Colonoscopy exacerbated UC

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scottg
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/27/2009 3:23 PM (GMT -6)   
Hi All,

I am seeking some advice as my doctor is pressuring me to go on 6MP or other heavy meds for my UC. I have had mild ulcerative proctitis for about two years and then it progressed to pancolitis most likely as the result of a bad C diff infection that I recently had. 30 mg of predisone got rid of the inflammation and then, as I tapered the drug, my symptoms slowly came back (although not as intense as before). My doctor pushed for a colonoscopy and the golytely preparation made everything come back much much worse with 15+ bowel movements per day and lots of blood. Now my doc is talking about my only two alternatives being surgery or a liftetime on one of the heavier meds (if they work). My question is, should I be so quick to go on 6MP or other meds if I feel that the colonoscopy itself is one of the primary causes of my recent flareup? The problem is that I am back on prednisone (40 mg), and since it is working to control the symptoms, its hard to tell if my UC is controllable unless I again try to taper off the predisone. My doctor is really against this course of action and wants to take immediate action. Any advice?

Best,
Scott G

Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/27/2009 3:33 PM (GMT -6)   
Have you tried any other medication besides Prednisone such as Asacol, Lialda, Pentasa?
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scottg
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/27/2009 3:48 PM (GMT -6)   
Yes, I was taking Asacol (3.6 g per day) while I was tapering off of the prednisone, but it seemed to have no effect.

~Scott G

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/27/2009 3:55 PM (GMT -6)   
Well, you have to go back on some sort of maintenance med, whether it be a 5-ASA or an immune suppressant, as you taper off the prednisone. What did you use in the past two years to control your UC? Have you been using any of the rectal meds? They can be very helpful in getting flares under control and in maintaining remission.
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, 40mg 30mg 20mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


scottg
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/27/2009 4:05 PM (GMT -6)   
When I had proctitis the Canasa suppositories worked well, but not after my UC progressed throughout the colon. I was taking the mesalamine enemas for a brief time before the colonoscopy, but there was not enough time to see if it was effective since the colonoscopy disrupted everything.

Thanks for the advice. I am still a bit new at this and am trying to keep a level head since my doctor is laying on the pressure for aggressive treatment.

~Scott G

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/27/2009 4:24 PM (GMT -6)   
I have pancolitis (inflammation throughout my colon) and the rowasa enemas helped me tremendously. Just because the enema doesn't reach the entire part of the colon doesn't mean that it still can't help treat the part that it does reach!
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, 40mg 30mg 20mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 3/27/2009 5:50 PM (GMT -6)   
Hey Scott we're in the same boat. I have pancolitis and can't take 5ASA's. GI is pushing for 6mp and I'm terrified. Terrified of the side effects and that it won't work and it will be on to the next scary drug. We should start 6mp at the same time!
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


scottg
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/27/2009 6:02 PM (GMT -6)   
Hey AMK77. Yes, it's a hard decision. Especially since you describe your pancolitis as mild. Long-term medication is a hard thing to swallow to treat that. Are there other milder drugs besides 6MP? My flares on the other hand were pretty intense so I might not have much of a choice except to take the next step up. But be positive...if the 6MP works then the side affects don't sound too bad from what I have been reading. Most people just complain of headaches and fatigue.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/27/2009 6:18 PM (GMT -6)   
You could try tapering again -- no more scopes! -- and see if you can get back to a mild status, then try other things. The surgery is always an option even on short notice if you can't get better.

I've had many, many flares like you describe and always fought my way back to something manageable, not great. Maybe should have had surgery myself, a long time ago, if I had thought it through, but no doc every pushed it. Now I'm eager to try Humira.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, tried to taper but now back up to 20-30 after several really bad days. Waiting for insurance decison on Humira...soon... 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 3/27/2009 10:27 PM (GMT -6)   
You could try upping the Asacol to 4.8 g/day. That's what I take and along with nightly Rowasa enemas it has really helped get me almost into remission. I still have mild rectal inflammation, but it's a lot better than the severe inflammation throughout my colon I had when I was diagnosed. What about steroid enemas? Not sure if that would help in your situation. Some people have better luck with Colazol than Asacol. I'm sorry you are having to face this decision. I'm scared that I may have to face the 6-mp decision at some point in the future, too.
25 years old; <FONT color=#0000ca nights 3-4 every> Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen


mumbles
Regular Member


Date Joined Dec 2008
Total Posts : 199
   Posted 3/29/2009 3:10 AM (GMT -6)   
I think the docs usually try to push 6-MP way too early. They think you can't tough it out at all. When I was having like 3-5 BMs without blood they wanted to put me on 6-MP. I was like no way, and I started trying to get more sleep, and eating healthier. What do you know it helped. If I was you I would try everything before going on 6-MP. Then again you do not want to get in the predicament where surgery could be the only option. Just look into all your choices and do your homework on 6-MP.
Asacol-12 a day
1 Culturelle
1 Canasa
2 Fish oil supplements
1 Vitamin


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 3/29/2009 3:34 AM (GMT -6)   
Hi Scottg
Have you by any chance tried hydrocortisone enemas or mesacol foam enemas. They are quite helpful. Let them stay in your rectum for quite some time or as long as you can tolerate. They are very helpful in cases where lower portion is more affected as in those areas, oral medications do not help.
Try some alternate cures too.
45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery
"Faith is the bird that sings when the dawn is still dark."
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracl: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."
 

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