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DOING OK DURING DAY & THEN BLOODY D' ALL NIGHT AND IN AM???

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Ulcerative Colitis
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Posted 4/13/2012 7:37 PM (GMT 0)
 is anyone else feel after the first 4 hellish d's of the morning ok-ISH and then night rolls around and the thick D' of the day goes to pure bloody liquid & the cramps pick up??? i take 40mg of predisone at 7 am and  from about 2 am - 9 am i go 6 x at least and there the worst ones? what gives ?? if i can get a break from pooping like i do in the day i feel i could make a turn towards healing . what could help ?

thanks everyone for any input

Posted 4/13/2012 7:38 PM (GMT 0)
ps almost no blood either during any day bms but not for the late night and morning
Posted 4/13/2012 9:05 PM (GMT 0)
FOR 26 DAYS
Posted 4/13/2012 9:20 PM (GMT 0)
Shelia, I am right there with you....I have been on 40mgs for 25days, and have bloody D in the morning....normal stools during the day with less urgency, then get up 2-3 times a night for more D...not sure what will give, but during the day I feel, "normal"
Posted 4/13/2012 9:29 PM (GMT 0)
YEAH WHAT THE HECK!! WHAT CAN WE DO ??? I FEEL AHH IMPROVING IMPROVING AND THEN BAM ITS ALL DOWN THE TOILET ...LITERALLY . ITS LIKE TAKING 1 STEP FORWARD 3 BACK!! THERE HAS GOT TO BE SOMETHING TO THIS??!  glad i am not the only one! now we just need an answer
Posted 4/13/2012 10:56 PM (GMT 0)
You know I'm similar to you too. I have more formed in the morning but it's like 3 to 5x (with red blood) then a huge break during the day. Haven't gone since 10am..it's now 7pm. Ate dinner..nothing...but in a little while I will probably pass liquidy brownish/pink stuff a few x before bed. Some nights I get up to do more. I was on 30 mg for like 8 days and then 40mg for 15 days, now on 35mg. GI wanted to start taper but I"m not sure about it.

Sheilia I sent you an email too.

I am so sick and tired of this, right there with you. I pray better days ahead soon.
Posted 4/13/2012 10:57 PM (GMT 0)
yeah, i'm starting imuran next, I have been on the prednisone train for a year, and I am ready to jump off
Posted 4/13/2012 11:01 PM (GMT 0)
nightside of eden

when are you starting it? did you do the testing already to see if you can tolerate it. that enzyme test? what other things have you tried? i pray you are well soon.
Posted 4/14/2012 12:10 AM (GMT 0)
NIGHTSIDE,
DID PREDISONE EVER BRING YOU CLOSE TO REMISSION IN THAT YEAR?
WHY are bodies good on the pred in the day ? what is the cause!
Posted 4/14/2012 12:18 AM (GMT 0)
no, I haven't done the enzyme yet. I have an appt on the 21st, and the doc said that we are going to do that if we can't get this under control. The only things I haven't tried are antibiotics, and remicade at a stronger dose. I was on remicade at the lowest does 2 years ago to control terrible joint inflammation, but it didn't do much too much for my UC other than for a couple of weeks of remission. Other than that I have been on sulfasalazine, endocort, asacol, rowasa, canasa, lialda, hyrocortisone enemas/suppositories, prednisone, remicade lowest dose, and I think that is it!!! that seems like a lot after all these years.
Posted 4/14/2012 12:22 AM (GMT 0)
i have wondered about antibiotics... it would be worth a try
Posted 4/14/2012 12:57 AM (GMT 0)
When I was flaring it was always worse in the morning and after 4pm. During the hours between 11am and 4pm I was somewhat ok and then all hell would break loose. I probably used to visit the bathroom 20 to 30x in the evening hours and right thru the night. I couldn't live like that anymore so I have a j pouch now.
Posted 4/14/2012 2:57 AM (GMT 0)
sounds like in your case it would be profitable to split the pred am and pm... for what its wirth, when one is on IV steroids they change the IV bag every so many hours, night and day- its not like they give it all in the day... So I never understood how one is exoected to heal if at night the cortisol level is allowed to plummet- at least while one is actively bleading.
Posted 4/14/2012 4:19 AM (GMT 0)
THATS EXACTLY WHAT I WAS THINKING!!! ALTHOUGH I HAVE SPLIT IT BEFORE , HELP SOME , BUT I COULD TRY A GREAT ER SPLIT ... PLUS NOW WHEN I TAKE IT ALL AT ONCE MY BLOOD SUGAR GOES UP AND STAYS UP ALL DAY - CAUSING ITS OWN CRAPPY SYMPTOMS :( SO I AM GONNA SPLIT AGAIN AND STICK IT OUT. MAKES SENSE OF THE "SIDE EFFECTS " OF A CORTISOL LEVEL PLUMMET, TO CAUSE MORE HARM THAN GOOD AND THEY SAY AT PHARMECY AT GI OFFICE TO NOT TAKE AT NIGHT BECASUE OF ITS INSOMNIAC EFFECTS , BUT WHAT DOES IT MATTER IF I AM UP EVERY HOUR IN THE NIGHT ANYWAY RUNNING TO BATHROOM!?!

THANKS PROBITIC :)
Posted 4/14/2012 11:04 AM (GMT 0)
I have the same exact issue! I had a really bad flare a few weeks ago and now I've been on 40mg of pred for about 10 days. But as you said, lots of action in the morning and every 2-3 hours at night. Then during the day its not bad at all. Hopefully a little longer on the pred will clear this up. It's a real pain in the ass.
Posted 4/14/2012 2:25 PM (GMT 0)
WHAT THE HECK !?!?! WHY ARENT THE DR'S ADDRESSING THIS!??!
Posted 4/14/2012 3:56 PM (GMT 0)
Sheilasuperstar,

Are you using any rectal meds like hycort, cortenema or cortifoam to help with the bleeding and urgency?

Posted 4/14/2012 4:46 PM (GMT 0)
Sheila,

Yes, pred put me into remission three times over the year, but within 3 weeks of being off of it...it came back
Posted 4/14/2012 7:59 PM (GMT 0)
PUFFED RICE- MY GI WILL NOT , ADAMENTLY, PERSCRIBE ME RECTAL MEDS .... SERIOUSLY THIS HAS BEEN AN ISSUE BETWEEN HIM AND I . HE SAYS : " THERE IS NO NEED FOR THE RECTAL STERIODS , WITH 40MG OF ORAL STERIODS IN YOUR BLOOD "... I SAY BULLcrap

AND NIGHTSIDE.... what is the purpose of keeping on them ? for only 3weeks remission? i am trying to decide what to do for future flare?
Posted 4/14/2012 9:24 PM (GMT 0)
Hi,
I was where you are now a month ago. about 1 month ago I read about healing clays. First I tried Living clay for 2 weeks and had some improvement. Then I took Terramin clay after reading that it was extensively researched by many scientific institutes, including NASA and it was used for many health problems, including digestive issues. It took only 4 days to make a believer out of me! Nothing worked as fast as Terramin clay. I wish I heard about it 5 years ago when I was diagnosed with ulcerative colitis. After my very positive experience with Terramin clay I begun a research about all healing clays and which is the best, the strongest for digestive disorders. this how I discovered Pascalite clay. If Terramin calms the body, supplies it with bio-available colloidal minerals, balances Ph in the body, Pascalite has very strong antibacterial and pain relieving properties. I have read multiple testimonials about how Pascalite kills and neutralizes food poisoning caused by E-coli, salmonella... in minutes.
I do not sell any of them. I just want people to know about these amazing clays!
Posted 4/15/2012 1:52 AM (GMT 0)
turn thank u look4cure , i'll check in to researching clays, i have NEVER heard of that course of treatment at all !
Posted 4/15/2012 2:08 AM (GMT 0)
Sheilasuperstar, first of all I love your name!
Thanks to these clays I am in remission right now and it happened very fast. I took Terramin first but if you are really feeling bad and in a lot of pain, take Pascalite clay.
Read about the research done on Terramin, just type Terramin clay research. In my personal experience Pascalite has a stronger pain relieving and antibacterial abilities.
If I can help you in any way, please, let me know.
Posted 4/15/2012 6:25 AM (GMT 0)
The only thing i think of is that pednisone is used by the body as an alternative to its naturally produced cortisol. And cortisol levels drop after about 5-7pm; same with prednisone.

I used to get a break from the anxiety/depression mood swings after about 7pm when i was on the prednisone. So yeh probably because it was also dropping low after that time.

So: Split the dose.
Posted 4/15/2012 11:03 AM (GMT 0)
Hi sheilasuperstar

So sorry to hear your having a bad time. From what I have read here, you want to get another opinion (new doc)

I hope your getting your blood work done or are taking Iron supplements.

Have you tried VSL#3

Good Luck
Posted 4/15/2012 8:28 PM (GMT 0)
Shelia,

The main reason to stay on them was because the doc thought we were tappering to early, so each time has been a longer taper. Obviously, this isn't working so imuran is next...Doc wanted to avoid imuran, but can't now
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