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Ulcerative Colitis
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Posted 6/4/2011 3:31 PM (GMT 0)
Hi all -
OK, so... I started to see some increase in frequency and urgency and blood and put myself on cortenemas a month ago. Did them for three weeks, a week after all bleeding stopped (and I was down to about 3x a day... Canasa for the bottom, so the urgency went away....)
I tapered the cortenemas and was fine.

I've had an iffy response from Rowasa but decided that maybe I was just impatient. So I started those a few days ago, nightly. Had the predictable "more and less formed" stools in the morning. Yesterday had a feeling of rectal fullness all day. This morning, huge BM, formed, but covered with blood, blood in the toilet water, blood on the TP - ARGH!
Second BM, also formed pretty well, blood on it.

Rectal fullness sensation again.

So, once again..... a co-incidence of re-flaring and Rowasa? Or does the Rowasa not agree with me? Canasa does wonders for me, and Cortenemas have been my go-to med for decades, when flaring.

I'd also cut down the VSL from 4 a day because I'm running low until I can get a refill (duh, could call the GI and get a new prescription for the higher amount.) And.... 4 a day is hard to remember to take!

Generally I am not sensitive to foods or meds, I don't tend to get side effects, and I've just not wanted to go the SF Rowasa route because of cost (and I have a box of 90 generic Rowasas !! Hate to waste.) Guess I'll need to call the GI, get more VSL, maybe ask about the SFRowasa.

Thanks for listening!
Posted 6/4/2011 4:13 PM (GMT 0)
I'm sorry to hear you are starting to flare again. You have a lot on your plate right now so maybe the stress is aggravating things. I hope you get it cleared up quickly and you start to feel better soon. You may indeed be sensitive to something in the Rowasa and you won't know unless you try the SF. If you can tolerate the SF's then you will have your answer.
Posted 6/4/2011 10:38 PM (GMT 0)
songlady, I am sorry you're having symptoms. Maybe you could use cortenemas for a couple weeks again to get back to normal? It doesn't seem like you have a good reaction to Rowasa, I haven't been using them lately either... I have had bad days, even seen blood and had a normal day following. I am not sure why some days are bad and others good. I do know gassy foods cause me all sorts of problems.

I don't take probiotics at all anymore. I wish they helped me but I don't notice a difference in my condition regardless of whether I take them. It's wonderful that they help you so much.
Posted 6/4/2011 11:48 PM (GMT 0)
songlady,

so sorry about your flare.

I hope you find out if the Rowasa is the culprit.

Have you been under particular stress lately?

Posted 6/5/2011 12:17 AM (GMT 0)
Hmmm about the Rowasa. Since you are OK with Asacol I wonder if the Sulfa Free Rowasa would be better for you. Getting the mesalamine lower would be good but not if it's causing problems. Just a thought.
Posted 6/5/2011 12:38 AM (GMT 0)
Thanks, friends.
I guess I'll go back to the steroid enemas, and call the GI Monday to see if he'll prescribed SFRowasa. He might want to see me; I've only been with him 1 1/2 years.
I've had HUGE stress from October to about.... a a few weeks ago (and some still.....) but it's so much less this past month or so, I can't think that would be the cause of this morning's issues.....
Unless.... an article comes to mind, from the NYTimes about 10 years ago.... there was a tiny article, the gist of which was "UC flares tend to follow stress by 6 months." If that is true, I'm on target!

What a confusing disease. I had these two bloody poops this morning, the first blood in a month, and then spent the day at the town's street fair. I walked miles, stood on my feet for hours, had street vendor food..... and no ill effects (no poops since the morning two.)

I used a Canasa after the two morning poops. They help so much, I wonder if SF Rowasa might be the answer.

I feel as if I should say, "Hi, I've been bleeding from this disease on and off only 28 years... someone help me understand it?!"
Posted 6/6/2011 12:13 AM (GMT 0)
I used Rowasa & later its generic successfully for ca. 14 yrs. However, when I started into a flare in March, 2009 & added the generic to my nightly regimen, it quickly made me feel worse. I felt like a wound opened in my left side! Terrible. My gastro told me to stop using it immediately, and asked me to come in for a flex sig. That showed ulceration in sigmoid colon + lesser inflammation the rest of the way down. At that point the sulfite-free Rowasa was a couple months away from market, but my gastro never brought up the mesalamine enema subject again. Since this doc is very experienced with IBD treatment, I assume that means that we can top out of Rowasa, and I did. It could be your problem because you're also a veteran user, but your gastro may have a different interpretation ... In any case, I hope you'll be on the mend ASAP. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/10/2011 1:46 AM (GMT 0)
Update:
I went back on cortenemas nightly. I saw a little blood on the first stool the next morning and have seen none since. I've been having about 2 bms a day.... sometimes 3 or 4 depending on food. (That's about as good as it gets for me with my scarred colon.)
One other thing about that morning: I was in the shoer when the Urge hit me, and.... I held on until I got out and dried off. I have noticed in the past that when my colon is at all fragile, if I delay a trip to the toilet, I'll bleed more - the tension of holding on, I guess. Maybe that's all that was?!

Stress, lol, yeah.... I had a funeral today, a wedding rehearsal and wedding the next two days and I'm in - and the organizer of - a music recital on Sunday. So... I think I'll stay on the steroid enemas until Monday and call the GI (absolutely no chance to do that this week.)
I've tried to stay on 3 VSL a day also.... the more I do of that, the more it helps me.
Old Hat, my former GI's office had heard my tales about Rowasa and had "x"ed off Rowasa in my chart.....but I wanted to try it again to make sure. And the thing is, the Canasa seems to help me a great deal! That's what makes so sense to me.

Ho well. Have a good weekend, all...... :-)
Posted 6/10/2011 2:51 AM (GMT 0)
songlady, it's wonderful to hear you're doing so much better :)
Posted 6/10/2011 12:07 PM (GMT 0)
Hi songlady.  Sorry it's so much up and down, how frustrating!!  But it sounds like you are on the road to improvement for your busy weekend anyway.

Have a good one!! :)

Posted 6/10/2011 12:36 PM (GMT 0)
Hi Songlady,
This disease is so frustrating. I hope improvement will keep coming your way...you always have such good ideas for everyone!! Keep us posted.
B
Posted 6/11/2011 1:17 AM (GMT 0)
Maybe your sigmoid colon's mucosa has thinned to the point that Rowasa irritates it. Canasa generally doesn't disperse that far up. I just throw this out because my gastro has commented in the past that my sigmoid is usually the site of the worst inflammation when I flare. I'm pretty sure that's where the liquid enemas' squirt ends, too-- because there's a bend to that section of colon. It kind of supports that theory of UC development concerning a weakened mucosal barrier. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/11/2011 1:50 AM (GMT 0)
Yes, I think you may have it nailed, Old Hat. For years I'd have this one irritated area right where the enemas stopped ......

Sigh, it's always something, isn't it?!
Posted 6/12/2011 1:43 AM (GMT 0)
Yes, indeed. (Alas!) That's the nature of the beast we confront. My gastro learned to think in terms of alternative treatment strategies, recognizing that a particular IBD med can suddenly quit working for one reason or another. It's not our "fault" when that happens! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
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