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Ulcerative Colitis
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Posted 3/11/2008 9:09 PM (GMT 0)
Well it seems after several months of being in remission, I've started to flare...I am one of those who thinks it would be ok to stop my meds to see how long I can go without them...That was a huge mistake!!! I started to see some changes a few weeks ago when I was under a bit of stress...Urgency at first, then came the mucus, then a trace of blood, now today my stomach has been upset all day...Some "D" and then some gas that turned out not to be gas if you know what I mean...Sorry for the graphic detail, but I could just kick myself for taking such a risk...So, I don't really know what to do now...I don't see my GI until next month...I have started to take my asacol but I don't really think it ever helped me in the first place...Oh well, I guess I will wait and see what happens...All I can say is I hate it when I make stupid descisions!!!!
Posted 3/11/2008 9:12 PM (GMT 0)
Can you get a hold of some rectal meds?  That may help until you can get to the doctor.  I hope you feel better.

Posted 3/11/2008 9:22 PM (GMT 0)
Don't kick yourself too badly, we learn best by trial and error. Now its most important to get you better! Can you try to get in sooner? If you go to the emergency room they will have a GI for you to see but they like to push steroids in that situation. I would call your GI and ask for rectal meds as lemonhead recommended.

Good luck!
Posted 3/11/2008 9:49 PM (GMT 0)
I agree - don't kick yourself too hard. Live and learn :) In the future, it's best to use this experience as a learning curve. With my GI, if I call him when I'm having troubles, he will just call me in a script for rectal meds. I don't even have to see him.
Posted 3/11/2008 9:59 PM (GMT 0)
ok, you all may think I'm nuts, but what exactly are rectal meds? Are they like suppositories? I have never used them...Do they target the rectum only?
Posted 3/12/2008 12:03 AM (GMT 0)
There are different forms of rectal meds, there's suppositories, foam enema and liquid retention enemas...my favorite is the cortifoam rectal meds...I cannot believe your doc has never mentioned rectal meds to you...you should ask him about them and why he hasn't suggested them to you.

I use cortifoam when I have proctitis caused by my crohns affection my rectom.

:)
Posted 3/12/2008 7:29 AM (GMT 0)
pb4....I believe that his doc hasn't mentioned them...sigh. Frustrating to hear it, isn't it....especially since they've been around for a very long time.

q
Posted 3/12/2008 7:32 AM (GMT 0)
bk1579.....live and learn. You'll eventually get it figured out. We all want to be off meds, but realise that it's not always a possibility.

Rectal suppositoreis target the rectum (remember UC starts there), retention enemas target the rectum and sigmoid. They come in 5ASA and steroid medications.

Try not to assume the asacol did nothing for you....you do mention in your sig that you forget to take them .

Committing to the 5ASA oral and rectal meds might keep you off pred.

quincy
Posted 3/12/2008 9:44 AM (GMT 0)
thanks...i think i will call my GI today and see what he can do for me. I have just started working first shift after being on second for 7 years and sometimes mornings dont go well...i will mention the rectal meds to him...Is any better than the other? Although as with everything else, I guess everyone is different.
Posted 3/12/2008 10:47 AM (GMT 0)
It depends on the severity of your symptoms. If you are only having minor symptoms, you might get away with Canasa suppositories which is basically Asacol in solid rectal med form. But that will only treat the rectum. Rowasa would be the best bet since it's a liquid Asacol and tends to have more coverage. Now if you are having severe rectal problems then the Cortifoam is a steroid based med that treats the rectum while the Colocort (hydrocortisone) enemas treat as high as the Rowasa but is a steroid. Rowasa and Canasa take longer to work but are "less" med while the steroid enema/foam works faster but can have side effects if taken for long periods of time like the oral steroids short usage.
Posted 3/12/2008 4:22 PM (GMT 0)
Hi Bk,

Don't be too hard on yourself, I used to get lax in taking meds and would flare up, it would usually take me a few weeks to a month to get back to normal. Definitely tell your GI they need to know what is going on and why you are flaring. I told mine and he was like yeah a lot of patients do that but it is important not to do that and take your meds, and prescribed me Lialda at that time so I would be more apt to take all my meds.

Hope you are flare free soon. Also e's takes me about two weeks to see a good difference.
Posted 3/14/2008 12:22 AM (GMT 0)
First off let me explain why I stopped the meds...I was having a very hard time remembering to take the asacol three times a day...Sometimes I would get one dose in, then forget the rest of the day...I was so inconsistant and figured since I was still feeling ok while not remembering all the doses, I just forgot to take it on purpose : ) Anyway, that is how it all came about...I saw my GI today and he recommended Lialda for me since it is just one dose a day...Surely I can remember that...I am really curious as to how it will work...When I first was Dx, I was on asacol and I acutally DID remember to take it but it never did any good for me...That is when my GI put me on pred with it...As soon as I was off the pred, symptoms came back...Anyway, what I am getting at is since asacol and lialda are very close to the same, do you all think it will put me into remission or will I have to have some other med to go with it? Sorry for dragging on so long...I just wanted to explain my story a little better...
Posted 3/14/2008 1:10 AM (GMT 0)
Asacol does not work well for all UCers; many of us do better on Colazal or Lialda. The meds dissolve in different parts of the colon, which explains why we can feel better on one or another of them, depending on where our inflammation is active. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)
Posted 3/14/2008 5:02 AM (GMT 0)

bk1579 said...
.Anyway, what I am getting at is since asacol and lialda are very close to the same, do you all think it will put me into remission or will I have to have some other med to go with it?

Asacol can be very effective and can be taken twice daily.  Much easier for us to not forget.

 Lialda is a different formulation and if you remember to take it (on purpose helps..lol)..it will treat the inflammation in the areas it can reach.  The other meds to go with the Lialda are rectal. 

Are you interested or not in taking them?  Has your doc not suggested them to you as of yet?

q

 

Posted 3/14/2008 9:54 PM (GMT 0)
Quincy, my doctor has never mentioned any rectal meds to me...I don't know if that is a bad sign or not...I REALLY REALLY like my doctor and believe he is trying his best to help, but I am confused as to why he hasn't mentioned them to me...When I was in there yesterday I was too busy telling him my symptoms and totally forgot about even mentioning the rectal meds to him...We started tallking about lialda as we had in the past and he wanted me to try that...I also had asked him a long time ago how much of my colon was diseased and he told me "all of it"...I asked him again yesterday and he told me the same thing...I just wanted to double check...I have read that it is considered pancolitis when it effects all of the colon...Is that correct? OH and by the way, I am interested in using the rectal meds, especially if this lialda isn't effective...I work a very fast paced job and don't have time to be running back and forth to the bathroom!!!
Posted 3/14/2008 10:11 PM (GMT 0)
Hi..LOL, I know how it can be when you're wanting to get the all the information out. I started writing lists long ago...you could consider doing so for all your visits.

I have no idea why your doc didn't mention the rectal meds...maybe he thinks they're too basic?? Not all docs embrace them...but since you've been on pred and Remicade..maybe it's worth a try..you have nothing to lose if you learn to treat them earlier and earlier.

It's not that the Lialda can't/won't work...it just might not be enough without the rectal meds. You could call on Monday and request them from the doc saying you forgot to mention them and that you want to try them because you are wanting to cover all the bases...I would suggest Rowasa (I'm assuming you're in the US).

How much Lialda did he put you on?

quincy
Posted 3/14/2008 10:52 PM (GMT 0)
Yes, I am in the US...He put me on 4 pills/day...Right before I had the remicade I was taking 4 asacol three times a day with pred ( I really was taking them...LOL) and I was to continue that until the next time I saw my GI...That was supposed to have been in Jan. but............Anyway, I guess the 4 lialda is the replacement for the 12 asacol I was "supposed" to be taking...That's not it, BEFORE I decided to go to the dr. I put in my perscription order for asacol (My perscription insurance is through the mail) because I didn't have that many left and I was actually going to start taking it again, and now I want be taking it...So I have just spend 63.00 (three months supply) on asacol that will probably sit in my cabinet for who knows how long...Maybe I can use it one day...
Posted 3/15/2008 5:46 AM (GMT 0)
sounds like a good plan.

keep us posted as to how you're doing.

q
Posted 3/15/2008 4:54 PM (GMT 0)
I use both Lialda and canasa (the canasa is as needed).

Go ahead and call the doc and tell him you'd like to try Canasa or some other type of rectal med. Can't hurt. You shouldn't have to go back into the office for that. His office should be able to call that into the pharmacy for you.
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