I have a question... Would appreicate some feeback

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Kobrocki
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 3/8/2009 11:58 AM (GMT -6)   
Hello,
I haven't been on here for awhile because I have been feeling so good! When I was diagnosed with my UC it was around spring time of 2007, When I had my first flare it was Spring time of 08. Now spring of 09 is coming around and Im a little scared. The only time I see blood in my stool is right before I become really ill and go into the hospital. Lately I have been seeing the blood back in my stool. I feel ok just tired but whats new? Also I have some pain, but not too bad. I am only having 2 bms a day so I dont know whether I should be worried or if I am on the verge of me yearly flare?

Another question, I am on Remicade every 8 weeks and if I have a flare, does that automatically mean surgery? Or can they calm the flare? Just curious because last flare I wasn't responding to the normal treatment and thats why I got on Remicade..


Thanks so much for any advice/help and feedback. I am trying not to stress and worry because we all know thats no good!!! Thanks again
Life is not measured by the amount of breaths we take, but by the moments that take our breath away.


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/8/2009 12:30 PM (GMT -6)   

I'm sorry to hear you may be going into a flare...not fun. 

Surgery is normally an option once Remicade has failed all together.  If you're going into a flare, they may try you on a steroid to try getting it under control.  What form of UC do you have?  I had pancolitis and was limited to certain forms of meds, meaning the rectal ones.  However, there are so many people on here that have such wonderful success with them for their conditions.

Your GI may also try bumbing up your infusions to every 6 weeks to see if that makes a difference...you could always ask.

How do you feel after your infusions?  I only had 5, as I felt good the day of and rapidly became just as sick as I was before the treatment. 

Keep us posted regarding advice you received from you GI!  I'm really curious how you're going to be treated, if you are going into a flare.  : ) 

smurf
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/8/2009 12:31 PM (GMT -6)   
Are you on anything else besides the Remicade?  I find that whenever I am just not feeling right I start to use Canasa suppositories to get me over the hump.  That usually does the trick for me.  If you have some - try using them and see if it makes a difference.  Also - where are you in your Remi cycle.  Just had one or are you due for one?  That could also be the cause of not feeling well.  Again - if you are close to needing one - adding the Canasas for a bit will also help you.

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 3/8/2009 1:35 PM (GMT -6)   
I'm 25 years with UC and went into and out of remission many times. After other drugs failed I used Remecade during the last three flares and got out of them on the first two tries (also had steriod IV's and other things). When it didn't help on the third Remecade try I tried Imuran (azathioprine). I am in remission with it. Remecade is not the final drug before surgery. Try another doctor before you talk to a surgeon.
 


Kobrocki
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 3/8/2009 6:18 PM (GMT -6)   
Hey, thanks for the quick replies. I have severe left-sided ulcerative colitis not sure if that is what u meant by what form. That's all I have ever heard. I take lialda daily as well as the remicade. I actually am due for my remicade on march 16th I usualy feel a little crappy but the blood is something I am not used to seeing
That's why I expect an upcomming flare because the time of year and all. I dont have the suppositories never heard of them. Are they a prescription? I think I'll call my doctor soon I just expect them to up my dose of lialda and that stuff is getting pricey! Thanks again!
Life is not measured by the amount of breaths we take, but by the moments that take our breath away.


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 3/8/2009 7:09 PM (GMT -6)   
I flared in May of 2008, it was a small flare, and it just needed to run it's course. I tried other meds, but that didn't help. I just kept using my Humira along with Imuran and the flare went away by itself. Maybe, you just need something like prednisone or something like that to help your flares and just keep going with what you are doing medicine wise. Kinda sounda like a seasonal flare. I'm still wondering if I have seasonal flare. We'll find out this spring then huh? ;)
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/8/2009 8:15 PM (GMT -6)   
Then definintely ask for the suppositories (Canasa) or enemas (Rowasa).  They are great for when you are flaring.  Most docs feel that treating both ends will help put you into remission faster and keep you there.  And yes - they are prescription.

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 3/8/2009 8:20 PM (GMT -6)   
I have thought about the same things - what is the last option before treatment. I have had UC for many years and have flares. Mine are usually controlled by steroids, or sometimes they run their course and I start feeling better with time. I havent resorted to surgery yet because to date my life has not been in jeopardy and I have been able to deal with the reduction in the quality of my life enough to waive surgery....that is not to say it wont change in the future, but for now its my choice. I am always hopeful for new treatments so I am hanging in there as long as possible.
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 30mg pred (as of 2/01/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Spinach and sunflower seed diet (moderated recently due to kidney stones). Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


Kobrocki
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 3/8/2009 8:53 PM (GMT -6)   
Hello,
I will have to ask about the suppositories, I am willing to try anything to avoid a flare and hospital visit. I hate getting on the prednisone cry I hope I can avoid that all together... I am just trying to eat right and keep my stress levels down.. I will call my doctor this week tho just in case.. Thanks!
Life is not measured by the amount of breaths we take, but by the moments that take our breath away.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/9/2009 2:33 PM (GMT -6)   
     So you too are a springtime flare sufferer.  For the last three years my flare started around the end of March.  Last year was the worse and I had to be hospitalized for ten days.  Flare lasted till Nov 1st.  Since it was such a doozy and I am now in remission, I am keeping my fingers crossed that I will remain symptom free this year.
     I can't help but believe this disease is allergy related.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Kobrocki
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 3/9/2009 3:42 PM (GMT -6)   
Is nice to see that others have flares around the same times each year.. I wish none of us had any flares, but thats a big wish... I think I will wait until my infusion a week from today and see how it goes, if there is still blood than I should really prepare for a flare! I sure am fatigued and my lower back is sore I hate that! I hate letting this disease get in my way of life! Thanks again for the replies.
Life is not measured by the amount of breaths we take, but by the moments that take our breath away.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/9/2009 4:10 PM (GMT -6)   
I hope that you start to do better soon! You also might want to ask about enemas instead of/in addition to suppositories. The enemas can reach further in the colon than suppositories do.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


fargman
Regular Member


Date Joined Dec 2008
Total Posts : 74
   Posted 3/9/2009 4:57 PM (GMT -6)   
I just had my 4th infusion of Remi.  My doctor bumped it up to 6 weeks instead of 8 this time because my flare got worse.  I've been told by my GI that if this infusion (or the next) doesn't work, then surgery is the next step.  That Imuran and Remicade are the 'heavy hitters,' and if they can't put me into remission, nothing can.  Fingers are crossed.
Diagnosed '93. 
 
Asacol, Prednisone, Remicade, Imuran
 


Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 3/22/2009 10:37 AM (GMT -6)   
If you always have a flare the same time each year then I would wonder if it's brought about by a plant allergy. Ask your doctor if you should be taking allergy shots.
 


Kobrocki
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 3/22/2009 10:53 AM (GMT -6)   
Wow that's so scary. I rememer being told I am on maximum treatment. I think I am going to go to the lab get some blood work and call my doc. I have been tired and my back hurts. I am still losing blood and it's been a week since my infusion. I wish the best for you! Please keep me informed. Are you scared? I am of surgery. I'm only 21 I want my colon! Who knows they may find a cure and you can't just undo the surgery. Sometimes tho it seems like of would be nice to not be on constant meds... Again goodluck feel better!!
Life is not measured by the amount of breaths we take, but by the moments that take our breath away.

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