I finally spoke to a J-poucher

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.

---

Mark & Megan
7 yrs UC to 1 year J-Pouch

Surgery Photo & Journal below: http://ucstory.wordpress.com/

We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!

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.

:)

---

My bum is broken....there's a big crack down the middle of it!  LOL  :)

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

---

                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       

            http://www.myspace.com/martybuzz1<FONT]

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.

---

--Mom of bratcat (17 years old)--

Daughter bratcat was diagnosed with pancolitis October 2006

Current meds:

Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade

11/14/06 - started prednisone; 1/28/07 - finished prednisone!

3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery

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.

---