Considering surgery

Im 41 years old and have had uc for 20 years.  I had a colonoscopy done two mnths ago and my gi said i was in remission.  However, I struggle daily to make it to my job which is only a 10 minute drive from my home without having to pull over and go to have a bm in my tub which i always carry in my car, i wear a diaper everyday to work because it takes me ten minutes to get to my office from the parking lot because i have to go through two locked gates.  I have a nine year old and he basically has no life just like me due to the fact that i wont go anywhere other than work because i always have urgency.  My stools are formed and i dont have any bleeding, just abdominal pain daily, and urgency constantly.  Please give me some advice.  Should i have the surgery? 

My gi has me on Asacol 2 3x aday and protonix. My urgency is getting alot worse. Ive missed two days of work now because of abdominal pain and urgency. I wasnt having the pain when he did the scope. Hes not very sympathetic. In fact he just said im in remission and oh yea he also gave me bentyl and said that was for the urgency and ten refills on the asacol and protonix.

With my insurance i can only see the four doctors in this medical group and ive seen them all and they all have the same cold attitude. Your right they have no clue what it feels like to live with this dreaded disease. I once got so angry at one of them that i asked him if he ever had uc and that if they ever found a cure he probably would be out of business. I know that sounds harsh but when you leave your gi's office crying because you feel worse when you leave than when you got there, i think thats a problem. Im so frustrated right now! Thanks for being there:)

Thanks again for caring and giving me advice. I really dont have any quality of life. Im at the point that the thought of making it through work on a daily basis is becoming overwhelming. If one more person tells me this is all in my head and i cause myself to have urgency and go to the bathroom, i am going to scream! My family sees i have no life and its a chore for me to work, yet they still discourage me having surgery. My surgery will be permanent not reversible due to where my uc is located. My faith is even weary right now. Im usually at church tonight but Sunday my flare kept me in the bathroom most of the service so i figure why bother. I know i have so much to be thankful for but i feel so alone im having a really hard time seeing that right now. Dont even want to leave my house anymore! Thanks again for letting me vent and have my own little pitty party.

It really saddens me to read how so many of you have unsympathetic doctors. I have been so blessed to have good docs ready to hand out the pain meds and ready to listen to me, explain things to me, and just be there. I am so sorry for all of you struggling with these docs!!

Almost all my GI's over the years have had this same unsympathetic attitude, especially when it comes to pain. They tend to measure disease activity purely by endoscopy, amount of blood and bowel movement quality. Anyway, I had no pain during my long med-free remission years and yrears ago but in the past 9 years non-stop flaring and constant pain even in 'remissions' (nothing more than veyr mild visible inflammation, normal BMs, and occasionally next to no meds- because I can't tolerate any 5ASAs).

Not that I suggest you get off any maimntenance drug that keeps you in remission (unless it was replaced by something else and/or unless it actually and clearly worsens your UC as unfort. for me is my case) but it is possible that the Asacol is causing your pain- you'd have to cautiously experiment yourself.

Anyway, due to constant pain and frequent need to boost pred, I am banking towards surgery myself, so maybe you'll see me over at the j-pouch site suebear mentions- it is a great and sympathetic sight incl. for those like you and me who are reluctantly shifting over to that view. In the meantime, I hope you solve the quality of life issue.

butterfly-in may of 1999, i took a Z-pack for strep throat, and started having some bleeding, well it wasnt' too bad, and i just dealt with it until after i got married, that was may of 2001, i didn't see a dr or anything, well i did, but he was a jerk, didn't do my scope because he ran out of time.
Anyways, in Jan of 2001, i started having a lot of trouble, and finally say a dr, who was going to do a scope, but something happened and i had to cancel, i dont' remember what. Anyway, after i came back from my honeymoon, i started getting worse, throwing up all the time, and yada yada yada. Well i lost like all kinds of weight, i could pull my pants off without unbuttoning them! that part wasn't too bad, lol.
Anyway, i had to go to the hospital, my blood was down to 7.0 (supposed to be between 12-14) anyway, with some iron pills and getting the bleeding under control it went back up, but dr said it was UC. anyway, i went on immuran and that worked for alittle while, then it just kept getting worse and worse, i just felt sick all the time.
Well i endend up back in the hopstial in 2004, so dehydrated that my skin was so tight my hands wouldnt' straighten out, teaking lots of steroids, all that good stuff, so that got it under control for a short time, but i had already lost three jobs due to this and it was gettingold. i was taking like five immodium a day, and drinking pepto like water. Anyway, i got pregnant and it went away completly, it was great! after my son was born it came back though, with a vencance, i went to the dr and he said, try remicade, and i did, and it helped for a little while, but not much. that was august of 2006, after i had missed a good deal of my son's life, not being able to take him places, i didnt' see his first time in the ocean, lots of things i shoudl have been able to see. when i had gone in aug 2006, i had wanted it out, but he said, remicade remicade, so i said ok. THen in feb of 2007, i said, either you take it out, or i will!
i was in the hosptial again in aug 2006, when i had to stay away from my one year old, who had no idea why mommy was gone.
so in april 2007, i had surgery and life is GREAT now!