Out of Remission

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buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 2/16/2009 9:52 PM (GMT -6)   
I have struggled with UC since I was 13. I am now 25 and am having my worst flare-up yet. I was lucky to have been in remission for four years and am trying to focus on the positive sides of things and think I was lucky to be healthy for so long but I'm having a very difficult time with that. All I want to do is scream, WHY ARE YOU BACK?! I try to take care of my body by working out and eating right and I feel that my body has betrayed me. For so many years I have mentally denied that I have an illness. I have taken the meds every day but wouldn't do any research about it. Now, after all these years I wish I would have found this blog earlier. I have never been able to talk with anyone who has UC and can relate. I have a very supportive husband and family but it's different than actually going through it. This flare up seems to have snowballed very quickly. I have been on 6MP (75 mg) and Asacol for many years now and a few weeks ago I saw blood. I called my doctor right away and he doubled my asacol. I quickly was getting worse so he put me on cortifoam and upped my 6mp. My first thought when I saw the blood was I don't want this to go be another round of steriods. I was trying to stay positive but because I have not responded to anything else and I had to spend the last three days in my apartment, close to the bathroom, I started on 60 mg. of prednisone today. I am thinking about all the frustrating side effects that I have had before and dreading them coming back. It's more superficial things than anything else but I always gain wait, especially in my face and get bad acne. As a teacher it is hard to avoid the germs so I am hoping that my lowered immune system will be okay. My husband and I were goign to start trying for a baby which now will go on the back burner until I'm healthy. How do other people feel when they get out of remission? Is there anyone else that teaches and has ideas of what to do to avoid having to go to the bathroom and having no one to watch your kids? Did the prednisone help with the lack of energy? I usually have an ENORMOUS amount of energy and the last week I have been winded going up the stairs. Are there any vitamins that people take to increase energy since there is so much blood loss? I take a multivitamin already.

I look forward to finally finding the support I needed after 12 years of feeling like I was the only one.
Diagnosed when 13 and am now 25. Currently taking 100mg of 6mp, 60 mg of prednisone and 12 pills of asacol a day


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/16/2009 10:32 PM (GMT -6)   
yes i was in a similar predicament. i was in remission for sometime and unlike you i stupidly stopped taking the meds and i flared like no other in september and have not been right since. I am just coming out of another flare as well. I've been on steroids for the most part since september. It just feels like it aint fair to be feeling good and teased..and then it all comes back again and you are reminded of your very real illness. getting out of remission for me has been quite devastating to say the least as I had plenty of good things going for me that now have to kinda take a back seat as I hope to solve my current health issues.
prednisone will usually help with lack of energy unless you are VERY sick. thats when you know you are in trouble. The blood loss might look worse than it actually is.. just a few drips can make the toilet pretty bloody looking so before you panic about blood loss check your blood levels to ease your concerns. As per vitamins, i drink gatorade for electrolytes while on steroids(messes up your balances), I eat bananas, take a multivitamin, calcium for bones, and fish oil.

Give the pred some time to work. 60 mg through 30 mg is harsh...but it gets easier once you get into the 20's. Good luck with your recovery :)

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now *In Hospital* |Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 50 mg|6mp 75 mg|lialda 4.8 mg|Cipro/Flagyl|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|
 
 
 
 


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 2/16/2009 11:06 PM (GMT -6)   
Maybe a different 5 ASA drug would help.

At the end of my bouts, Cyclosporine and Colazol worked better than Asacol.

6 MP was a no go.

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/17/2009 3:00 PM (GMT -6)   

Hi Jenny!  So glad you found this forum after all these years.  It's always horrible to start flaring again after being in a long remission!  Just when you feel like all is right...bam!  First off - have you tried any other enemas besides cortifoam?  You might find using Rowasa (Solafolk in canada) might be just the thing you need.  In the height of my last major flare - I used Rowasa at night and the cortifoam by day.  I found it really helped.  The lack of energy might have nothing to do with the meds.  When I'm flaring I find I'm completely exhausted and just walking on the street can leave me winded.  I would also add that you should consider adding calcium to your regimen just to counteract the side effects of the pred.  I take viactiv.  Keep us posted on how you're doing!


Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


Cadillac Lover
Regular Member


Date Joined Feb 2009
Total Posts : 235
   Posted 2/17/2009 3:21 PM (GMT -6)   
I'm not a teacher but I feel you on the flare up tip. I'm a 28 year old male and i've been having a nasty one for a couple months now & just today I was upped to 60mg pred a day and I'm starting 6mp tonight. This is my first flare up since being diagnosed last year with UC. Hopefully it takes a hike soon. Good luck & hopefully you & yours can have that baby soon!
Diagnosed with UC summer of 08.
Currently taking asacol 1600mg 3 x a day, Prednisone for 50 days & Mesalamine rectal meds twice a day.
Currently having a flare.


buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 2/17/2009 3:48 PM (GMT -6)   
I have tried the different kinds of suppositories and nothing in the past has worked. I have unfortunately always had to turn to prednisone but luckily for me that has always done the trick. Today was my first day back to work after an extended weekend (school was off) and after only being on the prednisone for two days I think I feel a difference already. I got up really early this morning to go to the bathroom three times, I know we all feel that pain, but then I haven't had to go since. Often when I'm distracted by the kids my body knows it and it's not too bad. HOpefully I can stay on the right track. My doctor has never said anything about restricting foods before but now has said I should lay off caffeine and dairy. Do other people do that? I haven't noticed any food changes helping/hurting yet and I love my coffee in the morning so I'm wondering what others have been told/do...

THanks so much already for your replies. Since that was my first post and first admittance to the world (our community) that I have colitis I have been feeling more supported than ever. I check the board too much to reassure myself that there are others out there. Thanks!
Diagnosed when 13 and am now 25. Currently taking 100mg of 6mp, 60 mg of prednisone and 12 pills of asacol a day


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/17/2009 3:54 PM (GMT -6)   
When I'm flaring the doc says to stay away from caffeine, dairy (if I feel it bothers me - which it does), red meat, and all raw fruits & vegies.  But the list is subjective.  Each person finds what does and does not work for them.
Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!

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