New here...my story

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

shortstuff
New Member


Date Joined Feb 2009
Total Posts : 11
   Posted 3/12/2009 8:23 PM (GMT -6)   
Hi everyone! I am so happy I found this forum, finally people who know what I'm going through!

Here's my story and what I'm currently going through:

I was diagnosed with UC in 2001 at age 15. I spent 12 days in the hospital and up until December was in remission. I went 7 years with no flare and now I can't seem to get out of this one! I refuse to go on Prednisone b/c of the same reasons everyone else doesn't want to. The side effects were so bad for me when I was on it 7 years ago that I told my gastro that I will not go on it unless absolutely necessary. I have been to see him every 3 weeks since Jan, each time trying or adding something new. It started with Lialda, which I'm pretty sure made my symptoms worse. Then back to Pentasa, then adding Cortenemas, and, as of yesterday adding Entocort. I asked to be put on it in hopes it will do the trick. He was very happy I asked and even laughed and said "You have definitely expressed your reservations about steriods."

This flare has been so tough and the cramps that have started since I began the Cortenemas have been so bad. It's nice to come here and read that other people know what it's like, because to someone without UC it's as if we can just go on with our lives, and it's hard to explain what the pain is like.

So glad I found you guys!
22-High School Student Teacher

Pentasa- 4 pills 3x a day
Cortenemas nightly
Entocort 3 pills a day

Currently flaring =/


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 3/12/2009 8:40 PM (GMT -6)   
Welcome - you're not alone!
31 yr old female currently breastfeeding
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse, MUCH worse
Not taking any meds for now. May be on 6mp soon?


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 3/12/2009 10:05 PM (GMT -6)   
Don't listen to supersaw.....his logic is skewed....must be the pain deluding judgement.


Continue with your first-line med regimen for now. You could have requested the 5ASA enemas (Rowasa / Salofalk / Asacol / Pentasa...depending on where you live).
 
Did you recently have a c-scope to determine the severity of your UC?  Where is it..limited or throughout?

welcome to the forum, by the way.

quincy


*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 3/12/2009 9:09:38 PM (GMT-6)


Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 3/12/2009 10:09 PM (GMT -6)   
I agree not to listen to Supersaw. I know Pred has been a blessing for some, but there have been more that have said the side effects were worse than the UC, and some couldn't get off the Pred at all. Some left with permanent damage.
I don't blame you at all.
Oh and welcome/.

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/13/2009 4:55 AM (GMT -6)   
Hello there. Looks like you are getting the equilivent of pred up the rear anyway, without the systemic effects. It's always better to treat directly with the enemas like you are doing, rather than take the scenic route, lol. Hopefully you come out of this flare soon.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/13/2009 6:30 AM (GMT -6)   
It depends on how bad the flare is and whether or not alternative treatments work for you.

I took Prednisone when my symptoms were severe. I was close to losing my colon. I hadn't had time to try alternative treatments. Prednisone bought me time.

Otherwise, I would use less evasive medicines (if they worked) and try alternative treatments at the same time so that I won't always have to be taking medication.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 3/13/2009 8:02 AM (GMT -6)   
Yeah Prednisone always helps me when I'm real bad. I always go as long as I can before I have to take it because it's hard on the body. A miracle drug for me would be Prednisone with no side effects at all. Right now I'm taking the rectal meds and they are allaying the symptoms of my current flare. I'll be seeing the doc on the 31st, to see if I can stop Azathioprine because it's not working at all.

Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day
 
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 3/13/2009 9:19 AM (GMT -6)   
I'd encourage you to look at alternative therapies and dietary and lifestyle changes that could support your efforts to regain remission and will help the meds you're on to be more effective.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/13/2009 4:38 PM (GMT -6)   
     Prednisone is the only drug that helps me achieve remission.  Not happy when I have to take it and neither is my GI doctor, but sometimes you just gotta do what ya gotta do.  The 6MP seems to be doing its job. Not happy about taking that either.  I developed osteoporosis from the prednisone too.  Feeling well since Nov...so, keeping my fingers crossed. :-)
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.


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/13/2009 4:54 PM (GMT -6)   
Hey Shortstuff!  Welcome! :)
 
I say skip the pred for now.  I would definitely ask for the 5asa enemas - Rowasa etc.  And then I would use those at night and the Cortenemas in the morning.  The combo should definitely kick some UC butt! 
 
Where exactly is your UC located?  Perhaps a different 5asa drug will work better for you.  I have left sided and I take Colazal because it has been shown to release later in the colon than some of the others - getting to the affected area better.
 
Have you tried probiotics?
 
 
Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


shortstuff
New Member


Date Joined Feb 2009
Total Posts : 11
   Posted 3/13/2009 5:27 PM (GMT -6)   
Thanks for all the replies guys! I'm not sure exactly where my colitis is located, but its farther down my rectum. It's been since 2002 since I had a colonoscopy and the Dr. doesn't want to do another until I'm out of this flare. Prednisone for me is a final resort, if everything else has failed and I'm on the verge of something drastic. I'm hoping the Entocort will do the trick. I started it yesterday and already feel somewhat better today and have noticed significantly fewer trips to the bathroom!! The Dr. at first suggested the enemas twice a day, but with being a teacher and having to leave the house at 6:30 AM, I just don't think that's going to happen right now. I have been somewhat trying the sunflower seeds and spinach, but probably not strictly enough for it to make a difference. My boyfriend goes with me to all my appointments and his response to the news meds was "So the enemas are supposed to work from the bottom up, and the Entocort and Pentasa from the top down. Sounds foolproof." HA...if only this disease was foolproof!
22-High School Student Teacher

Pentasa- 4 pills 3x a day
Cortenemas nightly
Entocort 3 pills a day

Currently flaring =/


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/14/2009 8:06 PM (GMT -6)   
If you can't use the enemas in the morning - try using a suppository like Canasa.  You don't have to lay down for those and they are much easier to maintain.

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

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, September 23, 2018 4:11 AM (GMT -6)
There are a total of 3,005,816 posts in 329,272 threads.
View Active Threads


Who's Online
This forum has 161805 registered members. Please welcome our newest member, fdgdfhdff8804.
226 Guest(s), 1 Registered Member(s) are currently online.  Details
bluesax7