Here we go again...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ThePostmodernIrony
Regular Member


Date Joined Feb 2007
Total Posts : 344
   Posted 3/5/2009 8:17 AM (GMT -6)   
In october I started going to a new GI who got me off prednisone and onto rowasa and canasa. Now everything is rapidly declining. I barely made it to work today and left about an hour into work because I had to keep running to the bathroom and it was too much. I am very saddened by all this because I thought I was finally in the right direction. I'm going for a colonoscopy on Monday but this is just wearing on me and I'm not happy about it - I guess no one ever is. My GI is the best I've seen and I have confidence in him but not as much confidence that there is an answer. There's been alot of blood and D lately and it has me down and ready to give up on work although I know that's stupid. I know noone has any answers but I needed to say something. Thanks.
UC diagnosed January 05 MAYBE REMISSION AFTER ALMOST 4 YEARS!! - DARE I SAY?
Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, dicyclomine (still flared), Remicade - 7 treatments (stopping because no dramatic changes), allergy shots (03-07), levbid, prednisone (been off since nov. 08!), rowasa
Current meds: Asacol 3 - 3x, Aciphex (acid reflux), canasa every other night, konsyl (fiber for bulking stool), multivitamin, caltrate 2x a day. probiotic (florasmart), astelin (nasal spray as needed for allergies), fosamax (bone density)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/5/2009 8:22 AM (GMT -6)   

has your new GI mentioned any of the biologics? I see you stopped Remicade.... if you don't want to try Humira, & don't want to go back on prednisone, I'm not sure what the doctor could offer you. Too bad, huh? I wish you well! Let us know what the scope shows.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Primal Defense Ultra
Fiber supplement
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/5/2009 8:24 AM (GMT -6)   
Well it might be time to entertain the thought of surgery. This is probably not what you want to hear but it seems you have done all the usual meds and can only find relief with prednisone. I can tell you that surgery is better than quitting work and surgery is 1000 times better than taking prednisone! I am truly sorry you are suffering again and hope your new GI can get you in remission.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ThePostmodernIrony
Regular Member


Date Joined Feb 2007
Total Posts : 344
   Posted 3/5/2009 9:04 AM (GMT -6)   
I have thought about surgery but when I first went to see this new GI he thought that was crazy because I wasn't that bad - so we'll see what he says after he takes a look. Thank you.
UC diagnosed January 05
Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, dicyclomine (still flared), Remicade - 7 treatments (stopping because no dramatic changes), allergy shots (03-07), levbid, prednisone (been off since nov. 08!), rowasa
Current meds: Asacol 4 - 3x, Aciphex (acid reflux), canasa and rowasa alternating every other night, konsyl (fiber for bulking stool), multivitamin, caltrate 2x a day. probiotic (florasmart), astelin (nasal spray as needed for allergies), fosamax (bone density)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/5/2009 3:39 PM (GMT -6)   
You might have the seasonal flare issue. As good as our strategies might work for a while, it might be just plain unavoidable. I was also so hopeful when I was doing better last fall than I had in years...but the season is changing and it's back.

Is avoiding these flares worth surgery? Different views. I never got bad enough for surgery, either, but, geez.
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, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16277
   Posted 3/5/2009 6:26 PM (GMT -6)   

I am sorry you're in such bad shape. I was feeling like I couldn't work a month or two ago when I was flaring really badly. I hope it passes and you can get back to feeling good. I was using Canasa morning and night for a while and that helped me a lot. Maybe you could try using a suppository in the morning? I know it won't help much if you're not able to hold it in but it may be worth a try. Feel better.


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)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 3/5/2009 9:57 PM (GMT -6)   
Sorry that you're having this setback. It sounds like you're Pred-dependent, which is not good longterm. Did you ever use 6-MP? That seems to be what many gastros are Rx-ing now-a-days to get UCers off steroids. Best wishes for your upcoming c-scope. Definitely keep us posted on your situation. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

ThePostmodernIrony
Regular Member


Date Joined Feb 2007
Total Posts : 344
   Posted 3/6/2009 7:37 AM (GMT -6)   
I'm not sure about the prednisone dependency because my doctor seems to think that if i made it through the first couple months, then that is the key time for being able to come off of it. Anyone else hear this?
UC diagnosed January 05
Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, dicyclomine (still flared), Remicade - 7 treatments (stopping because no dramatic changes), allergy shots (03-07), levbid, prednisone (been off since nov. 08!), rowasa
Current meds: Asacol 4 - 3x, Aciphex (acid reflux), canasa and rowasa alternating every other night, konsyl (fiber for bulking stool), multivitamin, caltrate 2x a day. probiotic (florasmart), astelin (nasal spray as needed for allergies), fosamax (bone density)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/6/2009 8:17 AM (GMT -6)   
If you were successfuly able to taper off prednisone then you probably aren't dependent but there are two concerns. One is that it seems to be the only drug (except for Humira) that you can tolerate, and two is that your remission didn't last long (2 months). You do not want to have to continually resort to prednsione to gain remission as the long term side effects, from even a short course of treatment, can be devastating and irreversible. The other concern is the short period of remission you had and not being able to maintain that with 5ASAs.


Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ThePostmodernIrony
Regular Member


Date Joined Feb 2007
Total Posts : 344
   Posted 3/6/2009 8:30 AM (GMT -6)   
Thanks, yea, my doctor is very adamant about staying away form prednisone - so that's good because I feel the same way.
UC diagnosed January 05
Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, dicyclomine (still flared), Remicade - 7 treatments (stopping because no dramatic changes), allergy shots (03-07), levbid, prednisone (been off since nov. 08!), rowasa
Current meds: Asacol 4 - 3x, Aciphex (acid reflux), canasa and rowasa alternating every other night, konsyl (fiber for bulking stool), multivitamin, caltrate 2x a day. probiotic (florasmart), astelin (nasal spray as needed for allergies), fosamax (bone density)

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, June 19, 2018 8:30 AM (GMT -6)
There are a total of 2,973,173 posts in 326,064 threads.
View Active Threads


Who's Online
This forum has 160946 registered members. Please welcome our newest member, bamsch.
454 Guest(s), 10 Registered Member(s) are currently online.  Details
Girlie, Stevo68, ChickenArise, bamsch, cppoly, CAdogsRus, 1039smooth, straydog, Megan Eliz, iPoop