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lancelot

lancelot

Hey gang, I've had the C.D. now for 4 years. It's been rough. I have to admit now that I know what I know, I should have taken the remicade route when I first found out I had C.D. as I probably wouldn't have to be getting the surgery that I am in the next few months...and have to take the time off of work for it (and have the scars...good thing for cosmetic laser therapy!).

I'll be going onto the remicade hopefully a month or so after the surgery, and maybe some imuran too.

Just wanted to shout out to those who have the disease and not the adequate healthcare practitioners to aid in your well being...it took me 4 years to find the most educated G.I. team...funny thing is...I met them on the first day of my diagnosis...sometimes we look a gift horse in the mouth? (chinese proverb?).

Also, as a side note, as I'm in a pretty good situation, I'd be happy to assist with information and my personal experiences wherever possible :)
 
P

Peaches

:welcome: Lancelot! Love the screenname :O) Hopefully Remicade will be your "Merlin" and work its magic to keep your disease quiet. Sorry you have to go through the surgery first though. Hopefully it will be a quick recovery. And YES - we welcome your experience and input - the more the merrier!
 
imisspopcorn

imisspopcorn

Punctuation Impaired
:welcome: Sir....Check out the Remicade club thread. A lot of great info and experiences that thread.

Hope to see you around here. Good luck with the surgery. My resection greatly improved my quality of life..For now anyway.
 
lancelot

lancelot

thank you Peaches and Popcorn ;) very fast responses!

your screen names are making me the kind of hungry I can't hope to satisfy without blocking my ileum :( (maybe the 20mg of predisone will help? :p)

Popcorn, how much did they remove? why? (was it preventative, perforated, fistulizing, blocked?) how long did it take you to recover?
 
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Peaches

Hey there...forgot to mention that I have been on Remi for over 6 years now (figured this out recently after reading my medical records) and it has been a great drug for me. Also - had a resection back in 96. They took out 6 inches of my decending colon and the recovery wasn't too bad. I third spaced a BUNCH of fluid right after my surgery which caused me to stay longer than normal in the hospital (9 days), but once I got home and started eating (and BOY did I eat!!!), my recovery was pretty easy. They didn't do the surgery laproscopically back then, so I had an incision that had to heal. Do you know if they will do your laproscopically? Your healing time will be even less.
 
imisspopcorn

imisspopcorn

Punctuation Impaired
I had 6 inches of my terminal ileum removed. It was about to perforate. This was after 3 hospitalizations and 3 CT scans later. I had the the disease for 10 years before needing surgery....It took 2 weeks to feel good enough to drive and the full 6 weeks to feel normal. The pain was a relief compared to Crohn's pain....It is crazy how some people form fistulas and others don't. I never have, knock on wood....I am also on Remicade. It is working great for me. I started taking it in August.
 
lancelot

lancelot

Neato! Thank you Peaches again for following up so fast! Man, feels like home here :)
Sounds like your surgery was quite something else...I'm afraid they will have to get near my sigmoid side because of the dark mass they found on the ultrasound...I'm guessing that because they have to drain or remove the dark mass which is near the sigmoid side, and they want to resect the ileum, they may not be able to do this laproscopically...but my consult with the surgeon who specializes in these types of surgeries is not for 2-3 weeks, I won't know until then. I'm hoping to hell that my body stays well enough that the surgery can wait until my 3 month probationary period is up at work so I don't get canned while in the hospital/recovery.

I heard Remi is quite good, didn't know how long term a person could be on it. How is your lifestyle now? Do you still have a mental list of all the public facilities?

What is normal recovery time if 9 days is too long?
 
lancelot

lancelot

Popcorn...wowzers! 2 weeks to wait to drive! wholly crappers! did you stay at home for those 2 weeks? or take the public transit/cabs to work?
 
lancelot

lancelot

Thank you Tamesis :)

I see your post about the Colonoscopy waiting...if you didn't already know...if they offer you 2 drugs for the colonoscopy, take 'em both if they'll let you (one makes you forget you were there, and the other is like a general anesthetic; it's always nice to wake up and just feel rested) ;)
 
P

Peaches

lancelot said:
Neato! Thank you Peaches again for following up so fast! Man, feels like home here :)
Sounds like your surgery was quite something else...I'm afraid they will have to get near my sigmoid side because of the dark mass they found on the ultrasound...I'm guessing that because they have to drain or remove the dark mass which is near the sigmoid side, and they want to resect the ileum, they may not be able to do this laproscopically...but my consult with the surgeon who specializes in these types of surgeries is not for 2-3 weeks, I won't know until then. I'm hoping to hell that my body stays well enough that the surgery can wait until my 3 month probationary period is up at work so I don't get canned while in the hospital/recovery.

I heard Remi is quite good, didn't know how long term a person could be on it. How is your lifestyle now? Do you still have a mental list of all the public facilities?

What is normal recovery time if 9 days is too long?
Click to expand...
Well, different people have different stays. I imagine I would have been out within 4 or 5 days. That was 13 years ago, so things have changed.

I have been on Remi for over 6 years. I have had no problems with it until about 6 months ago. I started getting a bad rash on my back and chest. It has since moved to my neck and starting to go to my face and in my hair. They say it is related to the Remi. I do not have a list of ALL the public restrooms - but I still have urgency issues intermittently. The first few years were GREAT on it though!! Several people here feel like they are in full remission on it.
 
lancelot

lancelot

awesome! I can hardly wait! In the meantime, I'm going to do the SCD to see if that helps the fistulizing...it'd be nice if the doc gets in there and is like wtf...where is all the fistulizing? :)
 
farm

farm

Captain Insaneo
lancelot said:
awesome! I can hardly wait! In the meantime, I'm going to do the SCD to see if that helps the fistulizing...it'd be nice if the doc gets in there and is like wtf...where is all the fistulizing? :)
Click to expand...
Wouldn't that be nice!? You never know though, it could happen.
 
lancelot

lancelot

*Update:
Been on the SCD for nearly two weeks now, and haven't had ANY gut pain to speak of, then went to a concert last night and sucked back a medium coke...and afterwards 2 a&w mama burgers...wholly crap did I pay in gut pain a couple hours later! Man, this diet is really working! :)

I'm learning how to make things from scratch (ketchup, mayonaise; jam, yogurt; slow cooker meals; next will be the almond stuff...but boy is it expensive!).

I'm reading more books about cooking too...read Elains Breaking the Vicious Cycle book (quite the eye opener). And may not have to have that serious of surgery when it comes time to get things all fixed up for the remicade (who knows, may not even need the remicade!). I can't believe how well the SCD heals the gut, and how fast it happens (for me, after about 4 days, I could start feeling less pain in my guts).
 
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