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elnino22
New Member


Date Joined Dec 2007
Total Posts : 6
   Posted 12/12/2007 10:35 AM (GMT -7)   
I've been reading alot of the posts and I am truly amazed by the amout of people that suffer with UC. It's heartbreaking.
I've had UC for approx 2 years.(worse on the left side)  Ive had a few small flare ups but with proper diet, probiotics and digestive enzymes Ive always been able to manage it.  Until now.
I've started Salofalk.  So far not good.  It seems to make my UC worse.  Alot of bleeding (which I had little or none of before) Has this happened to anyone?  Is it normal?  I think i've read something about symptoms get worse before better, but not 100% sure.
If anyone has any advice they could offer I would greatly appreciate it.
 

TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 12/12/2007 10:56 AM (GMT -7)   
what is salofalk?
Lori
37/F
UC diagnosed 1991
Asacal, zoloft,levoxyl, prednisone 60,50,40,30, 25,20,15,10,5, 0!!!!!!!!


elnino22
New Member


Date Joined Dec 2007
Total Posts : 6
   Posted 12/12/2007 11:07 AM (GMT -7)   
Salofalk is mesalamine.  

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 12/12/2007 1:22 PM (GMT -7)   
Hi elnino22..welcome to the forum!

What were your symptoms before you started the Salofalk...the reason is that you're now on meds after having none till now.

Are you taking the enemas or the oral Salofalk?
 
When did you start the Salofalk..,..and how much are you taking?


quincy


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


elnino22
New Member


Date Joined Dec 2007
Total Posts : 6
   Posted 12/12/2007 2:30 PM (GMT -7)   
Thanks. Great forum. Before starting salofalk I had more bathroom trips passing just mucous (tiny amount of blood) Started the enemas 3 nights ago. 4g per dose. I was having small flare ups here and there. But for some reason I could control it by probiotics, digestive enzymes and diet. I had some tests done a week ago and i think flushing out my system has caused the flare up. My problem is I really want to treat my UC with natural products but I think I have come to the point where I have to start using what the doc has given me. I worry about all the side effects of the meds.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 12/12/2007 2:48 PM (GMT -7)   
Hi....I doubt the flushing of your system (however that was done) caused your flare..I think you didn't recognise the earlier symptoms and it just has possibly progressed.

The enemas are great..., but you should also be using oral 5ASA such as Asacol...low dosage...to keep the colon above the rectum/sigmoid quiet. UC can spread upward. Not to say it WILL for you...but it's always good to have the bases covered , so to say....youll know soon enough if you need to do so. The enemas will deal with the rectum and sigmoid..and some believe a bit higher.

Try not to think of using meds as a sentence of punishment....the 5ASA meds still have the least amount of side effects. I've used the oral (Asacol) and retention enemas (Salofalk) for 19 years....no side effects that I can say.

Think of it this way. It's your insurance to keep your colon in the least possible inflamed state for as long as possible.

You can still use the diet, digestive enzymes and probiotics....most of us do in conjunction with one med or another.

How long did the doc say for you to be on the enemas? I hope you got lots of refills.

Remember that they have to be tapered. Because....that's how you find your maintenance dosage to prevent further flares...or intensity of flares.

My UC has NEVER been as bad as when I was first diagnosed. By using 5ASA meds, it's strongly believed that they can protect the colon from cancer. I can attest to that "theory"....my last c-scope in September was perfectly clear of any abnormal/precancer/cancer cells (36 biopsies).

It's a decision you'll have to make for yourself as to whether take meds or not. You may not need them often...or you may need to be on a low maintenance dosage for a long time and increase during flares.

My doc's philosophy is to treat both ends....use the lowest possible dosage for the longest period of time. Since UC starts at the rectum...it will always be inflamed no matter how high it goes. It's the first place to be inflamed, the last to heal.....so, using rectal meds is numero uno!

We all learn what works best for us...eventually.


quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 12/12/2007 7:07 PM (GMT -7)   
elnino22 - welcome to healingwell!

I happen to agree with Qunicy that meds are necessary to treat MY UC. I do know there are others on the forum who disagree and use only "natural" products. Hey - what ever works is what you need to do. In keeping with that theme, I remember that there are other members who have used vitamin e enemas or aloe enemas. The only thing I really remember is the aloe is the lily of the desert whole leaf aloe gel. You'd have to dig through some old posts to find specifics.

Another thing to consider. Some people are sensitive to 5ASAs. You may want to talk to your doc about the symptoms you are experiencing. It could be the "worse before it gets better" thing or it could be something else entirely. It's best to ask your doc if you're concerned!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate

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