For those of you out there thinking about surgery don’t let any doctor convince you this is a cure. If they do, either run out and find someone new, or put them in their place and tell them how wrong they are. Considering I haven’t met a single surgeon who has a jpouch, or experienced pouchitis, they can’t tell you its a cure from personal experience.
There is such a lack of education in that sentence and frankly it’s not the patients fault. I have heard GI’s and surgeons refer to surgery as a cure and I’ve read a boat load of articles that say the same thing and all I want to do is strangle them for flooding the world and the internet with completely false information.
“Well if your disease is only in your colon, and you remove it, doesn’t that solve the problem?”
Daaaahhhh! I am going to speak for most people that I know with IBD (and I swear I’m super close to knowing everyone in the whole world with IBD), and say that our diseases while confined to our colon, absolutely affect other parts of our bodies. Whether its lingering arthritis, skin rashes, hair loss or whatever….its still a result of having UC. Sure, the UC is gone…doesn’t mean it isn’t lingering.
Also…we all still have some of our rectum. Whether that is 3cm or less…that part of your body can still hold UC. It can still flare and cause discomfort. Sure, your whole body isn’t down for the count, but it doesn’t mean it is gone.
And my favorite part of this argument is pouchitis. I am currently getting over a bout of pouchitis and all I can think is that I wouldn’t have pouchitis if I was cured.
Cure. What a dumb word. People…wake up. Nothing has been cured since polio…why? There is no money in a cure. All of you out there hoping for one, hold your breathe until it comes because its not happening. We might get really good treatments in the future…but not cures.
Before I had my colon removed, my rheumatologist said to me, “I wonder if in 10 years we’ll think about colectomies like how we think about lobotomies now”. Which was hilarious and terrifying all at the same time. If I learned anything from that, it was that not all doctors are dumb enough to call this a “cure”. Or to think that removing large organs solves problems.
So here is where you pay attention. A jpouch is not a cure. Getting a jpouch means trading one really huge problem for a bunch of other smaller problems. Keep listening.
I would gladly have my colon removed any day of the week (and twice on sundays). I am SO happy now, and so much healthier but it doesn’t mean that I am cured. I have residual things I deal with, that are nothing like having UC, but they are still there because of it.
I know this is a little scattered but I am so tired of seeing people confused when they hear this isn’t a cure. Or worse, disappointed that they still have problems after their jpouch.
Its not a cure. Think of a jpouch as an extreme form of long lasting treatment.