New to the forum! UC & Chrons together? Bags? Need input?!?!

I think that diagnosis is vague. They should tell you what parts of your GI tract are affected. Is it proctitis or left-sided, pancolitis? Is it Crohn's Colitis? I think you should see a different doctor and get copies of your colonoscopy reports to have them interpreted. You can also read through them and see whether what you've been told makes any sense. They are usually very technical and difficult to understand. Did you have an endoscopy and colonoscopy? What were the signs of Crohn's?

The person you met, Did she have a j-pouch? That's where they basically make a pouch out of your small intestine and remove the large, this way you no longer have UC. UC is only in the large intestine. if you had Crohn's, the j-pouch wouldn't be an option because Crohn's can affect the small intestine as well.

I haven't heard that people with UC have trouble getting pregnant, in fact, we've had a lot of pregnant members lately.

4 Asacol is a low dose, if it's Asacol 400mg.. The max dose per day is 4800mg. You could try going to the max oral dose and adding Rowasa enemas to see if you improve.

You won't be eligible for an internal 'bag' (j-pouch) with Crohn's of the small intestine; no surgeon will touch that one with a bargepole. That's because the j-pouch is created from the end of the small bowel and Crohn's will attack it. Folks with UC can have a j-pouch because UC doesn't go further than the colon.

I had Crohn's, but with some features of UC as well, I think. However, I was never told I had both and most doctors prefer to stick with a single diagnosis. Crohn's can appear in the colon (sometimes, although not commonly, only in the colon, but UC can never appear in the small bowel.

Anyway, you have plenty of meds left to try and I would try them all. If you have disease in the left side of the colon, you can use the UC rectal meds for that too (ask quincy about rectal meds!). Pancolitis (colitis throughout the colon) is best treated both with rectal and oral meds.

'Cos you have Crohn's and not UC, and it sounds like you have pancolitis (though check this with a doctor), I would do everything you can to treat this medically. Not that having j-pouch surgery is a bundle of laughs, or easy, but at least you don't wear a bag at the end of it.

PS: I should add, it's rare to end up with a permanent stoma (stoma is an opening on your stomach, over which you wear a bag to collect the waste), so don't spend your time worrying about it. Most of the time, the surgeon manages to get away with doing a reconnection or a temporary stoma, but just occasionally there is nothing else to be done except scrap the colon (like in my case).

Post Edited (NiceCupOfTea) : 7/7/2013 7:16:47 AM (GMT-6)

I think you need some more info too, and if you don't want to have surgery it sounds like there are a lot of meds you haven't tried. Since you were better when you were pregnant birth control pills might help you a little. Having any kind of serious disease can make a person less fertile, maybe it is a survival of the fittest type thing. Or maybe its because being sick takes a lot out of your body in the first place. I was told the same thing when I had UC, I even went ahead and got a consult with a fertilty dr, just in case.
Anyway, I do have an external bag, a stoma, and it isn't bad. So don't worry about that. Sounds like you have a long way to go before you make a decision about surgery.