HELP!! colon needs higher doze every 3 months!

HI,
i started with one canasa suppository (nightly) after my dx in 2009.... it worked but for 2-3 months then i had to up it to 2 canasa a day but this time it did not work. Then my GI put me on 2Xlialda daily (along with canasa)-early 4 months remission, then i had to up lialdaX3 daily which gave me a remission for another couple of months...now i am on 4Xlialda daily plus using Rowasa nightly & after a remission of 4 months i have a flare up again. ...i think i m on highest dose of mesalamine..i can go no further increasing mesalamine. i do pop in 1 canasa sometimes during the day

Does anyone has any advice for me.... i eat very healthy food- no alcohol - no smoking!

HI quincy,
i started with proctitis but at this stage i dnt know what it is. I started rowasa around 6/7 months back but at the same time i had increased my Lilada as well. So i am not sure if that was rowasa or Lialda getting me remission.

My GI asked me to stop canasa totally when i was in remission with 2X Lialda + 2 canasa daily......tapered in a weeks time (infact he asked me to stop immediately but i was little cautious so took one week) and then i got a flare up and it came under control by increasing the dosage of lialda as well as starting rowasa but i didnt start canasa again (but this time i didnt get complete remission) & then i had to stop mesalamine for a week (for laprascopy surgery) and i started with 4Xlialda after surgery which gave me a remission within few days and lasted around 4 months . my present flare started when we went for vacation and despite i didnt eat anything spicy or oily but yes the food was not as healthy as i eat at home.

My symptoms are: blood & mucus in stools, i feel burning sensation in rectum & 2-3 times a day stools which r not formed & neither loose.... infact even after bowel movement i feel that my stomach still has stuff which denies to come out and its noon /evening by the time the left over comes out ** sorry: bad description*** and gas, grumbling right after lunch.

thanks quincy!

Hi...You should start the Rowasa nightly in conjunction with the Lialda.

Your stomach will have food in it up to 4 hours after eating. What comes out will only be from the lower or left part of your colon. Don't get thinking everything comes out at once. It doesn't.

You need to treat the rectum/sigmoid symptoms...and you're doing not bad at 2 - 3 times a day.

I don't know how long you were on your meds previously, but tapering the enemas to a maintenance will help.

Hang tough...it's not that it's not working. I think your expectations and understanding of UC is slightly off.

Patience.

Are you not on the Rowasa at this time?

Are you still on the Lialda?

Are you taking any probiotics? Are you using any fibre supplements?

How are you eating?

q

Ok, just to clarify. You were on the Lialda 4 daily plus Rowasa nightly when you flared again?

q

Oh...is your UC throughout or limited?, can't remember

If yours is limited, maybe you're on a bit too high of a dosage of Lialda?

Maybe your surgery caused a setback..but that was 4 months ago...are you having other problems in that area?

You might also consider to ask the doc for a steroid foam and use it in the morning.

When did the doc take a look last?

q

To me, your rectal meds should be higher than oral when it's limited.

I suggest you leave the baby-making for a while. If you're focussed on that, your emotions and hormones will be high and probably affect your healing of UC.

I don't think you've learnied to use your meds effectively as of yet, and yes...if you taper by one pill every two weeks, see if you improve some of your symptoms.

Now, do discuss this with your doctor before you do so...just say it's to experiment to see if some of your symptoms improve.

The proctofoam is a low dosage of steroid...or you could ask for a steroid suppository if you don't mind using them.

There are some combos.

Why are you on Lialda instead of Asacol?

q

Hey Q-
Do you have an opinion on Asacol vs. Lialda for limited disease? Just wondering as I started on Lialda...would Asacol be better? Just curious. Sorry Zamba, don't mean to hijack your thread.
B

If you feel like you are having incomplete bowel movements, it could also be some IBS along with the inflammation. You did say you were a little stressed and sometimes IBS can result from stress too. You might try an anti-spasmodic. Of course, that just smoothes out the spams. My doc always told me to give the meds time to work but I think if a few weeks go by and I am no better, I get very impatient! I can understand your frustration. Talk to you doc, hopefully he/she will have some suggestions for you.

p.s. Lialda gave me horrible bloating and diarrhea but I was never in any pain while I was on it. It was strange. I really wish it would have worked for me!

@quincy i never knew high dose of lialda might have side effects. I will discuss with my doctor.

@jeanneac: IBS might me there too..i get stressed too quick and m unable to sleep at night when ever i m stressed...sleepless nights till the reason for stress goes away.

quincy said...
It's a difficult cycle, but yes....high dosages of 5ASA meds, especially oral, can cause the same symptoms as UC. That's why one should start at a low dosage and increase.

But, patients don't want to be patient sometimes...understandably.

q

Thanks Quincy, so Lailda might is causing these UC like symptoms.....i m planning to change my GI- because he will again ask me to try immune suppressant

All 4 lialda at once in morning after breakfast.

quincy said...
Hi...well, you could try splitting it, but dropping one pill at night. 2 in the morning and 1 at night....see if that improves some of your symptoms (that is if you're OK to try lowering the dosage of Lialda to see if it's too much of a dosage for you), which I think it might be.

q

Trying this from tomorrow, thanks!