MG for the day.

Also I was on the tapering off of the enemas when it came back. I hadn't ceased using them.

I will try to be patient. Also I had no idea about the vitamins I should have been taken the Asacol.

Patty

Post Edited (PAD) : 9/5/2007 10:48:45 AM (GMT-6)

Just wanted to say Hi and Welcome! Looks like you have gotten some solid advice already!!

And hey if you accidentally double post you can always delete your own post. Just hit the X on the right side of the post box.

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Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum

You may want to do some research on omega-3 supplementation (a natural anti-inflammatory) and probiotics... and experiment with dietary changes. These are natural approaches that can help you heal and reduce your need for meds.

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Diagnosed with ulcerative colitis spring 1999