I finally spoke to a J-poucher

Oh Sherry, you might be coming to the dark side!!!

It took meeting ajpoucher face to face for me to relent.  I couldn't believe how gosh darn healthy those jpouchers look! 

Sue

"I've had it - time for me to throw in the towel. After finding out that 6mp is not working right for me nor will it ever, I'm not sure if I really want to start Remicade now. Isn't like just putting of the inevitable (sp??)? I want off these drugs, I want to be pain free, I'm tired of going many times in the morning with cramping, pain and bleeding."

The UC Manifesto, haha!

I hear ya' on all of the above. I just want to be able to be again. It's tough to exercise when your medications make you feel so crappy.

I know what you mean! But I still can't help but be frightened/worried that I'll be in that 10% of jpouchers that have complications. I know that if I end up having complications due to the surgeries, I'll be so angry with myself that I didn't stick w/ Remi longer or didn't try Humira.

Here is what I think about worrying the POSSIBLE complications.  We worried about the possible complications for 3 years before making the surgery decision.  We were so afraid that this or that would happen, or that life after a jpouch would be worse.  And NOT A SINGLE ONE of the worries we thought could occur has happened.  I learned the biggest lesson from and that is that worrying really is a waste of time and it is us writing a story creating our own misery.  It is expected you may have some "hurdles" throughout the process, but you know what, you'll deal with those hurdles as they happen, and life will go on. 

As for making that Remi or Humira decision, you need to both listen to your doctors recommendation to try them or not, and 2) you need to do whatever you must to make sure that if you never regret the decision for surgery later - if that means you need remi to help you make the decision then do it.  My doctors were pretty clear that remi and humira may not work for me, but I had to try them because didn't want any regrets. 

What was nice for me doing Remi and Humira, was that it gave both me and my family the time to "cope" with the reality that surgery was coming. And by the first week or so of Humira (my last medicine) we were all so hopeful it would work, and then it was like a switch flipped and we all started prepping for the reality of surgery. It was a really natural flow of coping.  For us those last chance meds. served more than a physical purpose in our decision making process.

There will more than likely be pros and cons to any option out there, j-pouch or even a bag...it's important to remember that everyone's experiance differs with either option so you'd have to have a nice long visit with your GI and go with your gut instincts as to which might be a more suitable option...granted it seems many who are able go for the j-pouch first and if it turns out to be too much of an issue they go for the bag, which you have to remember can come with many of it's own issues as well...So sorry Sherry that you're even at the point right now to even be contemplating either option...best of luck to which ever choice you make and remember in choosing go with YOUR gut instinct.

:)

I'm sorry that things haven't improved Red.I was hoping that they would.You know yourself what the best thing is for you to do. This is a mjor step for you and one i honestly didn't think you would have to consider.
ALWAYS HERE FOR YOU
MARTY

Hate to be a downer, but my problem is my potential surgeon (who is tops in the city I live in) said it's best to have C-sections if you have this, which is fine, but I would prefer not having to have them. I know that probably seems silly but it seems like the more I learn about the surgery the less inclined I am. Possible lines to your stomach to feed you if you don't heal quick enough, lengthy hospital stays, two surgeries - I can't stand being in the hospital for one night.

I think I could deal with the bag if I had to - it's the crap in between. And you move your bowels like 4 to 6 times a day, I heard, albeit with more control. For someone who has gone 30 times a day, yes, that seems like a miracle, but I've also had a few days where I go once or not at all.

I'm at the point where I've had enough of UC. I used to be very proactive in my illness but now I pretend it's not there, basically. I've tried every med out there. Remicade gave me temporary arthritis, Humira gave me pneumonia, we keep pushing my Imuran dose (and I still don't like how dangerous that med can be), I've done prednisone twice and the last time, it didn't even work.

Sometimes I wonder if there's something else wrong with me, since I have never been in remission for the last 8 years I've been sick other than the first lengthy time on prednisone.

I've been flaring since September ... can't get this under control ... have a job where I need to fly by the seat of my pants (reporter) and want to try new things but live in fear, partly b/c of the disease. Also am worried about the increased colon cancer risk. My doctor has basically said we're getting close to surgery ... but I just wish I could be a little more willing about it. I figure if I'm not, that's not good for mental/physical recovery.

And I know practically everybody who's had the surgery is grateful they did. I just felt like this would all eventually disappear, or they'd find a cure if I waited long enough, but it's been 8 years, I'm 27, and want to live my life.

Anybody NOT happy with their surgery?

One of the things we (I) did prior to Bratcat's surgery was get in touch with a patient of the surgeon's who had gone through it. In fact, we did this with both surgeons we looked into. It made it a bit easier to ask questions to people who had gone through the process.

It is definitely important, unless done as an emergency, to be as mentally prepared for surgery as possible. I honestly think that is a strong component to healing. Bratcat has been home for about 24 hours so far from step 1. We are beginning to have questions about recovery that, although the home health care nurse seemed to answer, we will probably ask on j-pouch.org. Might as well ask those that have gone through it! But even Bratcat knows no one answer will fit everyone. She knows to ask questions, listen to answers, and try to see what fits her.

Sorry you have to even be thinking about this next step. Noone wants to get to it. We never expected to be at the surgery point ever, let alone less than 2 years after being diagnosed. For now, if nothing else, you can contact a surgeon (or two) and look into all the possibilities. Our thoughts are with you always.

Thanks everyone :) I just got back from vacation but while I was gone, I was talking to my SIL and I swear some people just don't GET it if you know what I mean. She swears up and down that going to a chiropractor and having my back adjusted just may help alleviate some of my symptoms because of the fact that there are so many nerves that control bowel function. I told her that I was thinking of having surgery so she kept pushing this chiro guy she sees. I didn't even bother to explain to her that seeing a chiro for the rest of my life is just pretty much putting of the inevetible(sp? - why do I have such a hard time with that word???LOL). I wanted to yell at her that my colon doesn't work right nor will it ever. I have been pretty much flaring for 16 years - don't get me wrong, I've had good days and bad days but never GREAT months. But anyway, lol didn't mean for this to be a gripe post. It just frustrated me - which she always manages to do anyway.

My kids and hubby are 100% behind me no matter what I decide. Yeah, I guess you can say I am in the testing stage. I brought up surgery to my MIL this week too and she said she didn't blame me for wanting it. So I know she is willing to support me too - she is such a great MIL I tell ya! :) But I guess I am gauging others reactions to my decision - I knew that my SIL would have something to say about it and to tell the truth, I don't know why it bothers me so. I have to learn to have what she tells me to go out one ear and out the other. She has her own issues that's for sure and she has no right to tell me how to live my own life if she doesn't understand - no matter how many times I have to slap her in the head with it! :)

my mom and dad and husband were supportive, my son was too little to know what was going on, when i told him i would ave poo in a bag, he asked me how winnie the pooh was going to get in there, lol.
My grandma kind of freaked out, but really she was just upset that i would have a major surgery, she wished she could do it for me. I was really worried about my sis, because, like me, she thinks "bathroom germs" are the most disgusting things in the world, we are both so crazy about it, that if a for some reason a plate or cup shoudl go in the bathroom, we throw it away, lol. So i was worried that she woudl think i was nothing but a walking bathroom germ, it took me a while to get over thinkign that. But when i asked her if she would think i was gross, she got mad at me and told me that was stupid, lol. She was just really happy i was going to be healthy. And they all were, i think that's what you need to try to drive home to anyone who is trying to give you a hard time about it. Just make sure they know you will finally be better, and healthy!