Dakota Girl-- How are you feeling?

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Old Hat
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Date Joined Feb 2007
Total Posts : 5151
   Posted 4/17/2008 10:57 AM (GMT -7)   
Time to update us. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 4/17/2008 10:59 AM (GMT -7)   
LOL! I just posted a response on my other thread. We must be in synch ;-) I haven't been on much because of the fatigue...
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Cortifoam, Aciphex, Forvia, and Pro-Bio, Calcium, Vitamin D
 
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Old Hat
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Date Joined Feb 2007
Total Posts : 5151
   Posted 4/17/2008 11:06 AM (GMT -7)   
Oh, yeah, we want you to take it easy. Flagyl is an invention of the devil-- my biased opinion. Be sure to drink plenty of water to keep flushing it out of your body. I got the worst metallic taste from it after ca. 3-4 days, yecccchhhhh! / Old Hat

dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 4/17/2008 11:08 AM (GMT -7)   
My nose sure thinks flagyl from the devil. That SMELL just turns me off. It's beyond offensive!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Cortifoam, Aciphex, Forvia, and Pro-Bio, Calcium, Vitamin D
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
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Date Joined Feb 2007
Total Posts : 5151
   Posted 4/21/2008 9:01 AM (GMT -7)   
Following your thread on Ambien-- just want to comment on sleep issues. (1) The need to pee ca. 4-5 AM can be very frustrating! It's a side effect of high-dose UC anti-inflammatories. I get it on high-dose 5-ASAs only & it drives me bananas to be in that situation-- so you have my utmost sympathy. I've found it helpful to avoid caffeine, chocolate anything, & soup after 5 PM, plus (obviously) any food that increases thirst. (2) Best to avoid additional drugs as much as possible so try progressive relaxation exercises when you can't fall asleep, or read something boring, kind of dry. (3) Flagyl made me more agitated than Prednisone; it may be contributing to your sleep problem, too. Does your gastro have an exit strategy for it? How is your flare doing?  Spring is a precarious time for us UCers, I'm convinced, though I love the blossoms & longer days! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 4/21/2008 10:26 AM (GMT -7)   
The peeing issue can be a side effect of the 5ASAs??? Wow. I never knew. Which I don't know a lot - and obviously with the Ambien-food issue, lots of others don't know to tell either...

I've tried my usual before sleep tricks. Visualization works well - think beach, hammock, slight breeze - ah, so relaxing. It doesn't get me anywhere right now - sob!

I believe my last dose of Flagyl (stinky stuff) is tomorrow night. I'm interested to see if that helps the restless, nervous, energy. Another side effect of another drug that I was not informed about...

The flare is still there. I'm still going 6-7 times a day. Usually three between 3-7AM, and three between 6-10PM with an occasional daytime movement. Seeing a bit of blood yet - which makes me nervous. I know some must be from a fissure/hemi (have yet to look) because it shows as a "spot" on the TP. But there still is some mixed in with stool... Not every time though :) Which makes me think internal hemis... BTW - does anyone know if the blood from hemis clots and passes??? Or is it always "fluid"?

Spring is ROUGH! But I love the greens, flowers, etc (not the bugs) and cooler weather! I'm not looking forward to my first SE TX summer...
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
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Date Joined Feb 2007
Total Posts : 5151
   Posted 4/21/2008 7:18 PM (GMT -7)   
Yep, the 5-ASAs in high doses can definitely contribute to the wee hours peeing issue. I slept soundly on Pred (40 mg daily to start) or Cortenemas! RE Flagyl affecting CNS: I made a trip to ER on a Sunday because of it-- gave me the shakes off & on. When I described that to the triage nurse she asked: "Didn't Dr. C. (my then-gastro) tell you that Flagyl can give patients ups and downs?" (Certainly NOT!) As I recall from last yrs' threads, KitKat Baker also went to the ER due to Flagyl. So I'm glad you're soon to get off it, Dg! / Old Hat --- RE SE summer: heat/humidity combo can blow NE June-August, alas! Like having an oven door open on your face!

Post Edited (Old Hat) : 4/21/2008 8:24:14 PM (GMT-6)


dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 4/25/2008 6:44 AM (GMT -7)   
Just thought I'd update, in case anyone was wondering. The last few days have each been a tiny bit better than the last - which I am SO happy about! I'm still only getting about seven hours of sleep a night - but two nights in a row so far! The major space case feeling has gone - with the end of the Flagyl. Still experiencing a "disconnect" but my guess is lack of sleep combined with pred. I'd really like to have my normal functioning brain back!

Yesterday was a good day bm-wise. Today is my scheduled taper from 40mg to 30mg of pred. I am a bit anxious about it, but trying to stay calm and see things in perspective.

Even more of the moon face has struck - and that's disappointing. Trying to drink lots of water and juice to keep hydrated. I've decided that I'd rather get up to pee than deal with the really thick mucous I produce (which seems to choke and gag me at night).

I'm proclaiming today a good day for several reasons. It's Friday :) I have work to do, but not an overload. Tomorrow is the company crawfish boil and I enjoy most of my coworkers and their families. Sunday we're test driving ski boats - we've been saving and waiting for years and will finally be that much closer to freedom and relaxation on the water.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
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Date Joined Feb 2007
Total Posts : 5151
   Posted 4/25/2008 10:51 AM (GMT -7)   
Good news to be off Flagyl! Hope you have a fun weekend! When you get back here for next update, please explain why you're on Asacol. Due to right colon inflammation? (Because it's supposed to start dissolving in terminal ileum.) / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 4/25/2008 12:01 PM (GMT -7)   
Glad you are feeling better! Congrats on the boat. How cool!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Co-Moderator UC Forum


Beth75
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Date Joined Jul 2007
Total Posts : 2148
   Posted 4/25/2008 1:48 PM (GMT -7)   
that is great that you are feeling better!!! Have a great weekend.

Also I was drinking juice fortified w/postassium and it really helped my cramps. Langers cranberry/raspberry.........yummy!
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 20mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 5/9/2008 7:54 PM (GMT -7)   
Hi all. Thought I'd chime in with an update and some questions...

Dropped to 20mg of pred on Monday. Saw the doctor for a follow up on Tuesday. Monday and Tuesday I was seriously tired from the pred drop. I'm starting to actually be able to sleep on my own again, for which I am very happy. The 10mg Ambien was too much, I didn't wake up in time a couple of times. Started cutting the tabs in half (5mg) and that was helping to take the edge off enough to sleep. I'm using the Ambien every other night now, as I was advised not to quit it cold turkey after use of more than two weeks.

GERD has been acting up. I'm burping up food HOURS after eating it - at least three if not more like seven hours. Told the doc - he suspected infection of throat/stomach from the combo of pred and Imuran and prescribed nystatin oral serum, which tastes awful. I'm supposed to use this four times a day for ten days - swish in mouth, swallow, don't eat or drink for 5-10 minutes. Four times a day really isn't going to happen - three is most likely. I'm wondering how long it will take to see results if this is going to work!?!?!

Overall parts of me are feeling better - I feel a little "loose" at times. Having approx 4 bms per day. Definitely have some internal hemi(s).

Each day I feel a bit better than the last :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
30mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

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