Would it be worth it?

If things are going well, keep it up. What if you go into remission for 10 years? What if you go for 20 years without a flare up?

Not about surgery, no, but I've only started to really worry about it very recently.

BH-True, but what about colon cancer risk?

These are very personal choices that you need to make with your GI and surgeon and with chatting with many people that have been through it. If you are thinking this way, at all, now is the time to ask your GI for a referral to the best, qualified colo-rectal surgeon in your area. Make an appointment and go and talk and find out all the pros and cons. As you do research, you will find that almost all people who have had the surgery are happy. However, this is very major surgery and recovery is slow and difficult. My son has had the first surgery heading toward a two step (possibly three) J pouch. We have been told to look a year down the road for complete recovery. The other thing to keep in mind is that all surgery comes with risks and, as I said, this is very major surgery. For women, especially, fertile can be an issue. I believe the numbers are something like 30%. There is also the concern of pouch failure, which is low (~5-10%) but is real and would mean a permanent ileostomy. I am not trying to scare you but just to make the point that you need to do a lot of research and figure out what is best for you. It is great that you are thinking about it now, while you are not too sick, and able to take your time learning as much as possible.

Personally, I absolutely hated the fact that my son was on so many drugs. He was diagnosed at 16 and the thought of a lifetime of uncertainty and heavy hitting drugs was really pushing us towards surgery. His quality of life had decreased so much. We spend a lot of time doing the research and then he got really sick and the decision was taken out of our hands. You also need to remember that most of the people, on this site, are here because they are having problems. The ones that have a flare every now and then and need some prednisone and then are fine on their maintenance drugs for ages ( and there are a lot of them) are out living life and not spending time on this site. You should not assume that with time you will get worse.

My best advice is to take your time and speak with as many people as possible and at the same time find the best colo-rectal surgeon that you can. This is a very complicated surgery that has a lot of judgement calls that need to be made during the operation. For someone who does it a few times a week it is not a big deal, but do not let a general surgeon near you.

I wish you all the best. I know how hard it is.

Cathy

Anyone know how age factors into the failure rate of surgery? Personally if I had known how much prednisone and other meds Id have to take 5 yrs ago, I would've opted for surgery off the bat.

It is definetlly worth it! Yes its scary, and yes its hard, but 3 months of recovery are no price to pay for a life without UC!
I was tired of the meds, tired of missing things, and just tired.
I figured my colon didnt want me, why did i want it?
I have a perm ileo (meaning a bag) and that idea grossed me out to no end at first. Then my Mom says, well is that any grosser than having diaherra ( i can neverspell that!) all the time? And i was like, well no its really not, its nowhere near as gross,lol.
As for having children, yes surgery can affect fertiltiy, but you also have to look at the fact that if you have children while you have active UC you will have to take meds while pregnant. And for some women pregnancy means complete remission, i was lucky that way. For others it means horrible flares. FOr me, i went into a horrible flare shortly after my son was born and was at home with an infant and had his little bouncy seat in the bathroom. And missed out on a lot of his lifecause of UC.
So I wish i had done it before i had my son, actually i wish i had done it when i first got sick.
Anyway, its a very hard decision, so good luck with whatever you decide

I thought all that stuff too,but its not. I wear the same clothes i did before, and can do all the things i could before. And my husband doesnt care about it for that.
there are surfers with bags, dancers, world leaders, lots of people you would never know.
But good luck with your decision!

Doz79 said...
Anyone know how age factors into the failure rate of surgery? Personally if I had known how much prednisone and other meds Id have to take 5 yrs ago, I would've opted for surgery off the bat.

I agree with you. It isn't worth it to take all that medication just to have to get surgery later on.

I don't think age is that big of a factor in getting colon surgery until you get into your 80s. Of course, health is also important. Some people are still quite healthy at 80 while others are falling apart.

My son-in-law's grandfather was in perfect health until his kidneys gave out at the age of 96. The doctors would not perform surgery. They said he was too old. He died a month and a half later of kidney failure. I was quite upset, because my future MIL is 78, is extremely unhealthy, doesn't take care of her body, never exercises, is obese, has heart disease, diabetes, arthritis, degenerative eyes, microscopic colitis, and so forth. She had a knee replacement, spinal surgery, heart by-pass surgery and a pig-valve transplant--all in the last four years. They just keep giving her more medication and performing more operations on her. Not surprising, she had a stroke when she got the by-pass surgery and pig-valve replacement. She can barely get out of her chair and is on a ton of medication.

Another reason to wait with the surgery is... possible future medical advancement. Maybe they'll come up with a better way to treat, if not cure UC. Maybe they'll come up with a way to prevent colon cancer. Maybe they'll come up with a better way to do the surgery itself if it comes to that.