rectal meds are helping my pancolitis

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/20/2008 11:07 AM (GMT -6)   
(Qunicy, you'll love this). Just wanted to throw that out there, as I had assumed rectal meds wouldn't do anything since pancolitis is so extensive and rectal meds only get you so far. right now, my GI has me doing cortfoam in AM and Rowasa in PM. Have been doing this for 2 weeks and am scheduled to do it nightly for 4 more weeks. If I am doing well at end of those 4 weeks, the GI said will start to slowly taper both, and then iterate to see what I end up needing long-term. he said that studies indicate that even just using rowasa once a week, once in remision, can help sustain remission.

After 2 weeks on this regiment, I actually feel normal again. Have dropped from 10 - 15 BMs/day to about 1-3, with no blood, and very little urgency. Fully Formed. Generally have tons more energy and am eating everything I want (though in moderation, still can't pack away the pizza like I used to, or the salad, for that matter). and, incredibly, I improved within about 4 days.

so, my point is, for any of you with extensive disease who have not yet tried rectal meds, you may want to consider them. not saying its a magic bullet, but it has been helping me. Hope all of you are well.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4509
   Posted 2/20/2008 11:29 AM (GMT -6)   
Great to hear you've seen so much improvement! Definitely keep us posted on your progress with tapering and what works for you. I'm hoping my new GI will put me on Cortifoam and that it will work for me, too.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 2/20/2008 1:05 PM (GMT -6)   
Quincy can just hang out a shingle! She gives better advice than many gastros. Brava! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

BTC
Regular Member


Date Joined Dec 2007
Total Posts : 96
   Posted 2/20/2008 9:05 PM (GMT 0)   
I finally got my gastro to give me a script for Canasa suppositories today - I can't keep the Rowasa enemas in. Should I have asked for the foam? Darn!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30842
   Posted 2/20/2008 3:33 PM (GMT -6)   
LOL OH...I regurgitate the same old unfortunately, but eventually it's found out they can work well for most

UCinNC...happy to hear you're feeling much better...Yes, I love to hear it!!!

BTC...the 5ASA has a foam formulation in the UK and Australia I believe...not in N. America. The steroid rectal enemas have a form formulation that could be worth trying. The Canasa can work quite well...but is a lower dosage and can be used up to 3 times a day, however.
Are you on oral meds as well?

Rectal meds...who would'a thunk?

q
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~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 !!!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/20/2008 6:17 PM (GMT -6)   
It makes perfect sense. Pancolitis means "throughout the colon." The oral meds can have the colon completely under control, but the rectum and sigmoid can still be ulcerated, bleeding and flaring, so you're still sick. I wish I could use Rowasa, I might not have needed to go on Remicade. But I'll never know that for sure.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


BTC
Regular Member


Date Joined Dec 2007
Total Posts : 96
   Posted 2/21/2008 9:31 PM (GMT -6)   

Quincy: Yes - finally got my script today and will try them tonight. Had a massage and steam today at my daughter's gym so I'm all relaxed. Thanks for the info.

Diagnosed with LS UC 1984, suffered for 16 years, high doses Pred and eased off to Azulfidine; remission for 9 years, just flared recently. Asacol 3, 3x day; 20 ml. Pred.. Heading into remission again with addition of: prayer, deep breathing, walks on the beach and: 4-1000 mg.garlic twice daily; 2 zyflamend twice daily, SuperFoods RX multi-whole food vita twice daily, SuperFoods RX Omega 3; 3 Asacol 3 x day with 3 Vitamin Shoppe Ultimate 10 Probiotic; Metamucil morning and night - no dairy, hardly any coffee (Just added Hevla decaf), lots of water and green tea. Was using L-Glutamine but read that it can aggravate? Recently added: 1 scoop Greensplus Chia seeds and the vinegar and honey regimen.


KSpace
Regular Member


Date Joined Jan 2008
Total Posts : 72
   Posted 2/21/2008 11:04 PM (GMT -6)   
That's great news that you're doing so well! Ironically, for me I am supposed to have left sided colitis, but the Cortenemas alone did not help much. After I started Lialda, I had significant improvement. Does that mean I have more than left sided colitis? I don't know. Weird. But regardless, I'm very happy for you! I know how great it feels to have improvement! Hopefully it stays that way. Keep us informed.
15 cm left sided colitis
Currently on Cortenema and Lialda since Feb '08
Lialda has been amazing!


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/22/2008 12:44 AM (GMT -6)   
After reading Quincy's mantra of "treating both ends" many times and discussing with my husband awhile back when the oral meds were not taking care of that end of things, we requested rectal meds at a Dr appt. They definitely have made a difference.

The colocourt was too difficult for him to keep in and retain more than and hour or so. We switched to the Cortifoam which was so much easier on him. The canasa suppositories he does not use every day. Even the cortifoam now is generally every other night.

That is good advice for alot of you to try if things are not improving and discuss with your Dr.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


quincy
Elite Member


Date Joined May 2003
Total Posts : 30842
   Posted 2/22/2008 2:27 AM (GMT -6)   
It's great to hear that more doctors are prescribing rectal meds and that many are realising they can work for them,


BTC...please keep us posted as to how you're doing. Mellow is good.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~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 !!!


ioscan -fnk
New Member


Date Joined Jan 2008
Total Posts : 12
   Posted 2/22/2008 3:26 PM (GMT -6)   
+1
I tried for a year to get my G.I. to write me a script for Rowasa but he was so stubborn about it not being useful for pancolitis. I would tell him that I'm normal in everyway except I see blood and he would insist that the Colazal "gets all the way down" and Rowasa will not help me and that he wasn't overly concerned with a little blood if I wasn't feeling bad in other ways.
 
Finally he grudgingly gave me a script for a one month supply with no refills on 12/26. I used 1/3 to 1/2 of a bottle 3 or 4 times a week to conserve them and by around 1/6/08 I was (still am) in complete remission. It's going on 2 month since I got the Rowasa and I still have a weeks supply left, that is how little of the rectal medication it took to have a dramatic effect. Thank you to Quincy and to all those members who repeated that message over and over again on these boards because if I hadn't seen it so frequently here, I would not have fought my GI so hard to get it.

MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 641
   Posted 2/22/2008 4:46 PM (GMT -6)   
Knowledge *IS* power! Great to read, ioscan -fnk.

Yes, Quincy, your mantra has really caused a lot of healing around here -- including me! Kudos to you!

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


quincy
Elite Member


Date Joined May 2003
Total Posts : 30842
   Posted 2/23/2008 3:23 AM (GMT -6)   
ioscan -fnk....It's difficult to read that your doctor gave you such a hard time regarding the rectal meds...especially if he's a GI. I don't get it since they've been around for a long time.

Maybe it's because he has a fear of them himself?

I hope you can get refills...and that it doesn't take another year for that to happen.

You might have to look for another doctor....

Kudos to your persistence.



Mitz..I'm happy to hear they're working well for you in conjunction with your other meds.

Be well,
quincy
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~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 !!!


Sharann
Veteran Member


Date Joined Sep 2005
Total Posts : 778
   Posted 2/23/2008 9:43 AM (GMT -6)   
Thats great!
I have had the opposite prob in the past. "Your disease is prdominatly in the lower colon and sigmoid/rectal area..." They never wanted to give orals, said that the disease was low down. WRONGO.
So, what did the doc thin, you would be a rectal med junkie? They can be stubborn the docs. When they are believing one
thing and they are wrong, they get nuts. YOu are right to keep asking for them. YOu just march in there armed with knowledge. Tell him
to humour you!
I am a Certified Doxie Lover(Weinerdogs)


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 2/23/2008 10:52 AM (GMT -6)   
Sharann -- "rectal med junkie" is the funniest! Thanks for the laugh. I can see it playing out in the doctor's office like this: "I'm not addicted to Rowasa! I can stop anytime I want to."

Quincy, I can't figure out why so many doctors are so quick to put people on prednisone but won't first insist that they try rectal meds. So frustrating.

To add to the success stories this week due to rectal meds, I just stemmed a flare using cortifoam twice a day for 2 weeks. Now I'm down to using it once at night and doing just fine. Hooray.
-------
UC for the last ten years
Current Meds: 6MP since 2006
Past Meds: You name it; I've tried it.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30842
   Posted 2/23/2008 2:52 PM (GMT -6)   
LOL Sharann....good one! Can never figure out some doctor's motives.

Julee, awesome you're doing better...if your symptoms are continually A-OK for another 2 weeks, go to every second night.

Regarding the pred...I think part of it is the desperation of the patients..they want to feel better quickly, but the pay-off of tapering is sometimes pure misery. The oral/rectal combo to be tried firstly is a slow process...one many/most patients (as per my doctor) get tired with eventually. He's not one to prescribe pred unless it's necessary. I don't know when he prescribes the immunosuppressants/biologics..never asked but will at my next appt in May.

Be well,
quincy
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~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 !!!

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