Changed my name back to sicklygirl

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notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16744
   Posted 6/2/2009 7:26 AM (GMT -6)   
Since decreasing my meds I noticed that things were loosening up and generally getting worse. I decreased slowly but it seemed like even with just a slight decrease I started noticing symptoms. After a week or so of this, I saw some blood on the TP. I am not going often or having urges too badly but I am definitely in worse shape than I was a few weeks ago. I hope this can be fixed by increasing back to the dose I was on before. I went back up to 9 Asacol/day yesterday + Canasa morning and night and things already seem slightly more firm. I am hoping for the best. I am worried of course but I have to stay calm or it will only get worse. I now realize that if I have soft stools, I need to react quickly. I've never been in the position where I had to monitor something like this and I didn't know soft stool alone was this bad of a sign. Sorry for the vent, just frustrated and upset.
 
Hope everyone is doing well. redface
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 6/2/2009 9:00 AM (GMT -6)   
Hey Sicklygirl, bummer about not feeling well; of course you know this is always a good place to vent! I hope that upping the meds keeps you feeling better. Take care and let us know how you are coming along.

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 6/2/2009 10:17 AM (GMT -6)   
Unfortunately, experience is our only teacher. I hope you improve soon.

You could consider retention enemas for the future.

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


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/2/2009 11:53 AM (GMT -6)   
I'll keep my fingers crossed that things improve soon! :)
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 every other night, Culturelle probiotic, and Zoloft (25 mg).


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 6/2/2009 11:59 AM (GMT -6)   
Thank you both. I am trying to think positive!!
 
I will call my doctor and ask about a prescription for enemas if I don't have improvement in a few days.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3670
   Posted 6/2/2009 12:35 PM (GMT -6)   
I'm sorry you're changing your name back!!! I wonder, have you done antibiotics before for your UC? It seems like everytime I'm on them, which has been 3 times in the past 6 months, I've gotten better each time. This past time my blood stopped on Cipro. It's been 3 weeks since being off it, I started bleeding the last two mornings, but today, no blood. I was just wondering if you tried antibiotic b/4 and did they make you feel better? Feel better soon!

Very mild left sided (could have fooled me with the "mild")  UC. Started LDN ON 1/25/09, stopped LDN on 5/1/09 didn't seem to help. Supplements: Probiotics, Cipro antibiotics 4/29 for 8 days seems to be helping, no bleeding right now, advanced inflammation control


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/2/2009 12:58 PM (GMT -6)   
     Isn't it amazing how we learn the signs of the beginning flare?  After suffering with UC for over ten years, I still have NO clue as to what triggers my flares.  Originally, I thought crabcakes and last year I took a bubble bath with dollar store bubbles and the next day noticed sores on the outside of my vaginal area and then the pressure started and mucus in the stool...etc..  Now I am beginning another flare after only seven months off the prednisone.  I never stopped the Colazal or the 6MP and somehow am reaching the conclusion they ain't worth a turd....pardon my French.  Guess I will blame this on eating pizza while on vacation (even though I have eaten pizza numerous times throughout the winter with no ill effects)...OR....some stress over my oldest daughter's situation (long story).  But no concrete sign as to what is causing this!!!!  Oh well, hopefully my starting back on the Cort enemas nightly and Canasa suppositories in the morning will head this off at the pass....doubt it though.
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.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 6/2/2009 1:30 PM (GMT -6)   
Christine, you made me smile. I don't know what to blame this relapse on but I am going to go with my lazy eating habits. I went so far as to drink a soda the other day. The past few weeks, my eating habits have degraded to the way I ate prior to all of my problems because I felt like I was "better". I ate products full of syrups and milks, cheeses, all kinds of no-nos. Maybe the drugs aren't worth a turd but I am too scared to stop! I hope you feel better soon. I guess we are both in the same boat, we don't know if we are going to get better or worse but we are still in the early stages so I am hopeful we can pull ourselves out. I have a lot of stress in my life right now too and I am sure it's not helping the situation any.
 
Miracles, I was on antibiotics a couple months ago, maybe coincidentally, when my stool got really firm (maybe too firm TMI I know). I am not sure if it is related. I had my stool tested and everything came back ok. It wasn't just one stool test either, it was 3 seperate BMs. I also recently had a colonoscopy and the biopsies came back as inactive. I thought I was good for a while.  :(
 
 
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/2/2009 3:34 PM (GMT -6)   
sicklygirl, i am also in the same boat. I was well treated with nightly canasa for first 2 months after my dx..but things have changed since then. Doubling canasa has not helped, started Lialda - 2 per day but haven't seen any difference yet. Have already started thinking what next for me....
Right now -FLARING (after my Rubella vaccination)
Diagnosed in Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks - to start Lialda after 2 weeks if canasa double dose does not work
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also gifted with Hypothyroid & have calicum deficiency family history!
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 6/2/2009 3:50 PM (GMT -6)   
Maybe 3 per day wi help more. I was taking 9 per day asacol and went down to 6 and 6 wasn't enough. I am back up to 9 now. I hope I get back to where I was. My whole body fels worse. I am more tired and my back is giving me trouble. I guess I am just feeling down in general.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/2/2009 4:26 PM (GMT -6)   
yes! i will..if it doesnt get better in a week i will move to 3 per day or call my GI for enemas quincy has suggested.
BTW, how is it going with your canasa during day? i am still little confused...i am not working these days so try to lie down as much as i can to retain canasa for as long as i can, 11:00 am -5:00 evening i try to keep it in...do u also retain it for this long or longer? does it trouble u...it troubles me-i keep feeling bubbles down there from around 1:00 pm..and then once it is out at 5:00 pm i keep running to the bathroom till night. How is it with you?

Wish you get well soon.... we all get better soon :-)
Right now -FLARING (after my Rubella vaccination)
Diagnosed in Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks - to start Lialda after 2 weeks if canasa double dose does not work
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also gifted with Hypothyroid & have calicum deficiency family history!
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 6/2/2009 5:42 PM (GMT -6)   
I am just beginning to have some symptoms so i can keep them in for the whole day sometimes. The worst time of day for me is the morning but usually I go once or twice and I am done. This morning I had some urgency, gas, loose stool and bleeding... This morning I put one in and I ended up having a BM afteer so I probably lost most of it. I hate that, it's too expensive to crap out an hour later. Tomorrow Ill put it in later in the morning if I can.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 6/3/2009 11:17 PM (GMT -6)   
yeah....2Xcanasa daily & 2Xlialda daily.....how long can i go on paying for them...canasa costs upto 1000$ per month & Lialda aound 400-500$-yes my insurance does pay but still there is a lot that goes from my pocket ....uff! they better work...
Right now -FLARING (after my Rubella vaccination)
Diagnosed in Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks - to start Lialda after 2 weeks if canasa double dose does not work
Lialda X2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also gifted with Hypothyroid & have calicum deficiency family history!
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 6/4/2009 6:55 AM (GMT -6)   
That's where the medical system (or lack of) in ths country confuses me. I have no insurance and I am able to get medications for free. I haven't spent a penny in months. I guess you are penalized for being responsible. I do need to get insurance but not so I can get drugs at reasonable cost, so I can see the doctor more regularly.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...

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