I'm meeting with the surgeon today

When I was in a severe flare last year I was advised to meet with a surgeon too. I think it's a good idea to meet with them, even it's just to get a better idea about the whole surgery process, and then weigh out your options.

Hey Pam, good luck with your visit today. I know it can't be easy to wrap your mind around the surgery, but many here have been very successful with it and have gone on to lead wonderful and healthy lives. Keep us updated on what the doc says, and again...I'll be sending good thoughts your way today.

Pam, it might also be helpful to visit the www.jpouch.com site to get some helpful information. Maybe after visiting with the surgeon you will be able to make a plan for getting some help to take care of the baby etc. I know this might sound way off, but think of all the time you are taking off right now because of the UC; maybe getting it over with and getting on the road to healing might save more time in the long run...not sure if that makes sense or not! 

I hope your visit goes well. You have so much life left, and I think it would be hard to raise a family struggling with unrelenting UC. Maybe nipping it now is a good plan.

I would also maybe try switching to Humira, but go ahead and schedule surgery. Then if the Humira works, cancel the surgery! I wish you a lot of luck.

Also, are you still breastfeeding? I think I've read somewhere that SOME women who flare after childbirth get better after they quit breasfeeding. It didn't work for me (I hadn't been diagnosed yet when I quit, and I quit due to lack of supply) and it could all just be coincidental, but you never know!

What a lovely way to say that Jen. I concur--you're ready when YOU'RE ready, not when your GI has 'given up' on you. I would just be sure to get another opinion from an experienced GI.
Good luck Pam and let us know how it goes!

I believe my Gi said I could not try Humira until it is approved for UC (it must be an issue with my insurance not covering it). He told me he didn't want to do 6MP because it would take too long to work and I am getting too sick to wait for that.

The meeting with the surgeon did not accomplish a whole lot yet, as he is sending the slides from my colonoscopy to an expert pathologist to. The surgeon is not entirely convinced I have UC and not Crohn's, as he said while the whole colon is inflamed, the rectum is not, which is often more indicative of Crohn's. But he did say the bloodwork I had recently makes them think UC more. He just wants to me more sure before talking about surgery. He said I could still have surgery with Crohn's but would have a bag forever. He was a very nice and personable surgeon at least. He also put me back on Asacol. He said sometimes it can not work and then later work and he said I can't just be on Prednisone alone.

So now I wait 10-14 days for the pathology report to find out

Yes, I am still breastfeeding. I don't know if it would help to quit. I have been flaring for pretty much 2 years straight and nothing seems to really have helped much at all. Even on Prednisone, I am bleeding quite a lot and going 15-20 times a day. The urgency is increasing and I can no longer hold it most of the time. I have to run out of stores sometimes if I can't see a bathroom. It is just too much. I have to go to school and an internship like this. I started class again yesterday and had to run out of class several times. I am so worried about what will happen if I don't make it to the bathroom while at school or my internship (which is at court and also requires me to travel sometimes).

I'm also have a lot of issues with the PRednisone dependency. I just can't stay on it. I have too many side effects (high blood sugar, Glaucoma, a lot of weight gain, night sweats, and on and on)

It sounds like you are getting good care, despite your body's being so stubborn.

You might want to consider using adult diapers. I think they would give you needed peace of mind, with the circumstance you describe. You might even find they relax your system just knowing you'll be OK, and you'll have less urgency. I found that would happen even wearing a Poise pad when I was flaring badly.

It took me a long time to learn how to manage with UC. Like never eating right before I had to go somewhere or do something. And making lots of preemptive bathroom visits. Are you doing all that? Sorry you are suffering so, that's a lot of extra stress on you, with so much else going on in your life!

Right after my son was born i went into a horrible flare and i never really came out of it. I was like you never took my son anywhere alone, cause i might have to use the bathroom and what would i do with him then? For the first 2 years of his life that poor baby spent more time in the bathroom than most people do their entire lives!

But i had surgery when he was almost 2 and now he does not have to do that!

Even if you do have crohns and have to have a bag forever, trust me, its not bad, its really rather convienient. I have had a bag for over 2 years, never regretted it once.
Regardless of whether you end up with a jcpouch or a perm ileo, you will be better and able to take care of you family and be happy!

Your last comment makes me think you might be mentally ready for the surgery
--" I'd be ok with a bag if it had to be that way. At least I'd be able to do things again"

Your surgeon sounds like a good one as well, so good riddance to your GI.

I met with a surgeon a few weeks ago and am planning on getting the jpouch surgery over the winter. I have a one-person (me!) business so I am saving money like crazy to cover the loss of income while I recover. I just want to be done with UC. Remicade bought me some time while I got my mind wrapped around the surgery, and I am ready now. Sounds like you know what you need to do to get your life back.

In addition jpouch.org check out the blogs of people who have had the surgery on jpouch.net. Many have posted pix, bags, scars and all ... I found it a greatly informative site.

Meesh