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Normal BMs - why do I still feel like crap??

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Ulcerative Colitis
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Posted 5/21/2012 4:06 PM (GMT 0)

I’m so confused – and frustrated – with this UC I can barely take it anymore!  Ever since last Wednesday I have had completely normal BMs.  Normal size (not thin like that had been for months), twice a day, formed.  I was pretty gassy but other than that felt pretty good and figured the 20mg of Prednisone was finally helping.  Then Saturday night I just felt like I had been hit by a truck!  My whole body ached, my joints and muscles were sore, I was soooooo tired, and Sunday my stomach started feeling upset (still normal BMs though).  I thought I may have noticed some blood mixed in with the stool but hard to tell as I had my period last week.  Also hard to tell as the enema tends to put a coating on the stool sometimes.  But definitely still formed stool.  This morning it was a little less ‘normal’ but still formed just what looked like a lot of leftover enema and ‘maybe’ some blood (still hard to tell as my period is still spotting a bit).

 

I haven’t changed a single thing – didn’t taper the Prednisone, been on Imuran for a week, still 2 enemas a day, still the Colazal.  The only thing that was “different” from was my period last week – which was totally screwed up from the Prednisone. It didn’t start till Thursday (supposed to start the previous Sunday), barely had anything then Saturday it went into full force. Started back on the Yasmin Sunday and its still spotting a bit but the cramping stopped and hormones feel like they are evening out again.

 

I’m still feeling soooo tired today, and yesterday had a burning sensation all up my left site. To me that always ‘feels’ like my colon is bleeding inside.  Could the Prednisone just decide to stop working after I was seemingly ‘normal’ for almost a week?  What on earth triggered it to get all flared up again?  Just looking for suggestions. I’m just so sick of getting all excited over normal, formed BMs (what a charmed life we lead when that is the culmination of excitement!) – only to feel like crap again a week later for no apparent reason.  I just really hope this Imuran ends up working as I cannot take the UC anymore – 6 months of being sick, while I know isn’t long compared to so many people, is just wearing down on me to where I can’t take it anymore L

Posted 5/21/2012 4:24 PM (GMT 0)
Do you have any underlying yeast issues? Do you take a good probiotic? How's your iron, you DHEA levels and your thyroid? I was so tired too, still am a little, found I was deficient in DHEA (look that up, good info on energy levels) and my iron. I also take Vit B-bi lingual. I hope you feel better.
Posted 5/21/2012 4:29 PM (GMT 0)
Having your period itself can sometimes screw everything up. Some months for me it does for me and others it doesn't so much. Just a thought but if things keep backsliding you may need to up the pred. Looks like your doing everything right though.
Posted 5/21/2012 4:38 PM (GMT 0)
I was wondering if my period put me back into the flare after it was starting to heal.  So frustrating!  Many years ago (over 10 years ago) I had a recurring flare that would never completely go away. It would start to heal, then I'd have my period and bam! it would be back again.  Finally my doctor suggested taking the birth control pills 2 months in a row and I am positive that is one thing that helped get me into the 10 year remission I had. I take them 3 packs in a row now so won't have to worry about my period again for a few months at least.  But the prednisone has my hormones so screwed up I'm not sure it matters at this point.  My doc is out till thursday although there is a chance he'll still call me back - she left a message for him. So we'll see if what he says - I'm guessing he'll say to up the Prednisone again although for now they (the nurse) told me to taper tomorrow to 15mg.

therearemiracles - I do take an iron supplement daily. I've had my thyroid tested quite a few times (due to hair loss) and it always seems to come out normal. I am going in for the usual CBC and other blood tests this week for my Imuran (first blood test after starting a week ago), so we'll see what that says. I'm sure my WBC will be screwed up from the Prednisone though anyway.  I do also take a probiotic - twice a day. I can't remember the brand - I get it at Walgreens and it might be Nature's Bounty or something like that. I've been taking it for years and years.  I did have my ferritn tested a few weeks ago but never saw the results - maybe I'll contact my doc and see what it was. It's been awhile since I had my DHEA levels checked (again had it checked before for hair loss). 

Posted 5/21/2012 9:41 PM (GMT 0)
My period screws with things but, once it's over, everything goes back to normal. Of all of the birth controls that I have tried, Nuvaring seems to have the best results with my UC.
Posted 5/21/2012 9:47 PM (GMT 0)
Doc said to stay on the 20mg of Prednisone, stop the Imuran, and call him Friday afternoon to figure out what next. I can't believe he actually responds to patients even when he's not in the office.  I might have finally found a GI I can stick with!

Not jazzed about staying on the Prednisone but at this point I just want to feel better and I don't care what it takes to make that happen!

My period (and some cramps) seem to have mysteriously returned this afternoon. I guess I'll be calling the ob/gyn tomorrow. Normally I'd say 'whatever' but since I had the early stages of endocervical cancer last Oct I'd rather be safe than take any chances.

Thanks for the replies, getting advice from other people who had similar experiences always helps!

Posted 5/22/2012 3:07 PM (GMT 0)
Have patience :-) !

It took long time to get ill, and it will take long time to get well. Think about it: you have been having for long time inflammated intestines, do you really have all the nutrition stored up in your body to feel healthy already? I mean any person with deficiencies of either minerals or vitamins or anything else vital is often tired and feeling down.

Also, as you take Prednisone, you might have good BM without actually being in remission....

EDIT: I have soon had a month of normal BM, and still feeling very tired. Nowadays I have at least some strength to take some walks... Things are very slowly getting better after a bad flare.

Post Edited (engblom) : 5/22/2012 9:14:32 AM (GMT-6)

Posted 5/22/2012 10:41 PM (GMT 0)
I've had similar issues in the last year. Have been in and out of mini-flares. Never getting back to full 100% remission. I get about 90-95%. My period has always been a huge culprit in my UC issues. Was originallly put on a bc where I'd only have 4 periods a year. That was the best. Kept hormones in check. little to no flares for several years during that time. Developed a blood clot due to the bc therefore was taken off it. Put on a progesterone only bc. In the last year or 2 since then, things haven't been 100%. Going to see my dr this week to try to figure it out. Some doctors don't look at the correlation between the hormones and UC. You need to insist they look into it and work out a solution for you. Best of luck.
Posted 5/23/2012 2:43 AM (GMT 0)
While tapering on pred my periods have been fierce and relentless in the first few days. My UC seems to get worse but as soon as it ends my symptoms get better. I am on 8mg now but I just started Remicade. The blood disappeared literally overnight after my first infusion. My BMs are not quite formed but it may take a few more infusions before things settle down and I can completely get off the pred.

Hopefully as you taper the pred your body will adjust and things will not be so up and down. Good luck to you!
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