very confused & excited

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 11/1/2007 8:27 AM (GMT -6)   
hi everyone! So most of you may know by now that I have a total proctocolectomy scheduled for November 14th with perm ileostomy- BUT.... it may be getting indefinitely postponed...!!!! This is what's been going on- my GI doc & myself decided to do a double dose of Remicade on October 15, to get me stable for the surgery. It stabilized me so well that I am currently having basically zero symptoms. I mean, last night I had 3 pieces of peppeoni pizza plus a lot of Halloween candy... & not only slept thru the night, but this AM had 2 "normal" bm's. I have been having no bleeding, soft but definitely formed bm's, no pain, & only going 2-4 times a day. Regardless of what I've been eating! So I have a call in to my GI doctor to see if we can continue the high dose of Remicade, every 4-8 weeks. I am still on a low dose of prednisone- currently down to 20mgs, & in the past when I get off the pred the trouble starts. But I feel like I have to give it a try again- get entirely off pred & see if my body does ok with just the Remicade, Imuran, & Asacol. It's strange...  I have finally come to terms, emotionally, with the idea of surgery. And I'm not kidding myself- I feel that eventually I will have to get this procedure done. However, with the way I'm doing currently, it seems ludicrous to have it done now. Even if I can buy myself 6 weeks, why wouldn't I? Did any of you have similar experiences? Did you go ahead with the surgery even if you were feeling good? I'd love some feedback.....
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 40mgs/day
nothing works anymore.....
surgery date- November 14th!!!!!!


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/1/2007 8:37 AM (GMT -6)   
If it ain't broke, don't fix it. Hope you get lots more time out of the new Remicade protocol.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/1/2007 9:10 AM (GMT -6)   
Eva,

I am so excited for you! This sounds wonderful. I hope your new found health continues and you do not have to have the surgery. Personally, I am with Judy. I would not get the surgery unless your symptoms return!
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 11/1/2007 10:05 AM (GMT -6)   

thanks for backing me up on this, gals--- I gotta go with my "gut instinct", bad pun as it is. Now my GI doctor better back me up too, or there'll be trouble! At least I know that when the time comes for surgery, I'll be able to accept it open-armed. But what an emotional roller-coaster it's been. I suppose whatever doesn't kill ya makes ya stronger. Who knows also- my biggest fear is that I cancel the surgery, and in a week or 2, once I stop the pred, BOOM!!!! Hi again, nasty old UC...... but if that's the case, well then, "Hi again, friendly surgeon!".


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 40mgs/day
nothing works anymore.....
surgery date- November 14th!!!!!!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/1/2007 12:43 PM (GMT -6)   
Yep, I agree with everyone on this topic for sure. You always will be able to reschedule the surgery if you need it .... what an emotional roller coaster you've been on!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/1/2007 8:58 PM (GMT -6)   
yep agreeing with everyone else here!

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 11/1/2007 9:45 PM (GMT -6)   
Ok, I'm going to play Devil's Advocate here. I'm not saying don't delay it, that's entirely up to you, but if you'll need surgery eventually anyway isn't this just delaying the inevitable? The irony is that the best time to have surgery is when you're doing relatively well, which means your body is a bit stronger and will heal a bit quicker, although on the flip side I can understand why you don't want surgery cos you're feeling relatively well. It's a catch 22 situation.

Also, you say "I have finally come to terms, emotionally, with the idea of surgery." No doubt, that will diminish the longer you delay. I'd hate for you to go through all that emotional upheaval again to come to terms with it when you eventually do end up having no choice but surgery.

In the worse case scenario (which probably won't be your case since your doctor seems to monitor you closely) you do not want emergency surgery where they won't have time to site your stoma properly and your body is already stressed enough without adding surgery to the equation.

Just something to consider.


I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 11/6/2007 11:41 AM (GMT -6)   
hi there! I haven't been on the net in a while, but wanted to respond to you, Shaz. I know what you mean- being strong & fairly "healthy" is the best way to go into any surgery. As far as saying I'll need to have it eventually, I truly don't know if that's true. It seems to me, the way things have gone for me in the past, is that I will need surgery someday. But, who knows? Currently, I'm having 2-4 bm's a day (mostly in the morning), formed, little to no blood. I'm sleeping pretty much thru the night unless I eat a big dinner. If I were to present to a GI with those symptoms, they would not recommend surgery. That (to me) is mild to moderately active UC. And I do agree that the longer I delay surgery the tougher emotionally it may be. But maybe not? I'm just looking to buy myself some time.... I think the double dose of Remicade has helped a great deal- I'm going into my 3rd week after the infusion, & apparently I could get that large dose as frequently as every 4 weeks. My next infusion is set for 7 weeks, so I'm hoping I can go that long. I just feel that if I can hold out a bit longer, why not? Who knows what types of meds will be available in the future for UC? If the Remicade does fail, maybe there will be something else available then that isn't now. Plus, with the surgery originally scheduled for next week, I would still be on a fairly high dose of pred at that time (I'm on 25mgs/day). I feel like I have to get off the 'roids entirely & see if the Remicade can carry me thru. Sigh..... I do wonder if I've made the right choice, cancelling the surgery. I hope so, & I feel that for now, it is the right choice for me.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 20mgs/day
 


NashRambler
Regular Member


Date Joined Jan 2007
Total Posts : 22
   Posted 11/6/2007 4:48 PM (GMT -6)   
I agree with Shaz. I felt my best I had in years the week before my surgery. But I knew it to, would pass in time. Be at your best health and do what you know needs to be done. Then you can put it all behind you. hehe   Like most folks in here, they all are glad they had the surgery and life is much better now.  
 

Total collectomy and permanent Illeostomy April 2006
Pain free and enjoying life again
Have a Blessed day


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/6/2007 4:59 PM (GMT -6)   
Also, be careful with the Remicade - I was on it for two YEARS, and then it suddenly caused my liver to basically shut down. I almost needed a transplant. And it caused my emergency surgery. This is very rare, but Remicade is a harsh drug.
But I am so glad it is working for you now, and giving you a great Quality of life. If it ever does come down to surgery, you know where we are!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 11/6/2007 6:24 PM (GMT -6)   
I know the meds are frightening. If I chose to go ahead with the surgery now, it would be solely to get off all the meds, no other reason. It's just not enough for me at the moment. I mean, if I become symptomatic in a month, I'll ring up the surgeon & reschedule ASAP. I'm not trying to avoid surgery all together (although that would be nice!), but just enjoying the moment. If that makes sense. But I gotta be honest, I've been enjoying my time on this forum too, so don't think you've seen the last of me! tongue
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 25mgs/day
 

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