Hi everyone

HI Susiebuddy

This is a pretty tough choice, I know for me it came down to the surgery or apparently moving into the hospital permanently, which was intolerable at the best of times. The only thing I would have reconsidered is not letting myself get so sick before doing the surgery. It took a very long time to recover simply because I was so nutrient starved going in. It has been an adjustment, but I do appreciate no more meds and the energy I need to hang out with my kids.

Goodluck
Sue
UC2003 many meds, many flareups, ileostomy Feb 2009

hey susie,

A year long flare up sounds like you are not responding very well to the drugs. Don't feel bad because the truth is most of us do not get better with drugs. At best they mask the underlying problem.

What you posted sounds very much like what one of my first GI doctors told me. "You will need to wear a bag for the rest of your life"
He was a terrible doctor that knew very little about modern surgery and seemed like he was throwing darts with all the different drugs he was giving me.
I got so frustrated with him that I found a much better doctor who actually supported my interest in surgery and in the end he encouraged surgery since he did not want to see me suffer.
Don't wait for your GI doctor to recommend surgery because chances are he won't. Most GI's want your business so they will continue to try new drugs on you- but if you kindly ask for an immediate surgery consult then they will usually be more than willing to help you.

let's clarify a few things...although most of us here are not doctors, we certainly have enough experience with this disease to tell you that you have been somewhat misinformed.
number one, jblue is correct by telling you that most surgeons will perform a total colectomy nowadays with UC patients because the disease will likely return and start attacking the rest of your colon.
number two, you would end up with an ileostomy and not a colostomy since you would have no colon.
number three, the ileostomy would not be permanent unless you want it to be. You can have it reversed in the future with a j pouch that functions much like a new colon in due time.

You are a very intelligent person for wanting to know more about surgery but I recommend that you at least give remicade a try before jumping into a major surgery. Most people respond well to remicade treatment and achieve remission for several months. It's very effective at slowing down your immune system and has minimal side effects compared to prednisone.

You want to be symptom free when you have your colon removed so please look into remicade first.
While you are on the remicade you can plan for your big surgery a year from now.

Youtube is loaded with "UCvlog" videos by a young man named Dennis. Those videos helped me make my decision to go ahead and have the surgery worry free.

having UC is absolutely horrible and having a bag is absolutely wonderful! i think thats the easiest way for me to say it, lol.

But really, like mikeman said, you may want to try remi just to get you in remission or at least a little better because the healthier you are going into surgery the better.
I tried remi it worked for a few months then nothing. When i went into surgery i was in pretty bad shape. And still on pred. If you can help it you do not want to be on pred when you go in.

Your GI is telling you something odd by saying you need a colostomy and having the diseased part removed. If you go to a surgeon make sure you get the correct info, because like everyone said, UC will just come back if you leave colon there for it. A colostomy is where some of the colon is left behind and then an ileo is where it is all gone.
Most people get jpouches. I chose a perm ileo, cause i didnt want to do 2 surgeries and worry about the jpouch failing at some time (which is rare) and honestly i didnt ever want to use the batrhoom again!

Having a perm ileo is nto bad, its rather convenient, takes about two minutes to empty and clean when you go to the bathroom. For the first few weeks you will empty alot, but after that its down to probably 4-6 times a day, depending on what you eat.
You wear each bag and flange for about 4-7 days, then change it, takes about 10 minutes once you get the hang of it.
It wont keep you from doing anything at all. trust me i do all kinds of crazy stuff, lol. and noone will know, i promise, unless you tell them. My closest friends who i literally slept in the bed with at times (not like that, lol) and gone swimming with and all kinds of stuff didnt know for over 8 months until i finally told them, and then theydidnt care!
Anyway, i dont knowif i helped any, i tend to ramble, lol.

Hi;
I had Ulcerative Colitis, it started in one section and ultimately spread to the entire bowel, so I made the decision to have it removed, the GI I was seeing at the time didn't like putting people on Prednisone. I had an ileostomy for almost a year and made the decision to have the Jpouch , which I have had for almost seven months now and am very happy with. The surgeon said if it doesn't fail in the first year, I should be good for twenty years. So far so good and I feel great, which is wonderful after being miserable for so long. Also, it is wonderful not to have to take medications. I have no physical restrictions.
Linda