If surgery is cure for UC, why do we take so much medicine and not go for surgery?

I have indermined colitis(it could be crohns). My last visit with GI he talked how we go from 5ASA,6MP(IMURAN),Biologics and surgery.

Since then I am thinking if I have to get surgery ultimately, why not now? I see lot of people who go through surgery are doing well. Most importantly NO MEDICINES.

I might be wrong in my thought process but like to know your reasons. Why are you on medicine and not getting surgery?

Do a search for surgery in the corner of the main forums page. Or click through a few pages on the UC boards here....

this topic comes up a lot.

The order of treatment is usually those 4 steps... but once you get your disease under control - you dont necessarily continue on to the next step.. ever! :)

It is much better to get a biologic infusion/injection every month for the rest of your life, than to poop in a bag or have a faulty j-pouch (which can happen) - - when your symptoms and disease could be controlled so much easier and with less life changes.

Surgery is an option... but most don't "choose" surgery until it is a necessity.
Once quality of life declines and drugs aren't working... that's when I feel it's time to look at the big last step. Until then - weighing the pro's and con's puts surgery on the back burner.

Depends on the surgery and the person...I personally wouldn't want a j pouch either (since I have CD I'm not a candidate for one anyways) my GI threatened an ostomy in my future if the biologics don't get me in a better place (but I'm stubborn and won't go that route). Life just isn't fair, many people are simply born to suffer/struggle in this world for whatever reason/ailment. There are also cons to surgery, not everyone that has an ostomy or j pouch live great non-IBD lives anymore, they often get complications too, so for many it's a lose-lose situation...cuz life stinks.

Surgery is not a cure for Crohns. They really shouldn't do surgery on you, ever, until they can determine that you definitely have UC and not Crohns. I think many with UC hold onto their colons for too long and live miserable lives when they don't have to. Every situation is different.

I'd take surgery over crapping my pants. Would I take all meds available?.....no.

At this point, my meds still work and I'll continue till they don't any longer. 1 - 2 bms daily I can handle, so for me...that's the norm while not flaring and on maintenance meds.

q

I don't even know where to start with this thread....

Surgery is a BIG DEAL, and it does not always go as planned. There can be complications, both short and long term. You miss work or school, it is expensive, it takes a toll on your body. Heck, it could kill you. It is not a decision that is often made easily, nor should it be taken lightly.

Surgery is NOT a cure for UC. Yes, once you are rid of the colon, the worst of the problems that UC causes are gone, but the disease itself is NOT gone. There are many extraintestinal manifestations of UC that can show up at any time....with or without a colon.

"No one wants a bag hanging off of their stomach?" REALLY?!?! This comment doesn't even justify a response. I DID want a bag hanging off my stomach because I did NOT want to suffer immeasurably or die!! And I know someone will come along with the "if you could be healthy OR have a bag, you wouldn't want a bag" Well....DUH! Of course had I never gotten UC I wouldn't "want a bag", but that is just a silly argument to even make in this context.

And there ARE some people with UC that are NOT eligible for the J pouch, so they actually DO have to have a bag hanging off their stomach for longer than a few months. They have it forever.

And then, there are those of us with UC who DID choose to have an end ileostomy, even though we could've gone for the Jpouch. I did not want the risk involved with multiple MAJOR surgeries. I was too sick to keep trying to find the right treatment for me. And honestly, even if I had found a treatment that worked, I probably would've opted for surgery anyway. I would not want to live a life waiting for the next flare, worrying constantly about everything I eat, any feeling that isn't quite right, any BM that isn't totally 'normal'. We all have our reasons for choosing or NOT choosing surgery, and some of us don't have a choice at all.

And yes, I do still have some UC symptoms, even though I don't have my colon. I DO have a bag on my stomach forever, and mucous drainage from my back side. But I have never for one second regretted or even questioned my choice to have ileostomy surgery. I do everything I ever did before I got sick and feel better than I have in a VERY long time.

Sorry, I guess this response got off on a tangent....but for some reason a lot of the stuff in this thread really rubbed me the wrong way.

No one wants major surgery. Having said that, I wish I had my j pouch surgery way sooner than I did. I've been UC free since and no more suffering....ever.

For me surgery would be an absolute last resort. The idea of having you colon taken out seems absolutely brutal to me and a bizarre definition of the word cure.

With all the possible medical treatments and the changes I can make to my lifestyle including diet, exercise, mind body connection etc there is hope. I have had plenty of knock backs in the past but I am determined to find the right balance in my life. I have made lots of progress since my diagnosis 4 years ago.

Obviously there are no guarantees but there are a number of very promising treatments in the pipeline including SSI therapy. Can't think of anything worse than having surgery and then somewhere down the line we see significant advances in treatment.

Because surgery isn't always a success

UCwhat? said...
I don't even know where to start with this thread....

Surgery is a BIG DEAL, and it does not always go as planned. There can be complications, both short and long term. You miss work or school, it is expensive, it takes a toll on your body. Heck, it could kill you. It is not a decision that is often made easily, nor should it be taken lightly.

Surgery is NOT a cure for UC. Yes, once you are rid of the colon, the worst of the problems that UC causes are gone, but the disease itself is NOT gone. There are many extraintestinal manifestations of UC that can show up at any time....with or without a colon.

"No one wants a bag hanging off of their stomach?" REALLY?!?! This comment doesn't even justify a response. I DID want a bag hanging off my stomach because I did NOT want to suffer immeasurably or die!! And I know someone will come along with the "if you could be healthy OR have a bag, you wouldn't want a bag" Well....DUH! Of course had I never gotten UC I wouldn't "want a bag", but that is just a silly argument to even make in this context.

And there ARE some people with UC that are NOT eligible for the J pouch, so they actually DO have to have a bag hanging off their stomach for longer than a few months. They have it forever.

And then, there are those of us with UC who DID choose to have an end ileostomy, even though we could've gone for the Jpouch. I did not want the risk involved with multiple MAJOR surgeries. I was too sick to keep trying to find the right treatment for me. And honestly, even if I had found a treatment that worked, I probably would've opted for surgery anyway. I would not want to live a life waiting for the next flare, worrying constantly about everything I eat, any feeling that isn't quite right, any BM that isn't totally 'normal'. We all have our reasons for choosing or NOT choosing surgery, and some of us don't have a choice at all.

And yes, I do still have some UC symptoms, even though I don't have my colon. I DO have a bag on my stomach forever, and mucous drainage from my back side. But I have never for one second regretted or even questioned my choice to have ileostomy surgery. I do everything I ever did before I got sick and feel better than I have in a VERY long time.

Sorry, I guess this response got off on a tangent....but for some reason a lot of the stuff in this thread really rubbed me the wrong way.

Look, she asked for a response, I gave one. I didn't ask for a response from you, but its nice to know your opinion despite pointing out that the response I didn't ask for wasn't justified.

If anyone gets surgery and is happy with it, thats awesome. Clearly, by the majority of the posts here, you can see surgery is a major surrender, a LAST resort, and one Im not personally willing to concede.

Then you made the right call! Even at my worst, I never have had accidents more than 1 or 2x per week.

Many more people than you think who have surgery for UC continue to have symptoms and are then told that they have CD. I don't think I could handle that, hence my non-surgery choice.
If surgery ever happens with me it will be because I had no other choice.

freddyj said...

NiceCupOfTea said...

freddyj said...
Because no one wants a bag hanging off of their stomach?

Tactful, dude.

And unnecessarily scaremongering, since people with UC don't have to have a bag hanging off their stomach for longer than a few months at most.

Crohn's is another story. Indeterminate colitis won't rule out a j-pouch, but Crohn's nearly always does.

Thats not true, dude.

What's not true? Dude.