i am really upset. i waited to have a scope, and they thought they saw a fistula...then i waited to get a ct scan..then i waited for results....the whole time i am in pain...and now i go in anxious for results to find out they can't figure it out! i have to wait again now for another stupid test...this time the gross drink followed by xrays, so they can look for a fistula or whatever again. i just want answers!!! i'm so upset...
and my surgeon told me i should start thinking about whether i want to live like this or get a permanent ileostomy (if they can't figure it out and nothing changes) how can he give up like that? obviously something is wrong because i was happy with my jpouch before and all of a sudden i am in pain, in one spot! there has to be an answer...they just have to keep looking. i'm so frustrated that he would suggest that i do something drastic when there has to be an answer...
and he said it is possible they did see a fistula in my scope that is too small to show up on a ct..or it hasn't burst through yet...so great i am sitting around waiting for the fistula to reach its destination...like one day its gonna hurt and crap is gonna come out of a hole in my butt or somehting...at least then i'd have an answer!
sorry..i'm extremely frustrated with the world today and tired. i dont know how long i can hold out waiting for anwsers. i have to get up all night every night to use the bathroom and it hurts in one spot.

Hi Niki, I can only say that I hope you get some sort of relief soon and that I know what it feels like when you are not feeling well and then are suppose to do all these test. I wish there was a quick fix for fistulas and uc and everything else that haunts us. I hope you have a better evening.

Unfortunately, none of the required testing is quick or easy. Plus, there can be false negatives. When you wind up with a doctor who has nothing left to offer, it is time for a second opinion. However, you may find the same suggestions there too. I think he is just trying to prepare you for the possibility that an ostomy may be a viable option for you at some point, at least a temporary one while this gets sorted out.

I wish I had a magic wand for you, but as you are finding out, medicine is far from perfect. But, some docs are more aggressive than others in diagnostics. When the problem becomes complex, it may be time to go to a large teaching center, where they put all their head together. If you are already there, I don't know ...

But, I know how frustrating it can be to be told to be patient while the wheels turn so slowly... I hope it doesn't go on too long for you.

Jan

Do you have a j pouch or an ostomy or still have everything?

i have a j-pouch... i had 3 step surgery with a takedown at the end of 2004. and thanks for the responses...it is amazing how much posting on here helps me feel better some days...thanks again.
i am feeling a little bit better emotionally today...i do miss sleeping well...that's the main issue.