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Bizzarro Flare Continues

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Ulcerative Colitis
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Posted 8/21/2008 6:47 PM (GMT 0)
I've been in a very wierd flare for a month now started off w/ moderate pain + streaking of bright red blood on stool and when I increased rowasa it tappered to a few dots of blood then none at all for 3 days straight, then streaking again w/ pain followed by 2 straight days (yesterday and the day before) of no blood, and today lots of streaking and quite a bit of blood on the tissue with some mucous. I've been following the bland diet etc and today I was forced to increase my lialda from 3 to 4 (the max dose)...I'm kinda depressed because I never wanted to be on the max dose period. I have moderate pain and my stomach is making all the wrong noises lol. This has been the strangest flair I've ever had...what the heck is going on?

BTW, It's not a hemmie etc or diet or anything else...it's from my UC but when I flare itusually starts small gets to very bad D, mucous and blood then slowly gets better...this time around there has never been ay D (always formed stool) just blood that comes and goes almost every other day or so with moderate pain...

Posted 8/21/2008 7:09 PM (GMT 0)
Sounds as though you're on the mend...still on the nightly enemas?

Regarding increasing the Lialda...it's not forever. Think of it as increasing to treat..decreasing once you feel better.

q
Posted 8/21/2008 7:17 PM (GMT 0)
Q,

Wow so you still think I'm getting better even with the bleeding getting so much worse today?

True about the lialda increase...I just hope it works.

Thanks
Posted 8/21/2008 7:47 PM (GMT 0)
are you on nightly enemas....
q
Posted 8/21/2008 7:53 PM (GMT 0)
Yes.

Do you really still think I'm improving?

Why the drastic changes in bleeding every 2-3 days or so without any changes to my diet lifestyle etc?? Never gone through a flair like this before...kinda like it half under control (no D) and half not...

Posted 8/21/2008 8:51 PM (GMT 0)
how long on the nightly enemas?

For some, their inflammation is a constant that fluctuates and eventually becomes what's called refractive or resistant to any meds or improvement.

The no diarrhea is a good part....so, that's what has me thinking that enemas would be your best friend.

If 5ASA meds possibly aren't...meaning you get worse while using them and you might have to switch to possibly the steroid enemas.

It's frustrating...bigtime.

quincy
Posted 8/21/2008 10:01 PM (GMT 0)
The last month I've been using rowasa nightly like clockwork...usually the rowasas work very well for me (only been using them for about a year and a half) but this time they are having trouble with getting the bleeding under control and that's why my GI uped the lialda to the max dose of 4 per day...HOPEFULLY that in combo withcontinued rowasa does the trick...my GI doc said rowasa usaully does what it can by the 4 or 5th day to a week or two, so by now (a month later) it will have done all it can.
Posted 8/22/2008 6:11 AM (GMT 0)
Hi..well, I vehemently disagree about the Rowasa (or Salofalk which I use) seeing all it can do after 5 days. I say give it a few months for sure.

Regarding exercise...have you eased up on that? If on days you don't strenuously exercise...have you noticed a difference?

Forgot to ask...are you male or female?

What probiotic are you taking and how many?

quincy
Posted 8/22/2008 3:51 PM (GMT 0)
Q

According to the manufacuter of Rowasa (I've recently had the pleasure of personally speaking to their Medical Director) clinical studies have shown most improvements of bleeding are seen within the first week (4-5 days)...My GI doc certainly is an advocate of a maintenance dosage but he also agrees that the biggest change (if it works) will be seen in the first 4-5 days of treatment and not to expect more of an improvement unless you up the doseage/frequency/retain the product longer.

Excercise is very important to me and I did ease up but I ended up bleeding more (yesterday). This a.m. there was very little blood clinging on to some mucous on only one piece of stool. I swim and go on the treadmill but my treadmill is limited to a 4.3 mph brisk walk...no running or jogging.

I am a male and I take this as a probiotic: http://www.natren.com/healthy_trinity.asp It's supposed to be a very high quality probiotoc.

Thanks
Posted 8/22/2008 4:54 PM (GMT 0)
hm, interesting about the Rowasa....but improvement and all that it can do are two different things. Personally, I think it can set up patients for a sense of disappointment.

I guess my "ignorance" is what's served me well....for my doctor persevered with the use of the term "be patient".

Yes, the enemas gave me improvement within the first week. Improvement is subjective. For some, it has to be gone, for others, it's not as bad.

So, hence my perspective is skewed by something that has served me well without high expectations. It's coming on 20 years of using the meds, and it's been a constant of the oral med, increased once in all the years...plus increase/decrease of rectal meds.

But...in saying allllll that, I don't have pancolitis. But, my UC has never been as bad as the first 2 - 3 years while learning how to use the meds effectively and early, early, early.....from that, my inflammation is only about 2 inches and that's the reward I've reaped.

Let me add that my diet hasn't really changed....and I do have my cake and eat it too....but it is balanced.

Here's my take.....if the 5ASA meds aren't working after a FAIR trial, then you add a rectal steroid med (foam) in the morning as a booster and taper off that to continue wih the 5ASA.

If eventually you realise that 5ASA isn't for you...then switch to the steroid enemas.

Your expectations and what the med can do and the possible side effects may not be what you want them to be.....
Eventually, you may have to get to the point of immunosuppressants...the work for some, they don't for others. It's a wait and see.

Everything comes with risks, to me, the 5ASA meds are still the lowest for me, but they do cause problems for others. If you have no problems with them, then I suggest you give them a fair try. If you think the 4g is too much, then do the 2g or alternate with them.

When was your last c-scope? Has the doc taken a look-see lately?

I can't blame monthly cycles in your situation.

It's good exercise is working for you.....more to calm than overstress is what I see as good during flares.

My take on it....

Keep up the enemas at least for a while...to me you're improving if you're not as bad as before...but you do have some options.

quincy



Su
Posted 8/22/2008 5:48 PM (GMT 0)
Thanks Q... I've been doing alot of experimenting to see what nay be causing this weird bleeding on Monday and nothing on Tuesday stuff and will post my findings once they're verifyed.
Posted 8/23/2008 8:35 AM (GMT 0)
Looking forward to it.
q
Posted 8/23/2008 5:28 PM (GMT 0)
hi, has your GI said it's your UC? usually when the blood is bright red it means it's coming from somewhere more local intead of deeper like the intestine, have you been examined at all? there could be a tear somewhere maybe?? xx keep smiling! tongue
Posted 8/24/2008 4:58 AM (GMT 0)
Hi Lil lian,

I 've had two colonoscopies within the lsat 3 years...I have pancolitis so perhaps the rectal part may not a happy camper. I am feeling better thankfully, just wish this stupid bleeding would go away completely.
Posted 8/24/2008 5:21 AM (GMT 0)
Hey BBC,

How weird we started this little flare journey at the same time and how weird we are both experiencing ups and downs along the way. I'm not bleeding anymore (knock on wood!!) but the urgency really comes and goes.

I'm down to 20 pred, 3x3 asacol, cortifoam at night and canasa in the am. Of course I blew out the canasa about 1/2 hour after it went it. The cortifoam seems to stay in there at night for about 5 - 7 hours.

It still hurts when I try to poop sometimes, but more like a pressure sorta pain, not the weird pain that I was having before. I had an extremely stressful day yesterday so I think I am paying for it gutwise today.

This sounds sorta weird, but have you tried desitin ointment after you wipe? Also, have you tried KY on the tip of the rowasa tube? If I don't use it on the cortifoam tube, I bleed. I think everything is still pretty irritated and sometimes for me that irritated tissue bleeds. This sucks. I am so ready to be done with this flare! (or flare-ette or whatever you want to call it)
Posted 8/24/2008 3:14 PM (GMT 0)
hmm...is a very weird one isn't it! if your feeling well also even though it's alot of bleeding it's prob not from deep inside. maybe your insides need some TLC i'd take the advice of NMcP.....see how you get on. good luck and let us all know how your getting on! tongue xxx
Posted 8/24/2008 3:35 PM (GMT 0)
I over atethe past 2 days and I had a GIANT poo this am with a little blood beforehand (so much for that no more bleeding thing). I think I need to pare my meals down to small ones and not go crazy. I also need to stick to kinder foods during flares. Other than that, I feel fine.

I keep forgetting that it takes a while for a flare to heal. Just because symptoms are decreasing doesn't mean that have totally gone away.

No one seems to be worried about this little flare, but dang it is ANNOYING and inconvenient as hell!
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