uc returning

diag. with severe UC..2/09...prednisone 80mg..to start weaning would come later..asacol also,  but would later switch to lialda...much easier for me....also imurin,75mg..daily...everything pretty good...till I begin the weaning process, once it gets down to the 20mg....I'm only speaking of the pred...all else is same...we "jockey", if you will, around the weaning,  back to 2o  for extra 2 weeks..then resume weaning......alot of time seems pretty good,  however it'd flare in some way and we'd start at the 20 again...Still livable, yes...believe me I realize there are alot worse situations out there.!   Any how alot of this time I'm on imodium (immodium) or whatever, just to keep me in check, during the day,....works 80% of time...night-time I still get up 2,3-4  "small times", occassional mishap   couple nights ago slept through 2 nights in a row.All right  ?  Next morning dark blood vessell,  vein,  mucuous  looking thing    size quarter...mixed on this only stool...ever since seems to be a little more dark reddish hue to alot of my stools...not all the  time, though...so i told my gast..he starts me back on 40 pred-1 week, 30-2cd week 20 3rd week 10 4th week5mg..then for 30 days....i guess its all about experimenting......anyone out there that might help relieve my anxiety ?  I do have other normal symptoms,  headache, fatigue, sleepless,,lazy sometimes  irritability,,all those goodies too......guess I;m just searching..I'm soon to be 58 and a male if it might matter..thanks for everyones time and this forum   .....                                                                                                                                                                                                  

[TrudieC]

It is a matter of up and down and experimenting until you can get into remission.  Do all you can to ensure you are getting enough fluids and that you intake enough magnesium and potassium (bananas, potatoes, gatorade, etc.).  Being low on those can cause cramps and dehydration really makes you feel awful which could be the cause of your irritability and headaches.  Have your doctor check your iron levels as you may need to take some iron supplements which will help with the tiredness.  Try and find ways to reduce your stress.  For me it was always soaking in the bath and Earl Grey tea.  Do you have something for pain?  I took Tylenol 3's when needed and don't be afraid to ask for some Lorazepam which can help you to relax and lower anxiety.

[tod11]

thanks for info, Trudie...Your comments, although I do most, give me hope on someday, going int a more stable remission.  Some of my family members, want me to take harsher steps,  thinking it's been long enough of the up and down...My thoughts are, it's only been 12-13 months...not really that long,  for what could be some extreme steps to come...appreciate any comment...thanks again...

[TrudieC]

My son has done well on Imuran and has learned to react quickly if he feels another flare coming on to get the prednisone &/or Imuran up and catch it before it gets a foothold.  It will come with time.  

I ended up having the J-pouch surgery but not by choice.  I had had UC for 10 years (this is 17 years ago) and my bowel perforated while in the hosptial.  It has worked very well for me.  My son looked into it but his disease is not in a really good place and he can only have the surgery if he is in remission, and then when in remission he feels good so no need.  It is good to see if you can get things under control.  I didn't have a good doctor and we didn't have the options you do now when I was sick.

[ladylori24]

I too have had much success with Imuran.  But please read my post about seeing a Chiropractor as well.  I know that sounds way off base, but I have felt the MOST improvement with just this one recommendation.  A lot of people on here have had back issues that seem to be a consistant symptom of Crohn's and UC.  We don't realize how much the nerves play a part in everything our body does.  This starts with good "back" health.  I have more energy and less pain everywhere!  And that is just in the three weeks I have been seeing my chiropractor.  With Imuran I have been "controlled" but I do have occasional bleeding and sleepless nights.  (The sleepless nights went away after going to the Chiropractor)  Good luck!