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Changed my name back to sicklygirl

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Ulcerative Colitis
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Posted 6/2/2009 12:26 PM (GMT 0)
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

Posted 6/2/2009 2:00 PM (GMT 0)
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.

Posted 6/2/2009 3:17 PM (GMT 0)
Unfortunately, experience is our only teacher. I hope you improve soon.

You could consider retention enemas for the future.

quincy
Posted 6/2/2009 4:53 PM (GMT 0)
I'll keep my fingers crossed that things improve soon! :)
Posted 6/2/2009 4:59 PM (GMT 0)
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.

Posted 6/2/2009 5:35 PM (GMT 0)
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!

Posted 6/2/2009 5:58 PM (GMT 0)
     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.
Posted 6/2/2009 6:30 PM (GMT 0)
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.  :(

 

Posted 6/2/2009 8:34 PM (GMT 0)
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....
Posted 6/2/2009 8:50 PM (GMT 0)
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.
Posted 6/2/2009 9:26 PM (GMT 0)
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 :-)
Posted 6/2/2009 10:42 PM (GMT 0)
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.
Posted 6/4/2009 4:17 AM (GMT 0)
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...
Posted 6/4/2009 11:55 AM (GMT 0)
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.
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