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Ulcerative Colitis
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Posted 2/9/2009 9:57 PM (GMT 0)
I was diagnosed with UC May-2008 after having a colonoscopy for constipation and bleeding. I was prescribed lialda and took it for a few months then noticed my symptoms getting worse. They seemed to get better after I stopped taking the drug. Then, in December, 2 days before Christmas, I got what I thought was the flu. I had severe diarrhea (like we all know by now 15-20 a day) for 9 days straight. Needless to say, I was hospitalized through New Years.

I now am on Asacol. I just finished prednisone last week. I still have yet to go in remission and have been on the medication for 7 weeks. Has anyone had a flare up for 7 weeks and the medication ended up working? I would appreciate anyone's help in this matter. I am trying to stay out of the hospital! Thanks!!

Posted 2/9/2009 9:57 PM (GMT 0)
I take Asacol (4 pills, 3X's a day)
Posted 2/9/2009 10:04 PM (GMT 0)
I read here often that people often start flaring again when they finish pred.

Asacol helped when I only had diarrhea and never any formed bm, but it did not help with urgency, blood, mucus etc that is so bothersome. So no, asacol 12/day did not work by itself for me after 6 months.

As sick as you have been, I think you should speak with your GI about your medication which may need to be changed or added to.
Posted 2/9/2009 10:10 PM (GMT 0)
I spoke with him today and he is putting my back on Prednisone (3X's a day). I asked him if it might be a reaction to the medicine and he said I am just flaring up worse. He said people sometimes never go into remission and they have surgery. I have done my research and don't think that being 29 and diagnosed less than a year ago would justify surgery. I've read that different medications work for different people. I agree with you. What helped with your urgency and blood and cramping?
Posted 2/9/2009 10:15 PM (GMT 0)
I'm taking an ASACOL Enema, aswell as the ASACOL tablets. They have been effective with me, although I am takin Cyclosporin too. Hang in there buddy; I'm sure it will kick in soon! These things take time to get into the system!!
Posted 2/9/2009 10:39 PM (GMT 0)

I would say that Rowasa has given me the most relief from blood and urgency, but I haven't really been totally free of symptoms for a long time.  My Uc is stubborn too.  I don't think there is too many out there that got better without putting in a goog amount of time and effort and even a bit of suffering trying to find the right combination of meds, diets, lifestyle, before finding remission. 

best of luck. 

Posted 2/10/2009 12:13 AM (GMT 0)
Why did you finish prednisone if you are still flaring?? Don't you think you should have stayed on it until you were better?

Asacol is for maintenance, but it doesn't keep you from flaring sometimes, in my experience.
Posted 2/10/2009 3:12 PM (GMT 0)
Hi Peety,

I finished prednisone because that is what my doctor had me do. I am new to this and trust that my doctor has me on the path to recovery. He had me on it for 6 weeks, tapered. I spoke with him yesterday and he is putting me back on it. Coming off seemed to have some side effects. I have had a complete acne breakout, ugh, and seem to be pretty emotional. Makes me feel a little crazy. Anyone else have these effects from Prednisone?
Posted 2/10/2009 3:22 PM (GMT 0)
Prednisone is properly used in short courses; it is not appropriate for long-term therapy because of the side effects. If used for a long time (years) it can cause cataracts, diabetes and brittle bones. So your doctor's treatment was right.

Some of us are unable to take Mesalamine, which is the drug in Lialda, Asacol and Rowasa. If you find that the enemas don't help, you could be in this group. In my case, Asacol made my symptoms worse, so I take Balsalazide. It's another 5-ASA drug, in the same category as Mesalamine but not the same drug.

If you're unable to be controlled with 5-ASA drugs, there are other, stronger drugs such as immunosuppressants (Azathioprine, 6-MP) and biologicals (Remicade, Humira.) These are newer drugs with more serious potential side effects. Some people are also helped by diets or supplements. You'll see a lot of discussion about that here. A good place to start is with the UC resources thread at the top of the page.
Posted 2/10/2009 8:30 PM (GMT 0)
If asacol is not helping any then try imuran if you havn't already.

:)
Posted 2/10/2009 8:37 PM (GMT 0)
Hi Whatsaflaredown...what was the initial dosage of Lialda you were on?

What were your original symptoms before diagnosis?

Is your UC throughout or limited?

I do believe that some doctors put patients on too high a dosage of 5ASA firstly..sometimes the patients become intolerant to the 5ASA and other meds are required.

I also believe that oral/rectal regimen of 5ASA is a good way to start...lower dosage of 5ASA and then increased if needed rather than starting at the max.

Hope you feel better soon.

q
Posted 2/10/2009 10:21 PM (GMT 0)
I started on asacol after being diagnosed too and it worked right away, I was back to normal for like 4 months then slowly the flare started and got pretty bad. I got on prednisone and it is doing nothing for me but I just started mesalamine rectal dosages and if you can keep it in you all day it's working pretty good for me. I've noticed a big improvement in the past couple days. Taking the rectal meds isn't tough either i'm already used to it.
Posted 2/10/2009 10:27 PM (GMT 0)
Ok, I'll bite....Whatsaflaredown?
Posted 2/10/2009 10:48 PM (GMT 0)
First.. to answer quincy,

I was on the same high dose as I am now with asacol (4pills 3X's a day) except they were horse pills. My original symptoms were puss and blood in the stool. I had dealt with constipation for years and never went to the doctor for it. I had a colonoscopy in May 2008 and was diagnosed with UC. I had never had diarrhea to this point. Llialda seemed to work some for a month or so and I decided to quit the medication. In Dec. I got the flu and it turned into a horrible flare and I was hospitalized for a few days. I have UC in the lower 3rd of my colon (when I had the colonoscopy).

Since the hospitalization, I have had a flare up, which answers my handle name for madabs, I really want to know what a flare down might be :)
People talk about flare ups and I just hope that I can have a flare down. After reading posts though I know that I need to be patient.

Cadillac Lover- I take Canasa suppositories and they seemed to help before I was in the hospital but now I can't keep them in. Before bed is when I was told to take them. What rectal medication do you take that can be taken in the day?
Posted 2/10/2009 10:51 PM (GMT 0)
Sorry, the lialda worked for a month or so then my symptoms seemed to get worse, so that is why I quit the meds. The Canasa sup. worked well for the blood so I kept taking those. If I missed a day though, the blood would be right back.
Posted 2/10/2009 11:48 PM (GMT 0)
Hopefully if you stay with the prednisone dose a little longer before you taper -- not for a very long time -- you'll have better success. My doc doesn't "allow" tapering until I can report that I'm better -- no pre-set schedule. It's the pre-set schedule that I find baffling.

Regarding Asacol, I've been taking it for a long time, but I thought I had another bottle and not only did I not, but my RX needed to be renewed, so I've been without it for a week, the longest period ever. I'm not doing any worse, but certainly not better. I am hoping that when I start taking it again it will jumpstart things and do wonders again, like it did 20 years ago! I know that is silly.

Anyway, I hope you can figure out a med regimen that works for you.
Posted 2/11/2009 2:28 AM (GMT 0)
Hi there! Sorry to hear about your recent hospital stint. I can totally relate to you. Unfortunately every time I would come off of prednisone my flare would come right back. I have been hospitalized twice since last March and been on 3 different treatments of prednisone PLUS 12 asacol pills and all the rectal meds you can think of. I never got out of the flare. So I finally put up the white flag and went on 6-MP. SO I am currently taking 75mgs and tapering my prednisone down. I hate prednisone so much. All the side effects you mentioned are common. I never sleep either on it. Anyway, do not start researching surgery. How much of your colon is affected? Describe your flare? My major symptoms were always blood. But prior to both hospital stays I was going at least 25 times a day. I couldn't hold water down.

I wish you the best...
This forum is great!!!
Posted 2/11/2009 6:05 PM (GMT 0)
Hi Wishful,

When I was diagnosed, first colonoscopy in May of 08, the lower 3rd of my colon was inflamed. The hospital stay was after Christmas and through New Years :( . My flare currently is D 7-10 times a day, blood in D, painful cramping throughout the day. I usually will go 2 times throughout the night. Mostly night and morning D attacks. I will have like 2 throughout the day. Like you, prior to the hospital, I went a week and a half with 20 D's a day, couldn't keep anything in me.

By the way, I HATE predisone too and I have only been on it once for like 6 or 7 weeks. The doc wants me back on it now but I really don't want to. I have acne around my mouth and all across my shoulders and chest. It also really messed with my emotions when I was tapering. As soon as I was off the prednisone I had 4 or 5 really bad days. Are you currently on prednisone? How long did you take it?
Posted 2/13/2009 12:04 PM (GMT 0)
Asacol made my UC worse. I've read several other posts here from people who had the same experience. I stopped asacol and I got better the within a day or two.
Posted 2/13/2009 1:19 PM (GMT 0)
My two cents is to try acupuncture, diet, and anything else non-chemical you can find if you haven't tried it yet. I wish I had gone down that seven years ago before hitting the Asacol. You have just been diagnosed fairly recently so you need to nip this in the bud now!

Good luck to you.
Posted 2/13/2009 2:03 PM (GMT 0)
My 13 year old son (diagnosed in last May-proctosigmoiditis) was on Asacol for months and I would see whole pills in his stools.  Even though our doctor said that this was "normal", I had a hard time believing that if the pill came out whole that it was dispursing in the colon as it was meant to!  I asked for a switch to Colazal.  He was on the generic for a couple of months, then we upped the dose from 3 to 5 a day.  We also switched to the brand name Colazal.  I started him on the probiotic VSL#3.   We then started Cortifoam every other or third day.  This combination has worked very well for him the past couple of months, and even though I know things can change, I am thankful, finally, for the lack of blood every time he goes.    I hope that you find something that works for you soon...

Posted 2/13/2009 2:20 PM (GMT 0)
     Hi Whats....I had the exact same symptoms as you when I was first diagnosed.  I think I know this disease like the back of my hand now, been suffering with it for over ten years.  Last year was a doozy.  I was hospitalized for ten days in May.  I had to take prednisone for seven months before reaching remission.

     When I was first diagnosed, the doctor had me on Asacol.  Since my UC is located primarily in the rectum, he switched me to Colazal and I have been on it ever since.  I believe it's been at least seven years.  Because of the long term prednisone use I now have osteoporosis.  My GI doctor put me on the 6MP about five years ago.  He hoped the 6MP would help keep me in remission.  I have a flare once a year though.

     May I ask what dosage the doctor starts you at on the prednisone?  Last year he was starting me at 30 mgm with a 10 mgm per week taper.  I would be weaned off the prednisone completely and wham....two weeks later I started with symptoms again.  It wasn't until he "jump started" the prednisone at 40 mgm (along with the 75 mgm of 6MP), with a 10 mgm per week taper that I was able to reach remission.  Last dose of prednisone was Nov 1st.  In remission now but yesterday I had far too much fiber and today I have cramping.  I inserted a Canasa suppository this a.m..  Hopefully I am NOT starting a flare!

Posted 2/13/2009 4:04 PM (GMT 0)
Christine,

First off, I hope you aren't starting a flare as well!! The doc has me at 30 mg. First time I was on it I tapered weekly and while I tapered the symptoms got worse! Now he has prescribed me to take 30 mg until things get better, not sure how long. I will ask my doctor about Colazal.

Jone Bone and Hobo,

I am seriously considering stopping the asacol to see if I have improvement. It really has gotten worse since I have started it. Thanks for the info.
Posted 2/14/2009 1:15 AM (GMT 0)
Go natural mate, if it's in this early of a stage, try to do anything with the least amount of side effects. Asacol works for me, but I still wish I had gotten off it when I was younger.
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