Prednisolone didnt work and now started with Salofalk enema - has anyone got any advice with this?

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Debly
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 5/19/2009 5:10 AM (GMT -6)   
Hi all,
 
This is becoming increasingly frustrating!
 
My 12 week high dose course of Prednisolone didnt work in treating my Pancolitis. My GI did a flexible sigmoidoscopy last week and i'm awaiting the biopsy results. In the mean time he suggested trying Salofalk enema. 2 x sprays per night (1g in total). However, i am finding near impossible to keep in. As soon as i put it in, it makes me want to have an urgent BM. Even if i do hold it in during the night, i wake up with terrible diarrhea. In fact i have noticed i go to the toilet about 3 times in 1 hr in the morning since starting Salofalk. I've only been on it for 4 days, so will it take longer to work? Is diarrhea a side effect of Salofalk.
 
Also, the other question i have is, i am currently going to the toilet about 4 - 8 time's per day (never formed and always diarrhea). Although i have pancolitis, does this mean i have  a relatively mild case of it? So would surgery at this stage be far too premature? I'm running out of options as nothing seems to be helping me.
 
Delby

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/19/2009 10:26 AM (GMT -6)   
IMO, 4-8 times per day isn't that bad. I was having 15+ at my absolute worst point. I found that Asacol (mesalamine enema, I think the same as Salofalk) really helped me a lot. I haven't had a problem keeping it in, though.

I think it's waaaay too soon to be thinking about surgery. Are you on any oral meds such as Asacol? If not, you REALLY need to be. What all meds have you tried? There are still immunosuppressants such as 6MP and Imuran, as well as the biologic drugs like Remicade and Humira (not currently approved for UC, but if you can't take Remicade, Humira is an option).

Have you tried probiotics? They seem to make a difference for many of us on here.
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).


Debly
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 5/19/2009 12:54 PM (GMT -6)   
Thanks Fruitgirl
 
Yes i'm on Asacol (800mg x 3 day) and i've just finished a 12 week course of prednisolone starting at 40mg. That didnt work and the Asacol hasnt worked either. I guess before i was on any oral meds, i was going to the toilet between 10 - 20 times a day, so i definately go less, but i still have the same BM urgency (barely make it to the toilet sometimes) and ALWAYS have diarrhea. I havent passed ONE solid stool for the past 2 yrs.
 
Yes, the Mesalamine enema is the same as Salofalk. I only started it last friday but so far its giving me more diarrhea. In the mornings its terrible. I guess its too premature for surgery, but i wonder how long my colon can remain inflamed before, God forbid, i get cancer. Having diarrhea everyday, with no break year on year, cant be a good thing. Then again, the Dr did say that the results of my sigmoidoscopy show that the colon is midly inflamed....
 
I am living with another life threatening disease far far worse than UC, but the strange thing is UC gives me more day to day problems. For sure. And due to this other disease i am living with, i am unable to take immunosuppresants so my choice is limited.
 
So should i just put up with diarrhea, cramping and urgency for the rest of my life....what a 'crap' disease hey!!!

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/19/2009 12:58 PM (GMT -6)   
Well, if your quality of life is limited and you don't really have any other med options (I guess the biologics are out, too, as they suppress the immune system?), then no, I don't think it's too soon to think about surgery. I've decided that if my quality of life is suffering too much (and my tolerance for this is pretty low), then I'll have surgery.
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).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 5/19/2009 1:11 PM (GMT -6)   
I think the fact that you were on prednisone and it didn't help will set you back a bit.

The Salofalk will take at least a week or two or even three to have marked improvement...and you may need to stay on them for a while before even attempting to taper down to a maintenance dosage.

Using the enemas is a faithful commitment, and it's normal to have urgency in the morning, even if I have mild inflammation in the rectum during flaring...urgency is my issue. Patience is definitely a must...as per my doc and my first two years of learning how to use them to my advantage.

I know you're in a bad place mentally...but try to keep things in perspective. UC sucks bigtime, and I grumble and swear at it when I'm flaring. I hate having it, but that doesn't mean I don't have the tools to deal with it.

If surgery is what you really want, then do that route....but try to focus your energy on the patience part of seeing the treatment through. If you cannot use them....you will find that out....then think about your next option.

If it's any consolation....they believe that 5ASA meds help in protecting the colon from cancer. We have to be checked through biopsies regularly...but that depends on how often we flare as well...constant inflammation my increase our risk....but that's not a focus for you at this time.

Give the Salofalk and Asacol a FAIR try. Hang tough....if you can use them to deal with your flares, it's something that you could probably use for the rest of your life.

Curious...are you in Canada? if so, where....I'm in Winnipeg.

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 !!!
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16728
   Posted 5/19/2009 2:10 PM (GMT -6)   
If Asacol has brought you down from 10 or 20 BMs a day to 4-8, that's a pretty big improvement. Why not see about increasing the dose of Asacol you take? I was taking 1200mg 3x a day. That is quite a bit more than you take and it sounds like my inflammation may have been less severe. Why are you only on 800mg 3x a day? I currently take 800mg 3x a day and my inflammation is almost healed. I have seen people using 1600mg 3x a day + rectal meds. I think that would be a start but also, maybe you could start at a higher dose of pred like fruitgirl said? I have heard of people starting at 60mg. I've never had to use pred luckily because my inflammation is well managed with 5ASAs. I would call my GI and ask about increasing the dose of some of these meds - starting with the asacol.
 
I didn't have a solid stool for over a year before a few weeks ago. Even after a couple months on Asacol, I wasn't consistently having firm stools. I had D a lot and tons of urgency. As a matter of fact, I still have some urgency, not nearly as bad as before but still there. I have heard the urgency is the last symptom to go away. I wouldn't consider surgery until you increase your Asacol dose, try more rectal meds and maybe start at a higher dose of pred. You could give suppositories a try if you can't keep the enema in. I couldn't even keep a suppository in when I was flaring, nevermind an enema. If you get some suppositories, you can use them in the morning, they don't leak out or anything. After a BM in the morning, put one in and go on with your day.
 
When I was put on Asacol, I was flaring really badly and only 1200mg Asacol 3x a day + 1000mg salofalk suppository morning and night got me to where I am. I now have normal stools and no more feeling like I didn't empty my bowels. No blood, no more anemia... Don't lose hope, you will beat this!!
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa at night + Probiotics + Iron - So far so good!!!
 


lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 5/19/2009 4:13 PM (GMT -6)   

go to google and type in ulcerative colitis fasting in the search....read the story about jack goldstein....i just read it and am really curious.

 

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