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Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4061
   Posted 2/7/2008 2:44 PM (GMT -6)   
Okay, so I've been flaring in various degrees of severity ever since I got UC last January (2007). I was in a really bad flare when first diagnosed. Asacol and Rowasa helped me tremendously. Since about last May, I have only been flaring very mildly...about 3-5 BMs per day...no bleeding...no pain really, except some cramping while going to the bathroom, and mild urgency. During that time, my GI told me the risks of putting me on a "harder" drug like pred, etc. would outweigh the benefits of getting me into a full remission. He also said I could stop the Rowasa, so I did for a while. During Christmas time, I noticed some bleeding, mucous and cramping again. I started back with Rowasa nightly for about a month and the bleeding went away. I just started tapering to every other night a couple weeks ago, and noticed minor bleeding again. So, the past few days I went back to nightly Rowasa. But I saw even more blood today...it still wasn't very much, but enough to drip a few drops in the toilet (sorry, graphic).

I have a call in to my GI, but don't know what he'll tell me. I know what I'm dealing with really isn't that bad right now, but I want to be in a full remission. Any advice? I haven't really played around much with diet or supplements, but it's hard for me to follow most of the diets posted here because I'm vegetarian. I do eat a pretty healthy diet overall. I also just started Culturelle around the time I started bleeding again recently. I still take Primadophilus reuteri. Sorry this is so long.
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)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/7/2008 2:54 PM (GMT -6)   
You could try upping the primadophilus to 2 a day and see if that helps.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/7/2008 3:19 PM (GMT -6)   
I was on 12 pills (4800mg) of Asacol a day and that kept me in remission as long as I took all my meds. Ask your Doc about upping your Asacol.
Beth, 32
Major Flare Sept/Oct 07 ~ no blood since Dec 07 ~ almost normal bm
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday.  Potassium 100mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4061
   Posted 2/7/2008 4:29 PM (GMT -6)   
I'm already on 12 Asacol/day. Thanks for the suggestion though.

I will try that, pb4. Thanks.
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)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/7/2008 5:30 PM (GMT -6)   
I was taking Proctofoam after my last colonoscopy and my bleeding seemed better, then all a sudden, it got way worse even though I wasn't flaring, so I did it less and the bleeding lessened, whenever I tried it again, I bled more...
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


JM
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 2/7/2008 5:52 PM (GMT -6)   
Sara14
I got the inhaler the doctor said I needed to use if I continued to smoke. It is "combivent" It has ipratropium bromide as the main drug and albuterol sulfate as the other drug. Is it helping? I don't know yet since I have been down with the flu for the last 10 days. I have passed the 5 week mark as far as being in remission since starting smoking again. I guess I can assume that I will now stay that way as long as I smoke. I did not smoke that much over the last 10 days and I did notice my joints beginning to get stiff. I then forced myself to smoke even though I was coughing like crazy. It seems I will have to smoke at least 3/4 a pack a day to keep in remission. I also notice a little mucus while I was cut back, but it left as soon as I started smoking more. I have switched to lights instead of regular and have not notice any problems. Thank goodness I am getting over this bout of flu. I took the flu shot and maybe it wasn't as bad as it could have been. I probably will not be posting much on here, but I pray for all of those on here that each of you will get in remission.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4061
   Posted 2/7/2008 6:23 PM (GMT -6)   
princess - So, you were bleeding even though you weren't flaring? Was the bleeding from a hemmie or something? I've never tried the proctofoam or any steroids, but if my GI suggests steroid rectal meds I think I might try them for a short term thing.

JM - Thank you for letting me know the name of that inhaler. I have a regular albuterol inhaler for when I'm around cats and dogs (I'm allergic and get really wheezy and can't breath well). I'm a smoker and it really doesn't seem to help my colitis...oh well, guess that will (hopefully) make it easier for me to quit eventually. Sorry to hear you have the flu. Hope it goes away soon.

My doctor never called me back today. grrr...
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 : 5177
   Posted 2/7/2008 8:52 PM (GMT -6)   
Sorry to read that you're not yet in remission, Sara. It might be that you'd improve on Colazal or Lialda; some UCers get better results with them than while taking Asacol. Also, you could try Cortifoam (10% steroid rectal foam) temporarily if you think rectum is still inflamed; that med does not cause systemic effects like the liquid steroid enemas or Pred over time. When is your next gastro appointment? / Old Hat (nearly 30 yrs with left-sided UC;currently on 3 Colazal daily for maintenance of remission)

quincy
Elite Member


Date Joined May 2003
Total Posts : 30508
   Posted 2/7/2008 9:14 PM (GMT -6)   
Hi Sara..could you possibly have a fissure?
Are you having extra bms and urge/pain/discomfort when you go?

I agree to up the probiotic..you can do up to 3x daily from what I read on the site.

By vegetarian...do you mean complete vegan or do you eat eggs, fish, chicken..etc?

Are you near your period?

quincy
*Heather*Status: mini flare Dec 28... tapered to every second 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 !!!


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4061
   Posted 2/7/2008 9:43 PM (GMT -6)   

Hi guys. Thanks for the responses.

Old Hat -My next gastro. appt. is March 11. I mentioned the possibility of me taking Cortifoam to my GI at my last appt. in Oct. or Nov. (can't remember when exactly) and he said he didn't think the benefit would outweigh the risks since at that time I only had mild rectal inflammation and few symptoms (3-5 BMs with a little urgency). Maybe since I'm bleeding again he will want to put me on it. I will bring it up to him again. Thanks. I will also bring up the possibility of switching 5-ASAs.

quincy - I don't think I have a fissure...it doesn't really hurt like I have a cut when I have a BM, but I do have some increased urgency and a little discomfort and mild cramping, especially when I'm trying to go to the bathroom. I feel like I'm having smaller deposits, too, and more gas with some mucous. One time today, I just had a little blood come out and nothing else. No, I'm not vegan. I still eat eggs, cheese and other dairy products, but no animal flesh (no chicken, fish, etc.). I was taking fish oil pills for a while though occasionally, but stopped. My next period is about a week and a half away.

For now, I will keep up with the Rowasa every night and up my probiotics.


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)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30508
   Posted 2/8/2008 12:31 AM (GMT -6)   
You're still on the Asacol? Try to be consistent and use the enemas for at least a month nightly.

q
*Heather*Status: mini flare Dec 28... tapered to every second 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 !!!


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5177
   Posted 2/8/2008 9:07 AM (GMT -6)   
Sara, if your gastro calls Cortifoam risky, he needs more information about it! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4061
   Posted 2/8/2008 12:25 PM (GMT -6)   
quincy - Yes, I'm still taking 12 Asacol/day and I am very compliant with my meds. Hardly ever miss a dose. I did use the Rowasa nightly for a month consistently. After that I started tapering to every other night. I guess I'll have to go nightly again for a month. Thanks.

Old Hat - Yeah, i don't know how informed my GI is about all our meds, which worries me. I really like him for a number of reasons, (good at listening, gives me a lot of time to ask questions, etc.) but I wonder how much he really knows about UC and all the meds. To be fair, I don't think I mentioned Cortifoam specifically when I talked to him, I think I just said steroid enemas in general, because I couldn't remember the name of the foam. I'm still waiting for a call back from him...but so far today I'm doing pretty well. I'm also wondering if Canasa might help me since I think I mostly just have rectal inflammation. Maybe I should give him some studies on Cortifoam or something.
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)


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4061
   Posted 2/8/2008 12:42 PM (GMT -6)   
So, my GI just called and all I have to say is: W.T.F.! He told me to continue with the Rowasa nightly for a month and see if that helps and said if it doesn't the next step is azathioprine. Ummm...I've never even tried pred or steroid enemas or other 5-ASAs. I asked him about the steroid enemas again and he said he didn't want to try those with me because the more times you're on pred (even enemas, according to him), the more dependant you become on it to get over flares. I told him that I've read studies about short-term usage of Cortifoam helping and he still said he wouldn't want me to do that. Do I seriously need to find another GI doc again? This is ridiculous. I seriously knew more about my meds and UC than he did. He also said i could increase my Asacol, but I'm already on the max. dose. He didn't even know what the max. dose was until I told him!!! Sorry, I'm a little ticked off and annoyed. Oh, I also asked him about Canasa (trying them in addition to Rowasa) but he said since I'm already doing Rowasa and it's the same medicine it wouldn't do anything. Um...I know it's the same medicine, but it's more of it each day. I've seen so many people here doing both, or doing 2 Rowasas/day, so I thought it might help. Oh - he also said mild bleeding isn't a big deal, but my previous GI always said it's not good if I"m bleeding at all and always wanted to get me on the right meds to stop my bleeding. He also said "it doesn't seem like the Asacol has helped you," which is so not true...if he looked at my chart he'd see I was severely flaring before getting on Asacol and it helped significantly. Okay, my rant is over. sorry.
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)

Post Edited (Sara14) : 2/8/2008 11:45:51 AM (GMT-7)


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/8/2008 12:50 PM (GMT -6)   
Um. You have a right to growl at that GI!

I do agree about the steroids and needing more each time. But that doesn't mean you shouldn't try it! I also was going to suggest Imuran/6MP. But to not know what the MAX dose of ASACOL is - a base UC drug!?!? Huh? I've used Canasa and Rowasa before. Canasa in the AM - Rowasa in the PM. What is this guy's issue?
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4061
   Posted 2/8/2008 12:52 PM (GMT -6)   
I don't know...I feel the urge to send him massive amounts of literature on UC and meds. Thanks for letting me vent.
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)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/8/2008 1:36 PM (GMT -6)   
Sorry but your GI sounds like an idiot to me!!!!

I've been on cortifoam (steroid based rectal med) for as long as a whole year BEFORE tapering off of it with absolutley no ill affects or a single side effect from it...I've been on and off cortifoam my entire 16 yrs of having IBD and never once had a single problem with cortifoam, no dependancy or anything...your GI is out of touch.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


weedlewub
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 2/8/2008 1:49 PM (GMT -6)   
Hey, I'm a vegetarian too. Well, not completely - I eat fish only - no red meat or poultry. I was diagnosed in Jan 2006 and have been on and off of prednisone and Asacol ever since. I recently went to a holistic doctor who tested me for several things (there's a post a few down all about it), and he discovered that I am allergic to the soy protein. I eat soy daily. I'm sure you do too. Anyways, it might explain why when on the meds I coouldn't get better. I am going to eliminate soy now and see if it helps. You may want your doc to test for the allergy and see if that could be causing you some problems.
Diagnosed with UC in Jan 2006
 
Currently taking spanish black radish, congaplex, zymex, multizyme,l-glutamine, calsol, protefood, and homeopathic "intestinal distress" drops.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4061
   Posted 2/8/2008 1:56 PM (GMT -6)   
Hey weedle. I've been tested for food allergies (including soy) and wasn't allergic. They found a slight wheat sensitivity though. I hope cutting down on soy helps you. Thanks for the suggestion. Welcome to the forum, BTW.

pb4 - yeah...I don't think my doc. knows what he's talking about. I don't know if I should just ask him if I can have it or what? He didn't want me to.
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)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/8/2008 2:21 PM (GMT -6)   
Sara, your GI may be a nice guy, but it doesn't sound like he's keeping up with the changes in UC treatment theory. I'd certainly want to at least try Balsalazide and a short course of Cortifoam before going to immunosuppressants. It's one thing to take Imuran when you have tried all of the "softer" drugs, but it's totally another when you haven't. And bleeding from UC is never okay. It means you're not in remission, and you can get rid of the urgency if you can get rid of the inflammation.

I think I'd be asking the GI's office for copies of my records and then looking for another doctor for at least a second opinion. That's what I did. The new GI had a lot more aggressive and well thought-out treatment plan, so I stayed with him. Things are changing so fast in this field right now, it's really important to have a doc who keeps up with it.
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


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5177
   Posted 2/8/2008 6:28 PM (GMT -6)   
Tell the gastro that you read some forum comments by Dr. Daniel Present on MedicalCrossfire where he recommends taking a short course of Cortifoam (10 days-2 weeks) to speed healing in the rectum. He likely won't know who this doctor is, but he's a professor at City University of NY Medical School/Mt. Sinai Hospital & one of the major authorities on IBD treatment in the U.S. If you read posts by KS1905 (Keith), he's in treatment with 1 of Present's officemates & can attest to how knowledgeable they both are about IBD. / Old Hat

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 2/8/2008 6:51 PM (GMT -6)   
Is cortifoam and cotenema the same thing?
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission
 
asacol 400 mg 3 tabs 3x a day, didn't work
was on prednisone, doc took me off.  Asacol didn't help.
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid,mesalamine enema every other night, Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5177
   Posted 2/8/2008 8:07 PM (GMT -6)   
Munchhkid-- Cortenema is a liquid enema that the patient is usually supposed to take at bedtime & retain overnight for best effect. It contains about 50% steroid. Cortifoam is a 10% steroid rectal foam (looks like shaving lather) that can be used at most any time because it doesn't jiggle around after insertion. It also comes in a small, neat package-- easy to travel with. The liquid enemas are bulky. / Old Hat

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4061
   Posted 2/10/2008 8:21 PM (GMT -6)   
Well, I haven't had any blood all weekend and very little other symptoms. Thanks for all the advice everybody.

Judilyn - Yeah, he is already my second GI. The first guy sucked. I think I am going to look for another new one though (at Mayo), someone with an IBD speciality.
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)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30508
   Posted 2/11/2008 2:49 AM (GMT -6)   
Good to hear you're improving Sara! keep us posted.
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 !!!

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