Thank You All for being here! New to the disease...

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wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/2/2007 3:55 AM (GMT -7)   
Hi there!  I've just been diagnosed with UC about a month ago.  I also had a benign, but pecancerous polyp, found near the UC.  We've currently got me on Canas suppositiries & darvocets for the pain.  As long as I take the darvos, I'm D & blood free.  However, I am returning to GI doc today to get me on something oral.  I don't know what she's going to try, but she'd said that I won't be able to take the darvos for pain anymore??? Anyone?  I'm also on depacote for bipolarism.  I have currently all but given up completely on coffee.  I get a swig now & then but no more, as it does hurt.  Soda, limit to one a day.  I just have to have something good!  And, I let it go flat  sipping over a period of several hours usually.  I was such a Java junkie too!  Ouch!
My pain is mild to severe, primarily on left side near hip bone.  Now it's moving to the right side as well...Thus, the request for oral meds.  I just switched primary care physicians, and he's really aggressive & wants to help me get this flare up under control...that's a big help to have a good doc.  Anyway, I just wanted to kind of introduce myself.  And thank you all for being here.  I've been poking around this forum for about a week, and thought i'd share this morning.  Oh, also, I was first diagnosed with IBS with benign, noncancerous polyps, in 2002.  I guess I've graduated!  I also found that stress doesn't help at all! I hope to get through this flare up with the help of you guys, thank you for being here, you've been a big help thus far!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/2/2007 4:08 AM (GMT -7)   
Hi Wildfire, welcome to Healingwell :) I'm glad you stopped lurking and joined the conversations :) IBS doesn't graduate into UC. Many on here have had UC for a long time that was misdiagnosed as IBS for a long time because unfortunately some just don't have a clear cut case. Darvocet in UC can actually slow your colon down too much and in Uc'ers that is not always such a good idea. It can lead to complications. But once you get the flare under control the pain will go away too. It's good that you are getting on oral meds in addition to rectal. Do you know where in your colon your Uc is? Sometimes if we know that we can offer more suggestions. Since they found precancerous polyps, what are they going to do?
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/2/2007 4:26 AM (GMT -7)   
for the polyps, just keep an eye on me, that just means colonoscopies every two-three years. My UC is rectal so far (or proctitis?). Ok, I'll remember about the darvocets...when I go off them, will the D come back? How long for the pain to ease up? Thank you so much for being here!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/2/2007 5:01 AM (GMT -7)   
There are other meds you can try that may work better then the suppositories such as Rowasa enemas or even steroid enemas (Colocort) or steroid foam. The steroid enemas/foam work faster then the Rowasa which is basically Canasa but in liquid form (and reaches higher into the colon). I think there is even a steroid suppository but I'm not sure it's available in the states (I've never used them - so I'm not sure). Usually once a flare is under control, which varies from person to person, then the D, bleeding and pain is controlled. To help stop the D, instead of relying on narcotic pain relievers, you can try fiber supplements. This can help bulk up the stool. Also too, you can try a low residue diet to see if that helps.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/2/2007 5:20 AM (GMT -7)   
Thank you for the advice. I'll talk with the doc today & see what she says...I guess it's a matter of trial & error, to see what works. What are probiotics? How do I get them? I need to go, but I will be back here either later today or before the birds tomorrow, so, everyone, PLEASE, keep the advice coming my way, as I value the advice I'm getting from those with experience. I hope to one day be able to help another sufferer, as you have helped me! Bless you!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 11/2/2007 8:47 AM (GMT -7)   
Hi wildfire :)

Probiotics are good bacteria...basically IBDers and even IBSers tend to have bacterial over-growth which tends to exacerbate symptoms...taking a good probiotic daily and indefinitely (even during remission) helps keep the bacterial balanced in the gut flora...there have even been studies and more awareness in the medical field that probiotics are a benefit to us.

Generally you can get them at healthfood stores, though some buy from grocery stores I'm just not sure how they would compare...the one I use is called Primadophilus Reuteri made by Natures Way, it's affordable and has benefits for lactose intolerance as well...it's about 30.00cdn for 90 caps and only one/day is needed, they have guaranteed intestinal release. I've been taking them everyday for about 4 yrs now and it's been very helpful.

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


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 11/2/2007 11:43 AM (GMT -7)   
The steroid suppositories are called Anucort. Mainly used for hemis.

wildfire - welcome to HW! This board has helped me so much! The knowledge and support are wonderful :)

Sorry to hear about your diagnosis - but glad you found us! See you around :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
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


wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/3/2007 4:04 AM (GMT -7)   
Thank you all for your input!  Doc has me on asocal 3x daily, canasa supp. also, if needed.  We're going to try it for a couple weeks & see how I'm doing.  I'm going to go off the narcotics as well, if  the asocal will help the pain there's no need for something that isn't all that good for me. 
I must've been misdiagnosed 5-6 yrs ago.  Had IBD the whole time, I sure wish I'd known, life would have been different if I'd just known what was wrong with me.  They say my flare up isn't that bad.  But it is spreading & getting worse. 
I will look for the probiotics too, you are the best, I'm so glad I found you!  I feel so much better knowing I can come here & be understood.  I don't get that here at home.  They haven't adjusted to the fact that I have a chronic disease (me either!), and don't really get it.  Heck, I'm still trying to "get it"!  So, I'll keep coming back to talk.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/3/2007 5:38 AM (GMT -7)   
Definately come back anytime you want! How many Asacol are you taking? Is that 1 pill 3x daily? Another website to check out is www.ccfa.org They have great info there and there is a page that deals with only Proctitis too. It takes time to wrap your mind around having a chronic illness but in the meantime know that we are here for you.


 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


ledaebel
Regular Member


Date Joined Jul 2006
Total Posts : 339
   Posted 11/3/2007 7:22 PM (GMT -7)   
Welcome Wildfire!! I have found this group of loving, sharing people to have saved my life physically and emotionally. Its pretty hard to believe you have an uncurable disease. People here have taught me how to live with UC and how to make it better. Our doctors don't know everything. The suggestions of probiotics is a very good one. I started to feel better within a couple of weeks.
  • LINDA
         
Prescriptions: Lialda (on a study) asacol, hycosamine, protonix, synthroid, zyrtec, avalide, nasocort, Miacalcin spray and Trazadone for sleep.
OTCs:  Usana multivitamins and multiminerals, Usana Procosa, Usana Mega Antioxidants, Omega 3, Vit. E,  Healthy trinity probiotics, Calcium Citrate


wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/4/2007 5:53 AM (GMT -7)   
It's 2 asacol 3x day. And yes it sure is hard to wrap my brain around having this uncurable disease! Reading all the things everyone here has written just puts all the pieces of the puzzle together for me. Now a lot of things make more sense. The symptoms, smells, etc.! I thought I was just losing my mind... Now that i've let the narcotics go, the other symptoms are back...yuck! Love you all Lots & lots! TY
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