Posted 4/4/2008 9:29 AM (GMT -6)
Will be thinking of you!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

Posted 4/4/2008 10:48 AM (GMT -6)
You really have been a trooper, Paul, going thru this study. It will likely work better for you to have time to research doctors & rest up a bit before committing to a new round of appointments. Probably that secretary inadvertantly did you a favor by not being around ... (annoying as that kind of scene can be when a patient is already tired out from exam, etc.)! All good wishes being sent your way. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 4/4/2008 12:07 PM (GMT -6)
that's too bad Paul- I know you were really pinning your hopes on this one. I too was 100% against talking with any surgeon, but when I finally did, I felt better. It's true- knowledge is power. My GI kept saying the same thing to me, about meeting with a surgeon- "This doesn't mean you have to commit to anything, it's just to get more info & look at your options." Of course THAT didn't ring true to me! But really, after talking with the surgeon, I came to the conclusion that "Hey, I could do this surgery!". And here I am, awaiting my surgery date & feeling ok about it. Anyway- take care. I hope things go well for you, & I know you will make the right decision when it's time.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 

Posted 4/4/2008 9:13 PM (GMT -6)
Thanks everyone, I have never wanted to seriously consider surgery before but now I am ready. My GI is located at Mount Sinai Hospital in Toronto. They have a very good IBD department that includes gastroenterology, colorectal surgery, psychiatry, pharmacy, dietary, physiotherapy, occupational therapy, enterostomal therapy, nursing and social work. There website is at:
 
 
I was looking through their site to get information about surgery and their surgeons when I found the following videos:
 
An Introduction to the Pelvic Pouch Procedure
http://www.mtsinai.on.ca/IBD/patient/video/pelvic-pouch-intro.htm
 
 
These videos ar great for anyone contemplating surgery.
 
Take care,

Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 

Posted 4/4/2008 9:36 PM (GMT -6)
That really sucks Paul and I'm sorry about the way things turned out...a real catch-22 since even an occassional colonoscopy can induce flares let alone the amount you had in such a short stint.

I hope you are able to find something to help before you have to get surgery, on the other hand, many whom have had surgery seem to be glad they made that choice but of course there are pros and cons to any decision.

Good luck to you!

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

Posted 4/5/2008 12:00 PM (GMT -6)
Hi Paul....You've been a test subject for us all...it's been encouraging to know what's "out there", but reality always kicks in seeing not all works for everyone.

You've had lots of wrenches thrown in along the way with c,diff, the meds, and didn't think about it..but as pb4 mentioned, the clean-outs and scopes.

I think your decision of surgery is definitely one I would have opted for a while ago. Interesting about the new polyps..good the doc took biopsies.

Keep us updated as to your journey towards surgery.

Hope the process goes smoothly for you. Have you checked out the ostomy forum on HW?

Spring-time thoughts your way....has much of the snow melted there?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Posted 4/5/2008 7:58 PM (GMT -6)
Thanks for the links! I hope to peruse them soon :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

Posted 4/21/2008 12:56 PM (GMT -6)
Paul
 
How are you?  Have you decided on what to do next? 
 
I wanted to ask you - did you ever experience fatigue on the abatacept trial?  Because, mine is extreme. I am too tired to do anything at the moment. Even making myself something to eat is exhausting...  I am not sure if this normal, or just me..
 
Thanks and take care
 
 
Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 3mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 

Posted 4/21/2008 1:53 PM (GMT -6)
KSU,

My symptoms are about the same as they have been for the last few months. Up and down at about 6 to 10 urgent bloody BMs per day. My last and final Abatacept infusion was March 5th and nothing has changed since then. I am currently off all medications. At my request, my GI referred me to a colorectal surgeon just for a consultation. I haven’t made a decision about surgery yet. I’m waiting for the surgeon’s secretary to get back to me with my appointment info. I just called and left a message to ask when my appointment is. They’re not very fast.

I have always had fatigue associated with my UC no mater what medication I was on. Remicade is the only medication that made it worse and that was only after the first infusion. I expected the same thing to happen with Abatacept but it didn’t. I have felt absolutely no extra fatigue or any other symptoms from the Abatacept.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 

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