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frombc
Regular Member


Date Joined Oct 2006
Total Posts : 219
   Posted 6/23/2009 2:38 PM (GMT -6)   
I haven't been around the forums for quite a while, so I thought I would drop in and say hi and give you an update on my UC.

about a year ago, I was still having some mild flares (mostly blood on stool) so my GI wanted to try something with me (totally my choice whether I wanted to try or not).

He took be off the asacol and had me do the Salofalk enemas every night for 2 months. There was no more blood after the 2 months so I started a taper of 6 nights a week, missing one night and so forth. He said I should work my way to every third night and never go less than that.

I've been in remission ever since. I have had the odd spot of blood, but it only lasts a couple of days. My stools are fully formed and I'm going only once or twice a day. I feel great. I was a little hesitant at first to go off the asacol, but because my UC is so low in my colon, he said the enemas were more important. I was actually never able to get into remission with the asacol.

I know there is a school of thought that asacol can help prevent the spread of UC, but I was willing to give it a try so as not to have to take the meds. So far it seems to be working.

I hope you are all doing ok. I will pop in to say hi every now and then.
Gina
50 year old female
Dx'd with proctosigmoiditis July/06
Salofalk enemas 4(g) at bedtime every 3rd night
...Aloe
Vit B complex/folic acid
fish oil (pharmaceutical grade)
VSL#3


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 6/23/2009 3:11 PM (GMT -6)   
Glad to hear you are in remission! :-)
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Trying Applied Kinesiology & supplements.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 6/23/2009 3:19 PM (GMT -6)   
Hi...it's definitely been a long haul for you, that's for sure.

I can't remember if you were only on the Asacol...then taken off when just trying the enemas?

You really should be on both...

But, it's great you're doing well....

Thanks for letting us know. As well, your tapering tip is one I might suggest as well, especially for those who are having a difficult time getting past every second night.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


frombc
Regular Member


Date Joined Oct 2006
Total Posts : 219
   Posted 6/23/2009 4:35 PM (GMT -6)   
Thank you AMK77!

Hi quincy! Yes, it took about 2 years to get into remission.

I was on both asacol and the enemas before doing just the enemas. My GI and I did discuss whether or not the asacol was beneficial, and he didn't think it was necessary if the enemas alone were working. He doesn't believe asacol prevent the spread of it further up the colon.

The way he had me taper was different than the usual, it would be worth trying for those having trouble.

I must admit I was a little afraid, but now that I'm doing well I'm glad I'm not taking it. If things start to go awry, I would have no problem starting it up again. I hope you're doing well, thanks for replying.
Gina
50 year old female
Dx'd with proctosigmoiditis July/06
Salofalk enemas 4(g) at bedtime every 3rd night
...Aloe
Vit B complex/folic acid
fish oil (pharmaceutical grade)
VSL#3


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 6/24/2009 1:41 AM (GMT -6)   
When's your next c-scope?

If you do end up with diarrhea consistent with possible flaring, I would suggest you ask to be put back on the Asacol...

How much were you taking anyway?

Just to let you know that I can see if your UC is limited, using rectal meds to control it can be fine...but...the 5ASA meds are also a good thing to use to help keep any inflammation down...and one never knows if his or her UC will spread anyway...but it does happen.

As well...the asacol in a very low dosage of 4 or 6 daily can help in the protection against colon cancer....just something to think about.

Hope you continue to feel well....finally!

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


frombc
Regular Member


Date Joined Oct 2006
Total Posts : 219
   Posted 6/24/2009 10:23 AM (GMT -6)   
My next c-scope is in 2010.

I never did have dairrhea with my UC, it's always just been blood, mucus on the stool. My frequency never got to more than 4 times a day. I would say I've got a mild, but stubborn case of it.

I was taking 9 asacol a day, sometimes down to 6 when things seemed to be calmed down.

Thanks for your thoughts on quincy, I appreciate it.
Gina
50 year old female
Dx'd with proctosigmoiditis July/06
Salofalk enemas 4(g) at bedtime every 3rd night
...Aloe
Vit B complex/folic acid
fish oil (pharmaceutical grade)
VSL#3


frombc
Regular Member


Date Joined Oct 2006
Total Posts : 219
   Posted 6/24/2009 10:38 AM (GMT -6)   
Don't 'ya just love life. I just went to the bathroom and my stool had blood on it. I had to open my big mouth and say how well I was doing.

I guess I'll be doing the enemas every night again until it settles down. I wish I knew what set off flares. f%#k

Maybe it's just hemmies?

Post Edited By Moderator (bbc) : 6/24/2009 7:00:52 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 6/24/2009 5:15 PM (GMT -6)   
Murphy's Law at work once again....bwahahaha!

Stubborn is right! yes, I do remember it all now.

Tell me....any constipation or that type of symptoms?

I'd start the enemas nightly...and really, I can relate.

The flare I had at Christmas was extremely mild, but I was sick for most of the fall off and on but taking tons of Cold FX. I think that combo and Christmas coming and me being busy led me to a flare with a tiny bit of bleeding as well. Which shocked the socks off me.

The enemas had everything in control quickly, and I tapered very fast....well, humbled once again, I had to go back to nightly based on frequency and those white-knuckler, squealing bms....ugh. So, I decided to taper nice and slowly and in July will go to every 4 nights. Down one enema a month....so far it's great.

I did start the Metamucil capsules (now taking 3 twice daily with meals) and changed my probiotics which is all working out well.

I've been through a pretty stressful Spring...but no relapse, so all is good.

Unless me talking about it causes Murphy's Law to rise again...

Your end comment is what I would say all too often. Wish those symbols would come out of my mouth instead....but working on being "nicer"..haha.

Keep us posted as to how you're doing.
quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/24/2009 5:49 PM (GMT -6)   

My new - very experienced gastro doctor told me since I can't take the mesalamines and I need to get off the prednisone to use the rectal meds three times a day until in remission.  I am starting tomorrow (as my pharmacy had to order the Cortifoam).  Cortifoam followed by the Anusol suppositories three times a day.  I imagine I will be lucky to do twice a day some days - like when going out for the day but doing my best.  He said the only way for me is "topically".  I am down to 7.5 mg. of prednisone with no problems except maybe a little urgency more than before.  Two or three regular BM's and little if any blood! I have also been over a year with 3.5 months on prednisone.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


frombc
Regular Member


Date Joined Oct 2006
Total Posts : 219
   Posted 6/24/2009 6:25 PM (GMT -6)   
Hi quincy, No, no consitpation, but that tugging sensation in the rectum with some itchy feelings. I used a salofalk suppository right away and will be starting on the enemas every night.

You know, now that I think back, about 3 weeks ago I was feeling so good, that I went for 5 nights without doing the enemas. I had a teeny bit of blood within a couple of days, so did the enemas every night for a few nights and was fine again. I think it must've set things off.

I guess that's why the Dr. said not to go less than every third night. I shouldn't have gotten so cocky I guess.

I'm confident that I'll get this back into remission quickly and take the taper back to every 2nd or 3rd night slowly. I won't be going that many nights between ever again...lesson learned. Muryphy can shove it! Take care.
Gina
50 year old female
Dx'd with proctosigmoiditis July/06
Salofalk enemas 4(g) at bedtime every 3rd night
...Aloe
Vit B complex/folic acid
fish oil (pharmaceutical grade)
VSL#3


frombc
Regular Member


Date Joined Oct 2006
Total Posts : 219
   Posted 6/24/2009 6:32 PM (GMT -6)   
Hi there Elaine, It sounds like we'll both be buns up kneeling for the next while. I'm going to supplement the enemas with the suppositories also and hope to get back into remission quickly.

Sounds like your GI thinks along the same as mine about treating topically. Good luck and let us know how it goes.
Gina
50 year old female
Dx'd with proctosigmoiditis July/06
Salofalk enemas 4(g) at bedtime every 3rd night
...Aloe
Vit B complex/folic acid
fish oil (pharmaceutical grade)
VSL#3


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/24/2009 7:52 PM (GMT -6)   

Thanks Gina,

You can be buns up but I have to do mine on the toilet.  I have arthritis so bad and am so overweight that is the only way and why I chose the foam - easiest to get in and keep it in.  No fun but neither is UC!!!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 6/25/2009 3:32 AM (GMT -6)   
frombc....ditto regarding Murphy..lol!

We all get cocky regarding meds sometimes...I've done it lots of times...but nothing like being humbled into reality.

Twice a week with the enemas seems to be what's required to maintain a remission with the enemas....I'll go to every 4th night and probably not beyond that.

Limited rectal disease, especially low in the rectum, can be difficult to treat...with the enemas, you might consider to sit or lay on your back after administering them...

Just imagine how much yer a'learnin' through this experience...lol!


Keep us posted as to how you're doing.
quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 

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