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

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scootaboy
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 9/3/2008 8:10 AM (GMT -6)   
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!

JoyceMarilyn
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/3/2008 10:06 AM (GMT -6)   

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. 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/3/2008 10:27 AM (GMT -6)   
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.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


saskia
Regular Member


Date Joined Dec 2007
Total Posts : 31
   Posted 9/3/2008 12:32 PM (GMT -6)   

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? 


*saskia*
pan colitis (diag: Nov 05)
Meds: salofalk7 to 10 tabs/day depending on disease status; imuran 75mg/day; entocort when flaring; cortifoam when flaring; pantoloc; VSL#3; vitamin D and calcium; fosomax


scootaboy
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 9/3/2008 12:38 PM (GMT -6)   
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.

scootaboy
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 9/3/2008 12:39 PM (GMT -6)   
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....

saskia
Regular Member


Date Joined Dec 2007
Total Posts : 31
   Posted 9/3/2008 12:47 PM (GMT -6)   

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)


*saskia*
pan colitis (diag: Nov 05)
Meds: salofalk7 to 10 tabs/day depending on disease status; imuran 75mg/day; entocort when flaring; cortifoam when flaring; pantoloc; VSL#3; vitamin D and calcium; fosomax


scootaboy
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 9/3/2008 12:55 PM (GMT -6)   
Ah that's interesting, Saskia. Maybe I should go back on the foam for a few weeks then?

saskia
Regular Member


Date Joined Dec 2007
Total Posts : 31
   Posted 9/3/2008 1:26 PM (GMT -6)   
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.

*saskia*
pan colitis (diag: Nov 05)
Meds: salofalk7 to 10 tabs/day depending on disease status; imuran 75mg/day; entocort when flaring; cortifoam when flaring; pantoloc; VSL#3; vitamin D and calcium; fosomax


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 9/3/2008 7:53 PM (GMT -6)   
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!
26y old male med disharge veteran
 
Diagnosed with UC (lower proctitis) in 2004
Current daily treatment:
1000mg sup asacol
2400mg oral asacol
40mg prednisone
75mg azathioprine
20mg Nexum
 
Still 4-5 bloody, mucus bowel movents a day! Blah...


Luna0
Regular Member


Date Joined Jul 2008
Total Posts : 83
   Posted 9/3/2008 9:43 PM (GMT -6)   

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. :-)


Tawn 
18 years old, College Student ~WAHOO GO CATS=)
 
Diagnosed in 2004
Currently on:
Remicade
Imuran 3pills/day
And many other over the counter meds.


scootaboy
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted Today 11:03 AM (GMT -6)   
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.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted Today 11:06 AM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted Today 11:07 AM (GMT -6)   
does your username indicate you ride scooter?
If so, what kind do you have?

q
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


scootaboy
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted Today 11:17 AM (GMT -6)   
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?

quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted Today 12:03 PM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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