manyy say they where never told that uc would be cured I was told by doctors and a few others have been told it was a CURE.. plus here is info that is out there where they also say its a cure........


http://www.healthscout.com/ency/68/233/main.html#Defini...ammatoryBowelDisease


Just wish they stop saying its a cure ,for some maybe but not everyone.

Very misleading. Downright incorrect for some individuals.

Cure? Eh...Drastic improvement? Yes! And that's not even true for EVERYone...Ya know, I just think, okay, how can they "cure" an auto immune disease just by removing the organ it effects? Sounds good in theory, but...I think we're gonna have to get into major genetic manipulation before any "cures" arise. Just my two cents...

I think that there is a misconception about what they mean by cure. UC is cured by colectomy because the colitis goes away with the colon. Most of us do not have extraintestinal symptoms that persist after colectomy. Some of us do, but those are not ulcerative colitis, only associated diseases.

Pouchitis, cuffitis, etc. are not UC (well you could argue that cuffitis IS a form of UC, but in a very minor way). Most of the problems we have post surgery are not UC, but complications, although having UC will make us more susceptible to some complications.

Yes, I know it is semantics and they should do a better job of describing how living without a colon is not like it was before you ever heard of UC. For example, if you have lung cancer and they remove your lung, you may well be cured of that cancer. But, you now have new issues to deal with because you only have one lung. See the difference? Probably does not help much because it is the doctor's job to help you understand those differences and after the fact, is a bit too late.

Jan

I like how Jan just put her analogy about lung cancer and the way she said it is true. I was diagnosed with cancer of the large bowel out of the blue with a 55 year colonoscopy, no symptoms even. I was told there were so many polyps and three had already turned cancerous. So the "CURE" is to remove the colon and my choice at first was permanent ileostomy. I researched myself for a J-pouch and found someone who would do this for me. I didn't think I would get pouchitis as I wasn't a UC patient....wrong, I'm now a Pouch patient so yes, I can get pouchitis. This is a new dilema for me and I'm learning I too need Probiotics since my system is now so short and more susceptible to what I eat also. Learning curve. So in theory removing the colon is a CURE, but now there is a new medical problem...but would I want to be an ileostomy patient??? Hindsight says NOT YET....but at least I know it is an option. Living with an ileostomy can be hard work, but the good things would be being able to eat anything you want and not always looking for the closest bathroom. I'm lucky that I don't have any stomach pains like some of you have...I feel for you....just the BB and extra 8 bathroom trips a day bother me....I'm glad that some are doing so well and hope I will join you. I'm hoping postive attitude works here also....I really want this to work as we are retiring this year and want to do an 8 month motorhome trip starting end of the summer....right now, that feels really iffy. I need my bathtub daily, but have learned to look into a sitz bath to use in the motorhome. The information here for us newbies is really good, thanks for it and bless all that are struggling... Karen

Just was putting it out there because they make it sound so good to get the surgery and my doctor and every other doctor said go for it you will be cured and in a year you will live life as you did... now 14 months later.

I understand its an option but they should give us more info on it instead of sugar coating it... I had jaw surgery at 14 they told my mom piece of cake no worries at all I nearly died from bleeding to death yes I know that can happen in surgries but they should be more blunt about the dangers to your face not every one reads up or can even get the info to young to understand or what ever.



I just like honesty and some people just can not do it.. They should say this is the complications to the surgery and % of each problem etc etc .

They also should say there is always.. a chance you never had uc etc just my 2 cents.

Its like me i'm a auto mechanic how many folks hate them because they feel cheated???? I hear that all the time and you know I been honest with everyone known for years I have told people that are is junk not worth fixing because of all the problems and give them an option.. and what may happen if I FIX IT SOMETIMES I OPEN A CAN OF WORMS ! but I'm up front with people and I expect that from everyone I deal with ..

I fix cars that most auto techs do not I specialzed in hard to find problems and such and sometimes I have to let the person know the complications that could happen and yes cars have that happen no matter what you do...

I use this as an example alot because I feel its close enough to every day living and things we deal with.