That feeling of getting worse after feeling better for a while...

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poorcollegestudent
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 5/9/2009 6:08 PM (GMT -6)   
I'm going through this point where I thought I was close to achieving remission after putting up with 4 months of constant flaring and then I started slipping and bms, blood, urgency, and pain started becoming more prevalent and frequent. I'm going to go back to my GI and see what he can recommend I do. I'm just frustrated because I've been sidelined from life for most of the past 5 months and was just getting to a point where I thought I might just be able to get some normalcy back.

I needed to let that out and this is a safe place where people almost always understand.
Andy
20 years old
Diagnosed with UC 2/27/09
Azulfidine 500mg twice a day and a variety of other supplements and probiotics


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 5/9/2009 6:34 PM (GMT -6)   
Hang tough, as this too shall pass! Maybe time to relook at your drugs and get this disease under control! There are better days ahead.http://www.healingwell.com/community/emoticons/smilewinkgrin.gif
smilewinkgrin
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 5/9/2009 7:07 PM (GMT -6)   
 Hang in there Andy....I'll say a prayer for you and I hope you start back toward remission again.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3-4X per week
Curcummin and Probiotics/Rueteri.
Bowel Soother and IntestiNew, Fish Oil, Calcium/Mag/Zinc, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Could never tolerate artificial sweetners
I try to excersice/swim daily
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 5/10/2009 2:42 AM (GMT -6)   
Hi Andy.....sucks for sure when we're feeling so much better only to have us starting to flare again.

I don't think you're on enough meds.....I would strongly suggest you ask your doc for 5ASA retention enemas. If you're in the US, it would be Rowasa, otherwise Salofalk, Asacol or Pentasa come in the enemas. There are also steroid enemas, but I would push to try the 5ASA firstly.

There are many ups and downs...it took me almost 3 years to get the hang of using the enemas to deal with flares.

Where in the colon is your UC....throughout or limited?

Is the sulfasalazine the only med you've been on so far?

Hang tough...hopefully you'll get this flare under control soon,

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 5/10/2009 3:36 PM (GMT -6)   
Andy -
 
I'm twice your age ( and then some ) but I can totally relate.  I live on the FL coast, where I've always boated and fished, kayaked and windsurfed - I'm very active - regular tennis group several times a week and trail bike in the Everglades, and recreational shooting.  I too am sidelined.  My GI is making adjustments on my meds as my Imuron is not keeping me healthy any longer - and I'm waiting for a new drug CIMZIA to take hold...so I can relate.  
 
Along time ago a GI doc told me something that has proven to be true.  He Said: " there will be times you'll think this disease is going to kill you skull ...but (he added with a smile ) you'll probably die from something else.. tongue
 
I try and lay low and watch fishing & sports  - I'm not sure - for myself that watching the Fishing channels and sports channels helps or makes me miss my life more!!    
 
           As an old-school wind-surfer we had a saying; HI HO  ( stands for Hook In & Hold On )   smilewinkgrin
                 
Daily: 100mg Immuron, 6x400mg Asacol.
Monthly: inject 400ml CIMZIA
5-lac Probiotic, Starting VSL-3, Spinach and Sunflowerseed Diet,
Omega Oil, Flaxseed Oil, Oil of Oregano, daily vitamins, strictly no alcohol.
Prayer.


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 5/10/2009 7:42 PM (GMT -6)   
Hang in there!
I felt the same way when I was diagnosed in high school. I felt like I was never going to get better and things were never going to change.
One thing I do have to say is don't let it get you. I know its hard but the more you focus on how much things could get worse, the worse they get. Trust me, I am NO optimist but one day I realized I don't want to let it kick me in the &*% (no pun intended tongue) I know that's probably the last thing you want to hear right now but I promise you one day you'll get there, even if it doesn't look like it now. This is the best to vent and we are all here for you! :)
Sam(antha)
20 year old college student diagnosed in March 2005
Remission since January/April 2006->THREE YEARS!!!!!
Trying Colazal 3 750mg x2 (NOT for a flare, just some linger symptoms?)
I was kind of stupid and started taking the colazal two days before finals week started, so I went back to asacol for the week and will go back to Colazal starting 5/9. Shame on me!!
25mg Elavil
75mg Effexor XR for GAD
"If you don't like something, change it. If you can't change it, change your attitude."
Maya Angelou

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