Ok, I have UC. I am embarrassed about it and therefore can't really convince myself to talk to people about it.
I am possibly going to continue with Remicade but the cost is beyond my means so its kindof up to Trillium.
I may need surgery, a pull-through? I am scared, I have read good and bad things about it.
I want peoples opinions on it, the pros and cons. For those who have had it, would you suggest it?
Thanks...

There are plenty of posts on this web board that address your specific question. It gets asked here a lot. And everyone who has been able to "choose" whether or not they should have the surgery has had the same question. This is a great place for some honest answers that surgeons sometimes just sort of dismiss.

At any rate, it's understandable that you are emabarassed about your UC. Society doesn't like talking about poop (unless you're Oprah and then it's ground-breaking (whatever)). And society definitely doesn't like talking about bloody explosive poop. It mostly stems from misinformation. The best thing you can do fist of all is decide to have a sense of humor about it. There are a lot of really funny stories on here that I'm sure you can relate with.

Second, you didn't mention asacol, pentasa, 6-mp, or any other drugs. Are you seeing a gastrointerologist? Why is remicade the only opition for you? Before you have surgery, you should feel confident that you explored the other options. That's just for your own sanity. You will have to be your own advocate when talking with doctors. Meaning, you need to know what options there are. If your doc dismisses the things you say, then you might consider a second opinion.

I bring up the first two points because for me, surgery was my last option, and I could not have gotten through them without being sure of my decision and being able to laugh at myself, my situation, and the ignorance of other people. For me, surgery has been the best thing. I have not regreted having it since I began to fully recover nearly three years ago. But the first year is tough. The first six months are really tough. The first month is crazy tough. And the first week is wicked tough. The surgeries, the doctors, the complications, the pain, etc... So much negative can be said. But the majority of people who have this surgery have a better quality of life, with less pain, less bathroom visits, and less risk for colon cancer.


Good luck! Like I said, this is a great place to get answers and encouragement.

Having done it myself, I don't recommend the pull through (if by that you mean ileo-rectal anastamosis) for patients with UC. That is because you can continue to battle UC in the rectum. That was the case with me, and I eventually gave up and got a j-pouch.

Keep reading this site and you will find lots of good info on the surgery.

-Kenadi

Mela, I had UC for over 20 years, and I understand how you feel. My family never knew how bad my UC was. I never met anyone that had problems like I did until I found this site. The wonderful people here helped me through a very dark time in my life. You,ve found a place where you don't need to be embarrassed about asking questions. There are so many people here to help, and we've all been in your shoes.

I had my surgery 4 years ago, and it's the best thing I ever did. My life has been so much better. The most important thing is to find a surgeon that has done alot of these surgeries successfully.

Like Kenadi, I'm not sure if you mean a pull through or the j-pouch. You need to know exactly what type of sI urgery you are going to have. You should be prepared for it all, the good and the bad.

So, ask away and get as much information as you can. Good Luck,

janna

I know it's not easy to talk about UC. It's the reason most people didn't know I had it, then all of the sudden I was having surgery and they were like "I didn't even know you were sick."

But I was lucky to have quite a few people, more family but a few friends, that were curious. Especially about the surgery process.

You'd actually be surprised once you talk about it how many people actually have issues with their bowels. I have found it easiest to bring up UC when people complain about the after effects of drinking too much beer or the flu. I'd say "Welcome to my world" but without all the blood. And they would begin to understand.

As for surgery, I would do it over in a heartbeat and I wish I had done it sooner.

I pretty much went into the surgery blind and found this group after but there is an amazing wealth of knowledge you can tap into.

I wish you the best of luck in coming to a decision. I hope you find what works for you!

I agree with having surgery and wish I would have done it sooner. Just make sure you have a good GI doctor and surgeon. My GI sent me to another GI just to make sure he wasn't missing anything. I appreciated that.

hi everyone.. i am new to this so bear with me. i had an ileostomy 7wks ago and so far so good (apart from hating the bag).i am managing well but am now on a public hosptical waiting list to have jpouch formation which could take a year. (my procedure is being done in 3 stages) i had the 1st operation to remove the colon in a private hosp but my surgeon will not do the pouch formation in the private hosp as she said it is a much more complicated operation? i am devasted as i was planning to get the jpouch in another month or two. has anyone else been told that this stage of the operation is so much more complicated? the first part felt pretty major too so i dont understand? any thoughts? thanks PS whats a pull-through