Doctor's Appointment today didn't go to well

As you know I'm on remicade. I was upped to 7.5 every eight weeks on Aug. 4th. I've been on remicade since July 2009 and my last colonoscopy showed sever uc throught out my whole colon this was done in March 2010 no improvement. She has kept me on the remicade because it has helped my symptoms I go to the bathroom 6-10 times a day with no accidents before it was 10-20 times with accidents all the time. Well since they upped my remicade I've had episodes where I go to the bathroom at least twice a week like ten times between 8-12 in the morning. I thought it was the fish oil but it has continued. She said I can't stay on the remicade any long because my symptoms are still bad and I have reactions with the infusion. She said I can't stay on this medication when it isn't healing my colon. As I was talking to her she said why do you have a rash on you face. I said I always have it. I said I forgot to take my zyrtex on saturday and I broke out in a rash all over my arms and chest and face. Oh did it itch. I said maybe that is it. She said you take your zyrtex everyday?  I said your PA told me to if I stop I get a rash and itch. She made me go for blood work and said that she thinks I have lupus from the remicade(i have severe fatigue and joint pain). Then she said if you do you can't go on humira(my next choice) she said you can go on a trial drug that is a spin off of the drug tysabri. She said the only thing is it can cause something like mad cow diesese but you won't know until about two years after taking this.  She said with the new drug it is suppose to stop the white blood cells from going to your colon only not everywhere else like the tysabri does. She said we aren't exactly sure if it will cause mad cow diesese for years. There is no way to know. 42 people got it on tysabri and two died the damage is not reversable. I see her in four weeks to discuss my options. She said if I have lupus and I don't do the try that surgery is next. I scared of that too. I don't want a bag forever. I'm thirty and a woman. I'm scared my husband will think I nasty(he has never been anything but supportive this is in my head) and sugery scares me. But his trial drug doesn't sound good to me. Um I rather have surgery than have a messed up head. if i don't die i will have severe brain issues. I rather have a bag. I said how much time do I buy until I need surgery anyway. she said maybe a year or two if the drug works. Then maybe a new drug comes out. I don't know what to do. I hate this UC. Remicade is scary enough now this. I think surgery is my next option. :( Sorry just worried

You can have jpouch surgery, no bag, empties like a colon. No one wants surgery but surgery gives you your life back. At minimum, while you are thinking of your options, you should schedule a consultation with a CR surgeon. And select on with great recommendations.

Sue

I would definatly do the jpouch but the docs pa said to me last time if you do surgery prepare for bag because if you have problems that will be your only option. I'm worried about getting pouchitis and everything else. The risks during surgery and all that. But that medicine doesn't sound very nice. I think that scares me most. Like my mom said I have a hard time on remicade this is really scary.

WIMOMOFTHREE:

Please don't despair.  You have to put things into perspective.  All of here who are on meds at this point may come to the point where you are at.  The scenario where the meds are not working and surgery is the only real and practical choice.  You certainly are not alone.  Even though I am doing well with the Imuran I am on at the moment I always think that the meds may fail and surgery would be my next step.  I would try for the Jpouch personally and if that failed have a perm. opening on my abdomen.  All I am trying to say is that you are not alone by any means.  All one can do is do their best and it sounds like you have.  Please keep it together and vent as much as you want here, that's what why we are here.

MyUC

If you are sick enough to have surgery, it really doesn't matter if your diagnosis is UC or Crohn's. The colon has to go. So for those who are worried about having a Crohn's diagnosis post surgery it doesn't mean you could have saved the colon had you had a choice. Your best bet is to get a consultation from a top-notch CR surgeon. Most of the horror stories I have heard about involve choosing a less experienced surgeon.

All surgeries have risks.

Sue

I encourage you to get educated about your options. Pouchitis is not treated with 5ASAs or Imuran. And for the majority of jpouchers, pouchitis is an occasional condition. In 9 years, I have had it once. Nevertheless, an ostomy is a good choice and I'm sure you would be happy with anything that gave you a better quality of life.

Sue

WIMOM -
Don't worry about your venting - this is the perfect place to think it all through. We really do understand, and as MyUC said in the other thread - we may all be these some day, so it's not a taboo subject.
Surgery is scary. Heck, I was terrified getting my hip replaced last spring! But if you get an experienced surgeon of fine reputation you should be fine. I can understand worrying about the future, about all the "what ifs' - and again, to use my experience (and I know a hip replacement is a very commonplace surgery these days, not nearly as major as having the colon out) - I was worried about being the age I am and wondering if the replacement hip would need replacing...!
My point is, worry about the future is not always productive. Envisioning the future sometimes helps, and it sounds to me as if you don't want UC to be a part of that future. I would suggest you follow up on Suebear's suggestions, ask some questions at jpouch.org, and - just go have a talk with a surgeon.
We're hear to listen.

My son had his colon removed a year ago for UC and in January had a J pouch built. He is doing GREAT!

The statistics say that, one year post surgery, 95% of people that undergo surgery are VERY happy with the results. There is no drug out there that gives you numbers like that.

Make sure you do all your research on these drugs and in the mean time meet and talk with a top-notch colorectal surgeon. Get all your questions answered.

here's the thing about surgery, yes you MIGHT hate it, it MIGHT be awful, but you KNOW right now that you hate it, you KNOW it's awful. That was part of how i got through my decision. I thought yep, surgery might be a horrible thing, i might hate wearing the bag, but at least i would be able to go places and do things!
I chose not to go the jpouch route, i just didnt want to deal with another surgery, and honestly i never wanted to use the bathroom again, lol. is a bag super fun, nope, but its not bad at all, and after a while ten million times better than a good day with UC.
DOn't worry about looks or that people will be able to tell, i am the most vain person you will ever meet, i admit it, and i was ok with having it. I havent found anything i couldnt wear due to the bag, and noone has been able to tell. And they wont unless i tell them. I see people put off or decide not to get a jpouch because they are worried about having a bag, and that makes me sad, because people are missing out on a better life because of something that they dont have any info about. i was the same way i was terrifed because there isn't any good info you can find unless you find a good forum with good support, and this place was a huge help to me! Ok i rambled
Bottom line, yep surgery is scary, yep it hurts and it takes a while to recover, but the minute you wake up from surgery you will know you are healed, you will feel cleansed. And you will be able to be there for all the things you want to do, like the boat ride and eating the pizza without worrying!
Go for the jpouch if thats what you want, but dont let the idea of having a bag keep you from doing it!
good luck!

yw, and if you have any questions at all, please ask me! i know you are going the jpouch route, but you will have a bag temporarily. And when you start to doubt yourself, and trust me you will, think about the trip to chicago, and the pumpkin patch and all those things that UC causes problems with, and then you will be ok with it again. This sounds bad, but when i was sick, my son had toys in the bathroom, and he had those crayons that color on the wall and are supposed to wash off, well they dont, lol. But i have made a point not to scrub it off, because it reminds me of what he gave up while i was sick, and what i gained from surgery.