Ostimies board

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TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/24/2008 7:47 PM (GMT -7)   
I have been reading on the ostomies board, and I must say, those people sound happy!  It is really making me think maybe it wouldnt be a terrible thing to have my colon removed!  No meds, no 20 trips to the potty, no panic attacks..Now I am kinda worried because I cant think of a reason NOT to consider an ileostomy!
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/24/2008 8:12 PM (GMT -7)   
for what it is worth, I think abot that a lot also. in your case, since you just recently got on Imuran, you should probably give the drug some time and see if it will work for you.however, my GI says he has had patients elect surgery in non-emergency situations for quality of life reasons. I totally agree with you that it is a legit consideration.
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/24/2008 9:02 PM (GMT -7)   
we are a happy bunch of people!
I look back at some of my posts on this board, and think, gosh i was so miserable, why didn't i just go ahead? But it isn't for everyone, go over there and ask us questions if you want to know more, we all love to talk!

GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 1/25/2008 9:31 AM (GMT -7)   
More power to you Lori, I think about surgery as a good option a lot and I'm in remission!
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
Eleventh Remicade infusion End of January


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/25/2008 12:17 PM (GMT -7)   
well the dr is giving me levsin and canasa to try to ease symptoms, i guess to give the imuran more time. im sure they wont do any good but i will try 'em
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)


chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 1/25/2008 5:06 PM (GMT -7)   
I think that when you really get tired of the daily grind of UC, surgery is like a no-brainer. In the past couple of days, I have considered cutting my own colon out because I get so frustrated with it. Isn't that sad? :-)
Pancolitis - July 2006
Medications:  Predisone - 5mg ,asacol - 12 tablets per day
Supplements:  multi-vit, calcium, folic acid
My wish:  get off prednsione....been on straight since 8/2006


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2008 8:21 PM (GMT -7)   
it's understandable, i was actually wishing to get toxic mega colon so i wouldn't have to make the decision myself

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/25/2008 8:31 PM (GMT -7)   
summerstorm - I can't believe you said that about toxic mega colon, as I have thought the exact same thing, and thought I was a freak for saying it. my fiance and I were just saying that, in some ways, it would be easier to have a really emergency-type scenario with your UC so that the colon just had to be removed and we would be done. I am so happy to hear that someone besides me has had that thought......

by the way, where do you live?
29/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/26/2008 8:10 PM (GMT -7)   
I live near Hickory, i kept meaning to ask you where you were iin NC but i always forgot, lol.
I know, i always thought it was awful to think that, but I was taking so much immodium i just kind of figured it would happen, and hten i wouldn't ahve to worry about it! although i am, of course, glad that didn't happen, it's much better to opt ot have the surgery. And of course, toxic mega colon i hear is NOT fun, and just to make sure eveyrone understands, i am NOT saying go out and injure yourself!

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 1/26/2008 9:22 PM (GMT -7)   
Hey guys, I'm in NC too. It was a really hard decision for me to choose surgery voluntarily, and I'm still jittery about it now with it coming up so soon. Even with just about 2 years of constant flaring (always in pain, never got below 3-4 bm's a day with urgency and blood at my best) I still find myself hoping/wondering I'm making the right choice. I guess it comes down to taking control of your life, and deciding when you have had enough of it slowly cut away by this disease. I'm having it done at UNC Memorial Hospital if you guys are interested.
Diagnosed Fall of 2004

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (40mg taper)
Asacol 8
Rowasa 1


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/27/2008 8:49 PM (GMT -7)   
oh, Chapel Hill, that's a good place to be, a nice part of the state also.

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 1/27/2008 10:08 PM (GMT -7)   
Yeah, it was either there or Duke (where my GI practices) but their lead surgeon recently left, and he was the doc my GI recommended. Its still a drive from the house (40 mins), so I might get a hotel the night before since the hospital is not allowed (insurance) to keep patients overnight after their colonoscopy (day before surgery).
Diagnosed Fall of 2004

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (40mg taper)
Asacol 8
Rowasa 1


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/28/2008 9:41 PM (GMT -7)   
why do you have to have a scope the day before?
I had my surgery at Presbytrian in downtown Charlotte. It's a pretty nice hospital, i haven't been in chapel hill, but i am sure you will have a good stay, well at least as good as can be expected!

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 1/29/2008 10:56 AM (GMT -7)   
From what I understood from the consult, the surgeon wanted to take one last look at my colon I guess to get "a feel" for what he was dealing with the next day. He has my records and I suppose the video/images from my last colonoscopy in November...but I guess thats not good enough/he wants to do it personally. It sounds like SOP at Chapel Hill, so I didn't bother to argue. Whatever helps reduce the risk of complications you know? It may also have to do with the fact that I'm on steroids and remicade...(scratches head)
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/29/2008 9:18 PM (GMT -7)   
i was on both of those and i didnt' have to have a scope, the surgeon said, i can just look at it once it's out! boy was i glad to hear that!

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 1/29/2008 11:17 PM (GMT -7)   
Lucky you! I think I'm dreading that more than the surgery itself. I guess I'd have to purge my colon either way...what fun. I find it ironic I've had more c-scopes than my father (in his mid-fifties). Soon to change though, I hope. :)
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/30/2008 9:53 PM (GMT -7)   
well you shouldn't have any afterwards, lol.
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