Update

I've been on Colozal for 3 full weeks now and my doctor said it really takes 6 weeks to start seeing the benefits. I've already noticed no urgency, which this is good for me. I still have blood but my doctor said that's from my hemmroid. It's hard to believe b/c the blood is not always bright red. I'm on 2 colazol 2 times a day (4 pills total) do you know if they are time released? I couldn't find that information anywhere.

Hi, THEREAREM., glad to read that you continue to improve.  The standard dose of Colazal is 3 X 3 capsules daily for at least 2 months. So keep taking the med! It should be helping your gas problems, too. Enjoy the relief-- I sure do! RE white dots on ulcerated colon tissue: my gastro explained that it is "dead tissue" & therefore grayish, like skin cells that slough off around a sore or injured spot on outside of one's body. Hang in there-- it's sounds like you're on the right track to remission. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon, which is responding)

I had the same thing happen, I believe it was also while I was on Colazal. I actually had a point where I honestly couldn't remember the last time I had passed gas. I just never had gas! It was pretty great, though I have no idea why it happened, haha

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Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
Primadophilus Reuteri
20 mg Citalopram (for depression/social anxiety)
125mg Imuran

Hey Old Hat,

Have you ever been off medications? I took asacol last year for 6 weeks with rectal meds went to the doctor they said ulcers are all gone get off meds. I did and 2 months later everything came back. How do you know when to get off medications? My doctor gave me 120 pills maybe for 8 weeks worth, I don't know exactly. It says suppose to be in remission within 6 weeks or something like that. I don't know if I'm taking enough (I'm suppose to be on 6 a day, I'm taking 4 a day right now) I'm seem to be doing fine.

THEREAREMIRACLES-- beware: it is dangerous for a UC patient to drop all meds!!!!!!!!!! I learned thru bad experience that I can only last 3 weeks off med until I flare again. It's not worth the risk. We have to find a med that best agrees with our body & stay with it-- until some major break-thru occurs in treatment of IBD, which is still going to take a while. Any doc who tells you to drop all meds because you feel cured does not understand the fickle nature of UC! Taking med while in remission, if we reach remission, is like paying for health insurance. We sign up for & pay for health insurance as a "safety net"-- in case something goes wrong for us. It's the same idea as taking maintenance med when a UC patient gets to remission. You lower your risk for really bad stuff to happen./ Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon, which is responding)

Hi Old Hat

It sounds like we have the same left sided colitis and Colozal is working for me. I guess I should get the idea out of my head that after 8 weeks I'd be off this stuff. Last time I was told it was gone and got off me 2 months later all the symptoms came back.

I have up my colozal to 3 and 3 (am and pm) but noticed since doing that I have increased in stool, no blood but lots of pottying ( 2 stools a day to 5 today at least) Maybe I will try back down to 2 and 2 I was doing fine on that.

I belive, truly in my heart, that one day I will be free of this. I try not to obsess about it and I'm working on changing my thought pattern from worry to positive (before this job I was more positive, accertive, confident) so I'm working on getting back there. A wonderful book that I have had, but forgot about it and it just reappeared, is Norman Vincent Peal's book, Power of Positive Thinking. The chapter on breaking the worry habit and how to use your faith for healing are awesome! Really, the whole book is uplifting.

 

I was told that 70% of patients come out of remission because they feel good and stop taking the meds. My daughter is now 6 and I was told she will be on meds for the rest of her life. I don't understand why they would take you off, they are to keep you in remission.

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Joan

therearemiracles.... I think your positive feelings and faith should be open to and accept the fact that you do have UC and it's lifelong. Not a death sentence, however. Please don't set yourself up for failure by testing your "faith" by going off your meds.

I strongly suspect you may believe yourself a failure somehow if you go off your meds and flare again.

Does your book explain self-fulfilling prophecies? They work on all degrees of results.

quincy

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THEREAREMIRACLES-- there's no harm in thinking positively, just be practical about continuing with 5-ASA meds to achieve remission from UC + to stay in remission. You wrote above that the doc gave you ca. 120 Colazal capsules-- is that with a refill? If you have no refill, you should either get one or make an appointment to discuss maintenance med with gastro. It is possible to go on a "step-up, step-down approach" to maintenance med, where you take a lower than standard dose of Colazal daily while keeping a supply of oral med + Rowasa on hand in case symptoms change for the worse & you have to increase meds again to prevent a flare. However, I'd advise you NOT to decrease from 4 Colazal daily 'til you get down to 1 bm daily or 1 on alternate days + well formed. A gastro who is familiar with IBD treatment will not hestitate to give you refills of 5-ASA meds so that you can keep a 1-2 month supply at home in case of sudden need; we should all keep what helps us handy-- just in case. (Doctors go on vacation, pharmacies change hours, etc.) Prepare yourself to deal with UC as a continuing problem, organize your med supplies, & you'll likely become an expert manager. Quincy & I keep urging you not to go off 5-ASA meds because we don't want you to get pancolitis & have to take steroids or even stronger meds! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon, which is responding)

That's for the advise. I sure notice a difference being on meds and being off and being off them is a nightmare! That's why if anyone new posts that they don't want to take medication or are afraid or maybe want to try the natural route, I'm for the natural route, but I have found the RX drugs only helped. I would advise them NOT to do it on your own like I did and accept the medication. I'm feeling better ever day and my attitude and happiness have returned. I look at my medication as a vitamin and take comfort in knowing it making me feel better.

In saying that, I'm not ready to jump off them, I do have refills until 2008. I feel to good to quit now.

 

Thanks,

Linda

Brava! Glad to hear it, THEREAREMIRACLES, because there is no point in returning to Square One, where you suffer over & over. Taking the 5-ASA med sure beats not being able "to fart without something else flying out into your pants"!!!!!!!!!!! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon, which is responding)

ohhhh, I am going to ask my Doc about Colazal, I have so much gas all the time, it hurts and a fart isn't always a fart anymore, sometimes it's a shart and I don't want to take the chance so most times, when I don't have privacy for the bathroom, I suffer with painful gas. I tried the phayzime and didn't seem to do much, maybe I just need to keep on trying for a bit?

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Beth, 31

OMG that Shart is too funny! I've never heard that before. That describes my whole flare! Colozal is working great for me. Asacol worked for me too, but I had side effects from it. I'm not noticing anything with colozal. I don't fart at all during the day. It's only when I poop does the gas come out or during the night. I guess that's good, but I wonder about it b/c I was a gassish planet (named by my husband, called Linda my name) that's all I did was fart and then it came to a halt after taking Cipro antibiotics. Whatz up with that I wonder? I thought you're suppose to fart and I don't so I think it weird. I do take fiber too and this helps lessen the farts some people say.

I don't want to think about my butt or gut anymore! I'm sure we all know that feeling, right?