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What should I be looking out for now symptoms have gone?

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Ulcerative Colitis
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Posted 9/3/2008 1:10 PM (GMT 0)
Hi

I was diagnosed about 5 weeks ago. I was given 3000mg/day of Pentasa and a 3 week course of Colifoam. After a week of being on the meds, my symptoms cleared up and I've been fine since.

Went to the docs and she said that I should go down to 2000mg/day for 2 months and see how I do. She said that if it didn't work I should up my dose again.

But as I'm new to this I'm not sure what to be looking out for. How do you know you're about to have a flare-up?

When I first went to the doctors it was because I'd had blood and mucus and a loosening of the stool, but I didn't have any pain or severe diarrhea. I'm now slightly paranoid because I think maybe I have been having slightly looser stools this week, but I don't want to start upping my dose if I don't need to. I don't have any other symptoms.

Your thoughts greatly appreciated!
Posted 9/3/2008 3:06 PM (GMT 0)

I am in the same boat as you!  I started a food journal try to eliminate the "bad" foods.

I hope the following is not to gross, BUT on another support group forum we were discussing floating stools and the connection to a flare.  I think it might be a good thing to keep an eye on as this maybe the first noticable sign we have of a flare. 

Just google floating stools. 

Posted 9/3/2008 3:27 PM (GMT 0)
If you also have any degree of IBS, which a lot of us do, looser stools can be related to diet. I watch for mucus and/or blood, but my first twinge is usually crampy abdominal pain. I have proctosigmoiditis, so mine is usually very low in my abdomen.
Posted 9/3/2008 5:32 PM (GMT 0)

It could be a tapering (or lack of) issue.  Most do better if they slowly taper down the dosage of meds rather than reduce by a substantial amount abruptly or stop abruptly.  Did you taper from from 3000mg to 2000mg and did you slowly taper off the cortifoam? 

Posted 9/3/2008 5:38 PM (GMT 0)
Hi all

On the tapering I had a week of two doses a day and then 2 weeks of one dose a day. On the Pentasa, I went straight from 3000 to 2000mg - ie 6 tablets to 4 tablets.

I'm not sure that anything is actually 'wrong' yet - but when I was on the Colifoam my BMs were so perfect I couldn't believe it. Now they are a bit looser, but I only need to go once a day.

I guess I'm worried that it might be coming back, but if I'm trying to ease of the drugs then I don't want to be overly cautious and panic everytime I have less than a text-book perfect stool!

Maybe I should call my doctor and see what she thinks? I guess the real test is for her to have a look inside.... ugh.
Posted 9/3/2008 5:39 PM (GMT 0)
Sorry -, just to clarify.. the first paragraph - the 1 week of 2 doses and 2 weeks of 1 dose was for the colifoam steroid foam stuff....
Posted 9/3/2008 5:47 PM (GMT 0)

I assumed that's what you meant.  My own experience with cortifoam is that going from one dose a day abruptly to nothing can be a bit problematic.  The second time I tapered, I went from 1 dose per day to one dose every other day for about a week, then every two days and then every three, every four and then stopped, going from one dose every two days to one dose every four didn't take me a long time.  I think with the oral meds, a lot of docs suggest a taper of 500mg per day, but some can handle a reduction of 1000mg per day (depending on my status, I can do this with the mesalamine; it just depends on how high a dose I am starting from)

Posted 9/3/2008 5:55 PM (GMT 0)
Ah that's interesting, Saskia. Maybe I should go back on the foam for a few weeks then?
Posted 9/3/2008 6:26 PM (GMT 0)
I have done that.  I went back on cortifoam at one dose per day and then began to taper after about 6 to 7 days.  While not very systemic in effect, the foam is still a steroid and thus should be tapered (even though the packaging may not instruct this or your GI doesn't make a point of telling you.)  I learned the hard way, of course, because I couldn't wait to get off the stuff.

Posted 9/4/2008 12:53 AM (GMT 0)
My first signs of a flare have always been bloating/gas, cramping and almost a feeling of constipation. My flares have always set on very quickly without much warning...keeps me on my toes!
Posted 9/4/2008 2:43 AM (GMT 0)

First off what colitis do you have? Some people have diarrhea while others have constipation. Sounds like you have the diarrhea UC. So I would look out for any noticeable loose bowels. If it persists for more than a week or if it gets worse I would definitely tell your doctor. *I wouldn't wait a week if it is noticeably different. And pain is never good. But it sounds like your doing good. (nock on wood) I don't wanna jinx it. :-)

Posted 9/19/2008 4:03 PM (GMT 0)
Thanks for your advice - I upped my dosage to 2500mg a day for a couple of weeks and have now cut down to 2000mg for the last 5 days. So far everything seems totally normal. So fingers crossed. Tapering seems to have worked.

Am going to see the doc in about 6 weeks who will probably suggest tapering further but rather than cutting from 2000mg straight down to 1000mg, I might do a couple of weeks of 1500mg.
Posted 9/19/2008 4:06 PM (GMT 0)
Hi....sounds like a plan...all you can do is see how you do. Since you're vigilent...you'll notice changes.

Do you have any rectal meds left?

q
Posted 9/19/2008 4:07 PM (GMT 0)
does your username indicate you ride scooter?
If so, what kind do you have?

q
Posted 9/19/2008 4:17 PM (GMT 0)
Hi there

I don't have any of the foam left, no. So I havent actually used it for 4 or 5 weeks. I have a repeat prescription so I might pick some up next time I need to get some more Pentasa, just in case. Right now I feel great, though and my BMS are totally normal.

Actually - one thing I have noticed, is that I've gained a few pounds since I started taking the meds. I'm guessing this might be that my body has got better at absorbing everything and all these years I've been taking on more calories than I needed but not digesting them properly. People often said "how can you eat so much and stay thin?" - I think maybe now I know why. Is that a normal thing to happen to someone recently treated for UC?

I do ride a scooter - its not a very good one! It's a Vespa ET2, 50 cc - but its great for bumming about London, where I live.

How about you?
Posted 9/19/2008 5:03 PM (GMT 0)
It's good you have a prescription in case. I would, however, suggest you ask for a prescription of a 5ASA retention enema or the foam enema such as Asacol, Pentasa or SAlofalk..whatever is available over "yonder"...lol!

I agree with the weight gain...could partly have been from the steroid enema, however...but it's good you're gaining some weight.

I used to eat anything all my life...thin naturally...but middle age helped put on the weight. I've since lost a bit by eating much better..meaning better choices. I do eat all of the food groups, however.

I don't drive a scooter, but my husband just got one this past Spring...an Aprilia Scarabeo 200. He's enjoying it immensely...and the lower price of gas consumption.

Keep us posted as to how you're doing...
q
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