my sigmoidoscopy experience.

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lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 7/9/2009 12:23 PM (GMT -6)   
Well, It was no fun.....Not so painful, but the pressure was awful.  I looked pretty bad as i expected.  I told the doc I wanna have my colin removed, half kidding, and he agreed with me it might be a good idea.  I was surprised in that i have only used 5asa drugs thus far.  He wants me to up my pred to 40 mg ....which i was almost done tapering off of.  I don't know if i really wanna do 40 mg....i have been on it for several months.  He said he can set me up a consult with the surgeon.  GI wants to see me again in 2 weeks.  I will use this time to really think about the j-pouch.  I can think of no good reasons not to do it.  I hate the thought of a lifetime of meds that may or may not help or give me brief remissions. 

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/9/2009 1:24 PM (GMT -6)   
Well, that's been my experience (lifetime of meds, only helped some until Remicade). What about Remicade? Apologies if you already discussed it. But it was my choice over surgery or continuing to tolerate regular (seasonal) flares. I'm very happy with it.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/9/2009 1:25 PM (GMT -6)   
I am sorry about your results. And I can completely understand not wanting a lifetime of meds. I am on Humira and I do worry about the long term effects of being on it that they just may not know about yet.

I'll say a prayer for you for clear thinking about all of this. I know it is a tough decision-one I can not imagine facing at this point.

Things WILL get better, one way or another!

I did want to add that while I do worry about the effects of the Humira, it has given me my life back.  I don't know what the norm is for bathroom visits after a j-pouch, but on the Humira (and Asacol, with Canasa suppositories for any problems that might come up -like antibiotic use and such that cause bleeding), I am going once or twice a day-completely normal, no D, no urgency, and typically, no blood.  I am really like a normal person again.  I know it isn't approved yet, but I also know Remicade is a good option, and some insurance companies will cover Humira, if not at first, after other options have been tried and failed.  And there are trials, like the one I am in.  I am not sure if you are interested in any of these meds (and I would understand if you aren't), but wanted to share my experience.


Laura
 
34 years old, stay at home mom of 2 girls, ages almost 4 and 2.5
 
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Off of canasa because of severe joint pain (side effect)

Post Edited (Supa) : 7/9/2009 12:29:34 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 7/9/2009 2:00 PM (GMT -6)   
lucas...have the 5ASA meds included rectal..or just oral? If not rectal, maybe thats an option as well.

q
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 7/9/2009 10:58 PM (GMT -6)   
yeah quincy, i'm on nightly rowasa. Doc says it should have given some healing, but apparently not doing anything for me.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 7/9/2009 11:09 PM (GMT -6)   
I hope you feel better and would investigate Corti Foam for a rectal med since the rowasa doesnt work
Dx'd with moderate Pancolits 05/07 better with Pentasa and Cortifoam.
I also take Probiotics, Curcumin, Benefiber and cannot tolerate
artificial sweetners (never could even before UC).
 
 
UC Forum Co-Moderator
I am not a healthcare provider. I am offering support and guidance based upon my own conclusions and/or research. ALWAYS consult with a qualified healthcare provider.


lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 7/9/2009 11:24 PM (GMT -6)   
bbc,
He said it would not work any better than rowasa....and better to just take pred orally.

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 7/12/2009 6:27 PM (GMT -6)   
lucas, I do get the feeling from your post here and on ostomy board that you're of a mind to have the surgery. Check out http://www.jpouch.net/about-jpouch-dot-net/ to read about various peoples personal experiences with the surgery, including photos of their stomas, scars at various stages of healing, etc. Exploring that site made me a lot more comfortable with my decision.

Like you, it was during my last flex sig a few weeks ago that I mentioned "maybe I should just get the surgery" to my GI and he totally agreed. I DID try Remicade for a couple of years, and even if I end up with the surgery those couple of years of near-normal after a year and half of shear hell were important in letting me come to terms with having the surgery. I get the feeling you're already there even though you didn't run the whole gamut of available medications.

There is A LOT of information available at all sorts of web sites about all the surgical options, knowledge is power. Do your homework, find doctors your comfortable with and forge ahead!

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed)

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/12/2009 7:18 PM (GMT -6)   

Well, I am now using Cortifoam - two to three times a day.  It is working for me and Rowasa for 10 days did nothing (but only used it once).  So, I have to say for some of us - steroid enemas and foam work better than mesalamines!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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