Remission for over two months now (There's hope!)

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julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 1/17/2009 12:19 AM (GMT -6)   
I just wanted to come back to the forum to try to share some hope for anyone who -- like me -- thought that they'd never feel well again. I've had the best two months I've had in about a year. Of course, I hope this continues!

I'm taking 6MP (which I've taken for a couple years) but just added Lialda last Fall and recently the Asacol foam -- which, i'm sad to say is not available in the U.S. For the first time in a year, I've stopped using Cortifoam and am just using the Asacol foam. This is great because even though I know the Cortifoam isn't really, really bad for you, it's still not great and I've already got some bone density loss to worry about. If anyone in the US is really anxious to get the foam and can make the trip to another country to get it... well, I recommend it. Unfortunately, it's not exactly the kind of thing you can ask a friend to bring back from their business trip in the UK!

Here are some things I've noticed recently:
*If I skip my maintenance drugs, I notice it the next day.
* When I was at my worst, I concentrated on eating protein and spinach. It really helped.
* Now that I have a little less stress, I'm better in general.
* I still need a TON of sleep to feel rested. 9-10 hours

And last,
* I switched doctors after many years with the same GI just to get another approach. It helped because he could explain things to me in a new way and I got very optimistic. I'm sure that must have helped too.

I send everyone a lot of good wishes for feeling well.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 1/17/2009 12:37 AM (GMT -6)   
Wow, Julee! That's great news!!!!!!!!!!! I'm so glad you came back to update us-- because we were kind of left dangling after you got advice from Knitty_Cat re the mesalamine foam purchased during your trip abroad. So it really does help? Terrific!!!!!!! Strangely enough, the CCFA Website recently posted a report from Reuters that discusses a positive research outcome for this foam used by patients in a study conducted in France. I can't figure out why they're hyped on that when the foam has already been marketed in the UK, Australia, etc. for some years now. We just HAVE to get it distributed here in the U.S. & Canada! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 1/17/2009 1:40 AM (GMT -6)   
Hi Julee...awesome to hear you're doing so great!
I do wish the Asacol foam was available in N. America....but until then, for me, the Salofalk liquid still does its thing for me.

Be well....
quincy
*Heather* Status..Asacol  (3 twice daily); flaring /Dec 22, tapered to every 3rd nite/ Jan 13
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 1/17/2009 9:50 AM (GMT -6)   
Thanks for the kind replies. Yes, Knitty_Cat was my hero! I emailed her directly after I realized she wasn't checking the boards that much anymore and she gave me such great advice about the foam. I have to admit that when you look at one year's worth of rectal meds in the closet, it can be pretty daunting!
My doctor said that he had heard that there was finally some forward movement on getting the foam approved here. It was good to hear that someone somewhere is working on it. I'd tried to get the CCFA interested in the cause but apparently that's not part of what they do. (Although, really, why not?)

The strangest thing about the foam is that you attach a little plastic tube to the canister and spray it directly in. That is exactly what the Cortifoam instructions say not to do! Without Knitty_Cat's helpful confirmation that it really was safe, I would have been staring at that thing for an hour wondering if I was about to do something really stupid by having mis-translated the directions!

The only thing I feel bad about now is that I have a lot of enemas that bought a few months ago that I'm not going to use. I hate that all those expensive drugs are going to go to waste. I'm thinking of asking my doctor if he knows someone without insurance who he could give them to. I don't know if legally there's really anything I can do with them and they're going to expire later this year.

Meanwhile, I'm doing everything I can to stay in this good shape. It kind of feels, though, that it's really not tied to anything I'm doing and that the drugs are finally in the right combo.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/17/2009 12:30 PM (GMT -6)   
     Could the Cort enemas be similar to the Cortafoam?
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.


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 1/17/2009 12:35 PM (GMT -6)   
Christine,
I'm not sure what you're asking... the cort enemas are the same med as the Cortifoam but in a liquid delivery method instead of the foam. What I bought out of the country is the same medicine as Rowasa but in foam form, not liquid. My whole thing is that the liquid makes me feel awful and winds up keeping me up all night.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy

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