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RxGirl1979
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/7/2009 2:46 PM (GMT -6)   
I have been on Canasa for over 3 weeks for the DX of extensive UC.  Since starting, my bleeding has gotten worse and I have been having more BM's then before the DX.  I called my MD and he wants me to hold out the full 6 weeks of therapy.   So I need the down and dirty details of anyone elses experience with this med.   So far it sucks and I don't know what to do next..change GI's or fight for a change in meds.   Any info would be helpful.
 
_Tara

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 3/7/2009 3:02 PM (GMT -6)   
     I was on Canasa too but along with Prednisone, Colazal, 6MP, Cort enemas and probiotics.  You most likely need more medications.
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.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 3/7/2009 3:34 PM (GMT -6)   
Hi..welcome to the forum.

You aren't on enough meds...especially since you used the word "extensive". Do you know how far up your UC is?

Call the doctor back and discuss an oral med such as Asacol in conjunction with a retention enema such as Rowasa (I'm assuming you're in the US).


quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


RxGirl1979
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/7/2009 6:32 PM (GMT -6)   

I did discuss oral meds with him and he said he thought that the canasa was enough.   I'm already on Medrol for my asthma, so that may be why he didn't add more.  

He first thought I had Ulcerative Proctitis, but he said after a second look he saw more areas of inflammation further up and called it "left sided"?   I have another follow up with him in a week re: my progress.   He seems determined to get me on Remicade, and I think he's only putting me though this trial to appease my insurance company.   Thanks for the info.


29, Dx'd with extensive UC on 2-18-09
6 mm polyp removed.
Canasa-no response


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/8/2009 8:02 AM (GMT -6)   
Seems too fast to run straight to Remicade.  I would definitely add oral meds - as Quincy suggeted - Asacol or Colazal (Colazal seems to work better for left-sided colitis for many people as it releases later in the colon).  And definitely switch the suppositories for the enema.  Rowasa will reach much further up your colon to help get this flare under control quickly.



Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 3/8/2009 9:56 AM (GMT -6)   
Canasa is no way enough for your extension of UC...no matter what other meds you're on, they won't help your UC.

Yes, oral/rectal 5ASA to start....I would discuss that with him...maybe encouraging him that you want to try them,

Starting on a lower dosage of Asacol...6 daily would be a good number..that in conjunction with the Canasa. Of course, you can stack the Canasa by using one then another...or use two daily, one at night, one in the day.

Many doctors have their own ways of dealing with UC...can be frustrating when the patient doesn't understand or suffers too long because of it.

Talk with your doctor again...please.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~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 : 16277
   Posted 3/8/2009 11:23 AM (GMT -6)   
My UC was not described as "extensive" and I take 9 Asacol a day and Canasa morning and night. I agree with everyone else, you probably need an oral med. You could try increasing the Canasa to 2x a day but I doubt that would help without an oral med if your UC is extensive.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/8/2009 12:03 PM (GMT -6)   
I would also use an enema instead of a suppository and would use an oral med. I definitely wouldn't jump straight to Remicade. It has some potentially serious side effects.
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).


Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 3/8/2009 1:24 PM (GMT -6)   
I would not go with the Remecade just yet. Enemas will get the medication further up but oral meds usually work better in getting the medication where it's needed unless your problem is only in the rectum. You probably need more meds.
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 3/8/2009 4:19 PM (GMT -6)   
     They push Remicade because they get a hefty kick back from the drug company.
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.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 3/8/2009 5:10 PM (GMT -6)   
Whatever the reason for some doctors to place a patient on Remicade...there are some who do believe that if it were used initially, a patient could quite possibly go into a remission quickly (optimist ideal)...., the patient has recourse of discussion to accept or deny biologics, especially if there are first-line meds that aren't even considered.

I stress the same opinion of prednisone.....and that used to be a first-line and still is for some doctors.

Knowledge is power for patients...


quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


RxGirl1979
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/8/2009 8:45 PM (GMT -6)   
i work in Pharmacy and am not running towards the Remi infusions, but after being misdiagnoised for almost 3 years I just want to get back to something sorta normal. pooping lots of blood and mucus 5 times a day is not normal for me. I will take some of your suggestions to my appointment with him next week and if he shoots me down, I'll have my primary give me a referral to a different GI. My WBC is up so I know I am not even close to a remission, but I want to go to a store and not have to wonder where the closest potty is.

I'm happy they finally figured out what was wrong with me, but I just wish they found it sooner. Maybe they could have kept it localized..I don't know. I'm just sad that I can't even go to the Zoo with my 3 year old without running to the bathroom all the time. I should be happy, it could be worse. i'm just having a hissy fit.

_T
29, Dx'd with extensive UC on 2-18-09
6 mm polyp removed.
Canasa-no response


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 3/8/2009 9:08 PM (GMT -6)   
Wow, can't believe it took that long for a diagnosis...curious as to why the confusion?

Hissy fits are fine....and while it could be worse, your situation is bad enough to interfere with your life plans...that's bad enough, and you do require meds to deal with that. No doctor should set you up for failure without treating you properly with meds initially. It would be different if you weren't able to take the meds....then your options would have to be narrowed down. But, at this point in time, it's not the issue.

Regarding changing the location....through the use of oral and rectal meds...enemas would really be the best for you to get the concentration of the med in the rectum and sigmoid...your flares could very well be kept limited. My initial diagnosis was up to and into the sigmoid...but my flares are pretty much now low in the rectum. They're dealt with quickly, but these last few months have I've been impatient and tapered way too fast....I'm back to nightly enemas and will stay on them for a month making sure inflammation is truly kept at bay.

Keep us updated as to how you're doing.

Have you given any probiotics and or fibre supplements a try? Both could very well work in helping your diarrhea. I use Metamucil Orange (not the sugar-free stuff), and taken at suppertime helps a lot to help bulk up the stool. At least that might help lessen bms somewhat.

Do continue the Canasa anyway....it can still be doing some good even though it's not enough alone.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


RxGirl1979
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/9/2009 6:33 PM (GMT -6)   
I had my gallbladder removed 3 years ago and immediately after my BM's changed. I was told this could happen so I wasn't surprised when all sorts of fun things started coming out of me. It wasn't until i had a stupid accident in January of this year and had to examine my BM's that I saw streaks of blood and white mucus. I never had any pain, went maybe once a day. Fully formed, diarrhea once a month. I have this colonoscopy done 2-18 and started the Canasa immediately and things have only gone downhill since. I am on medrol 0.5mg daily for my asthma, so my GI was shocked the extent of my ulceration considering I had been on steroids for almost 5 years.
I might start taking Lactinex to see if it helps until i see the GI. I also take Omega Fatty Acids every night (and Iron now because I'm bleeding like a fountain). I'm just annoyed that the treatment is making me worse then I was before. I dunno. I'll give my GI one more change and if he dismisses me again, I'm off to my hubby's.
29, Dx'd with extensive UC on 2-18-09
6 mm polyp removed.
Canasa-no response


RxGirl1979
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/9/2009 6:40 PM (GMT -6)   
I still am using the Canasa, I am being the good patient. I have been readig about the enemas, and i could be wrong..but you have to hold the enema in all night? I didn't think it was at all possible. LOL. Right about now ( I just had what looked like a crime scene in my toilet) I'm up to try anything.

_T
29, Dx'd with extensive UC on 2-18-09
6 mm polyp removed.
Canasa-no response


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 3/10/2009 1:44 AM (GMT -6)   
Seems that your situation is a tad complicated....but I cannot see being on such a low dosage of steroid to suppress UC.

Hope you do get some relief before you go and see the doc...when will that be by the way?

Scary seeing so much blood in the toilet.....

I wouldn't say that the treatment is making you worse, rather it's the lack of treatment...but your doc obviously has a plan. Do make sure you discuss it fully with him and be prepared with your list of questions/concerns..etc.

The enemas are retention...and I have only had to let them go (on the toilet of course) twice in the 20 years of using them. Not bad. I can retain them all night no problem.
It's only about 3 ounces...which isn't really all that much.

You could also consider a fibre supplement..

The Lactinex seems interesting from what I've read regarding herpes outbreaks..really? didn't do indepth reading, however.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


RxGirl1979
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/10/2009 8:43 PM (GMT -6)   
I didn't know that Lactinex helped with Herpes outbreaks, LOL and I work in Pharmacy! They gave my daughter the granular form when she had some really watery stools back in the day It really helped her I popped into CVS and picked up a bottle and took one tonight already. My appointment is thursday and the blood splatter patterns have gotten worse.

We shall see what his next move is. Thanks for the advice. I don't know anyone who has this, so I have no one to ask questions to. thanks for being here.

Tara
29, Dx'd with extensive UC on 2-18-09
6 mm polyp removed.
Canasa-no response


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 3/11/2009 2:22 AM (GMT -6)   

You're welcome Tara...I'm truly interested in what your GI offers to you next...hope he's receptive to your plight.

This is the site that stated regarding herpes....don't know about truth, however.  I was surprised to see that..

http://en.wikipedia.org/wiki/Lactinex

Hope you get relief soon.

quincy

 

 

 


*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


RxGirl1979
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/12/2009 7:38 PM (GMT -6)   
Ok..had a semi-productive meeting with my GI today. I was put on Asacol 3 tablets three times a day, Rowasa enemas three times a week. increased my canasa to morning and evening daily. I told him i am not interested in remicade unless my options have run out. he did a sig scope today and admitted my inflammation looks a lot worse and there was a lot of blood. I will have another follow up in 4 weeks.

thanks for all your info...
T
29 yrs old., Dx'd with extensive UC on 2-18-09
6 mm polyp removed.
Canasa started on dx date-no response after 4 weeks.
New plan: Asacol, Rowasa, and more Canasa.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16277
   Posted 3/12/2009 8:53 PM (GMT -6)   
That sounds almost like my routine. I don't use the enemas but I have heard they are very effective. I hope you get some relief.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 3/12/2009 9:02 PM (GMT -6)   
Sounds like an acceptable plan...don't get why you're not using them nightly, however, but it's a regimen you can increase regarding the enemas.

Keep us posted as to how you're doing.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/13/2009 3:32 PM (GMT -6)   

Sounds good to me.  I would also use the enemas nightly - but hey - if this works for you - that's great.

Question for you - the nights that you use the enemas - are you doing that in addition to the canasa or instead of?

Hope you start feeling better soon.


Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


RxGirl1979
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/13/2009 4:53 PM (GMT -6)   
No, he told me to start on the enemas three times a week and if my bleeding stops, stay with the plan. If it doesn't, then I'll be using it nightly. The canasa will be twice a day every day. he wants to follow up sooner because of the amount of blood loss and because he said "some people just don't respond to Mesalamine " and he want to keep my discomfort to a minimum. I didnt have a good reaction to the canasa when I started either, so maybe starting the extra Mesalamine slower is a good idea.

so far so good.

-tara
29 yrs old., Dx'd with extensive UC on 2-18-09
6 mm polyp removed.
Canasa started on dx date-no response after 4 weeks.
New plan: Asacol, Rowasa, and more Canasa.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 3/13/2009 7:30 PM (GMT -6)   
     Rx girl...I noticed quincy (Heather) suggested fiber supplements.  Well, personally, I cannot tolerate fiber at all while flaring and your flare sounds exactly like mine was last year...lots of mucus, diarrhea and blood.  Before I was first diagnosed, ten years ago, I took a fiber supplement and WOw did it ever make my condition worse.  So bad, in fact, that I landed in the hospital.  This is not to say you won't be able to tolerate fiber but just be careful.
     Last year, while flaring, I stuck to a low residue diet and I managed it very well.  Good luck!

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.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 3/14/2009 10:37 AM (GMT -6)   
True, not all can use fibre supplements. I do get cramping from some, others not as much. That's why I suggest the Metamucil Smooth initially. I do wish, however, it was not sweetened, but it's worked well for me.

I also think it depends on how often we take them and how much and with what.

q
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~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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