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bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/17/2008 4:51 PM (GMT -6)   
As some of you may remember I have been going through kind of a mini flair over the last several weeks with no D, very little mucous but light bleeding and some pain, so I uped the rowasa back to every day (over the last 3 weeks) and the bleeding got better and for the last 3 days straight no blood...EXCEPT for this a.m. there was blood scaterred on my stool...what could have happened since for 3 straight days of no bleeding??? I did not change form my usual bland diet...the only thing I did change was seedless rye bread vs white bread and I ate a mutli grain bun that came with a chik filet sandwhich and yesterday I uped my fish oil/omega3 from 1 to 2 capsules but I just read that fish oil/omega3 is a blood thinner!!!
I feel fine and have almost no pain at all...just the blood scttered on the stool and some on the tissue...as I mentioned for the last 3 days I've had no/0 blood...not even a spec and I truly thought I was doing better.

Thanks.

Lialda 3x's per daily, daily rowasas, supplments etc.
Pancolitis mod <!--IBF.ATTACHMENT_739447-->
<!-- THE POST -->


Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Post Edited (bbc) : 8/17/2008 4:47:25 PM (GMT-6)


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1198
   Posted 8/17/2008 5:06 PM (GMT -6)   
Hemmies?

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis with no Granuloma
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/17/2008 5:12 PM (GMT -6)   
I only have one small internal hemmie so I kinda doubt its from there...I also have an old fissure that acts up once in a while but I have no pain in that area at all so I'm truly stumped. Jeez, I was just totally blood free for 3 straight days since this mini flair started 3 weeks ago cry
Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 8/17/2008 6:06 PM (GMT -6)   
Seems par for the course....you're improving.

So, I'm assuming that you're having more formed stool? Less often bms?

If it isn't a the fissure, it means that the tissue is still fragile. It will probably bleed from having a bm and then pool. The blood along or in the stool will probably be just that. If it's only a bit, that's a huge thing to celebrate.

You've been on the nightly Rowasa for 3 weeks or within the 3 weeks that you upped to nightly.

Hang tough..seems it's working.

Yeah about the omega 3s...I don't recommend to use high dosages of them while bleeding.

My take, of course.
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/17/2008 9:22 PM (GMT -6)   
 
Hi Q thanks for the interest and feedback...I've addressed your questions/thoughts:
 
Seems par for the course....you're improving.
 
So it's normal to have the bleeding slow way down over the last week or so then go for the last 3 days straight w/o bleeding then start bleeding again and at the same level (stripping vs. a sopt or two) as 3 weeks ago?

So, I'm assuming that you're having more formed stool? Less often bms?

I've always had formed stool this time around just some bleeding and pain/spasms so I'm not sure its the stool causing the issue...It's just amazing that I had a significant setback in just 24hrs when I was tracking to be back in remmission.

If it isn't a the fissure, it means that the tissue is still fragile. It will probably bleed from having a bm and then pool. The blood along or in the stool will probably be just that. If it's only a bit, that's a huge thing to celebrate.

But compared to the last 3 days of having no blood and it getting better each day (up until today) I feel this was a big set back and not a reason to celebrate.


You've been on the nightly Rowasa for 3 weeks or within the 3 weeks that you upped to nightly.
Hang tough..seems it's working.

I'm not so sure it's really is working anymore as in the past/year rowasa would stop my heavy bleeding in about 24-48 hrs  and now it can't evevn handle mild bleeding and if so for only 3 days.

Yeah about the omega 3s...I don't recommend to use high dosages of them while bleeding.

I just doubled the dose as of yesterday due to a fellow UCer telling me I was only taking a third of what I should.   I also stopped the melatonin about 3 days ago even though it is a natural TNF protien inhibitor.

I even tried to cut back on starches sugars etc but they (white bread, rice, saltines etc) are what is recommended when in a flare but yet they are so bad for IBD...I beginning to think truly believe that nothing is going to help until I can get my autoimmune system to function properly again. I will also say this; I will not spend the rest of my life on more and more meds all with so/so results and many with very significant side effects...my next step is seeing a new GI doc on the 28th and I will begin my long term quest to have this diseased colon removed and go on with my life as I'm sick and tired, of being sick and tired and not being able to eat all the wonderful things that are available to us, losing weight worrying when the next flair will come, looking into the toilet after every BM etc etc...I've had ENOUGH!!.  I used to think there will be some sort of significant break through for UC/IBD in the next five years but I'm thinking it may be more like 10+ and I just don't want to spend the next 5, 10 or 15 years etc feeling poorly going in and out of remmission. I feel as UC'ers, we are blessed that surgery is #1 an option and most importantly #2 a real cure. Someone take my colon...please LOL...




Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Post Edited (bbc) : 8/17/2008 8:36:00 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 8/18/2008 1:54 AM (GMT -6)   
Low in the rectum bleeding/inflammation is very difficult to treat sometimes. Especially with formed stool going through it.

I see you well on your way to remission. Always expect the unexpected ups and downs. Hey...I have a self-inflicted cut (hair scissors) that was "closed" for 2 days ...but started bleeding yesterday. The colon doesn't heal in a few days...the lower rectum can take a while. Spotty compared to stripes...awesome.

Just a little on the toilet paper...even better. Bleeding is a way to visually see if you're improving...but it doesn't mean there's no inflammation happening.

The new doctor will hopefully take a look-see at the first appointment....

If you have pancolitis and have gotten inflammation down to just rectal flares...that's a huge celebration from my perspective.

I think expectations has a lot to do with how one deals, but HAVING to deal is so incredibly frustrating....and I truly can relate to just wanting to have a break. We usually don't only have UC to cope with.

So...how long exactly have you been on daily enemas...3 full weeks? You could consider to add a suppository in the morning/or night since you use the enemas during the day.

Have you missed any enemas?

q

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/18/2008 11:54 AM (GMT -6)   
Q,

I've been on rowasas since Dec 07 and everytime I've cut back from daily use I flair again; usually the rowasa gets me back to normal in about a week but this time around it took three weeks and I was doing great getting better each day with less and less bleeding.

3 weeks ago the blood was stripped and went to spots on the stool then gone for 3 straight days...now I'm stripping again and the rowasas are not stopping it at all. My GI doc wants me to up the lialda from 3 to 4 (the max dose) as he thinks the bleeding may be up stream of where the rowasa can go so it may not just be a rectal flair : (

A few mos ago I switched from asacol to lialda (it so much easier to take 3 pills vs 9) and 2 days after I switched I started bleeding again but the rowasas got it under control very quickly (that's what's worrying me, normally rowasa always gets me good again in a very short perios of time). So as of yesterday a.m. I went back to asacol just to see if it might change things for the better (I'll give it three days) and if not I'll go back to Lialda and increase the dosage to the max and see what happens.

I agree my flairs are no where's near as bad as they were prior to using rowasa, but since I'm still bleeding while using the rowasa daily, plus I've been keeping it in for 12 hrs + so unfortunately I'm not very optimistic : (.

Thanks again for your continued interest and advice.
Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 8/18/2008 2:09 PM (GMT -6)   
You're welcome....I find discussing musters a clearer understanding of one's situation. Yours is getting clearer by the moment.

I truly get the lessened optimism....switching to Lialda from Asacol could be part of it, or just coincidental.

You can take Lialda in a twice daily dosage...wondering if that could help. Sometimes too much 5ASA can cause bleeding....so....maybe doing a lesser dosage at one time might help?

The other thing...maybe a lower dosage of Rowasa...2g might be better?

Some can't take 5ASA, some can...some can't take a high dosage, some can.

Just offering other suggestions.

You could also try the enemas at night instead of during the day...laying quietly to that the med gets into the sigmoid or completely into the areas where it might need.

Hope you get some results...keep us posted.
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/18/2008 4:04 PM (GMT -6)   
Thanks and great suggestions...I've already switched the rowasa back to night time as of last evening.
Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


finick08
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 8/18/2008 6:32 PM (GMT -6)   
yeah im having kinda the same problems, i had abit of flare up , but i got very little urgency, and only have 1 bm in the morning and sometimes 1 at afternoon or night, and stool has blood on some days, and they are formed pretty good most days or sometimes pretty soft, and very little mucus, and i get abit of pain in in stomach, always on left hand side, any1 knows what this all means? and what i can do, Cheers. 

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/18/2008 6:34 PM (GMT -6)   
What exactly do you have and what are your meds, treatments etc?
Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 8/18/2008 8:21 PM (GMT -6)   
im currently in same boat kinda..

last 3-4 days have been good.. only going once a day. more formed bm's and no blood.
last night had one of those elvis poops that was excrutiating but it was from formed bm's passing through my tender colon.
still no blood though.
i thought i was truly into remission...
but this morning, had to run to the loo and bam! splatter, blood, diarrhea etc...
bummer!!!
im hoping its a mix of the pred tapering and the fact that formed bm's passed through my colon rather than no reemision.
i guess ill just have to see how today pans out.
im crossing my fingers!
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/18/2008 9:18 PM (GMT -6)   
Hang in there and feel free to vent...I'm praying for us all.
Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


finick08
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 8/19/2008 4:12 AM (GMT -6)   
well i got uc, i did not know there were dif types of it until i came on here, the 1st time i had that test done doc said it was pretty bad, but the last time he said my colon looked alot better, ive just reached my correct dogage of aza which is 200mg, and also on asacol 3x3 per day, and on 30mg of preds now, i dont get it cuz when i 1st had UC i had alot of urgency and going heaps of times in morning and random times in day but very little blood unless it could not be seen, and now i get very little urgency but i see blood in my bms. whats with that? dont go 2 doc untill november, but might ring him, what u guys think? Cheers.
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