Posted 1/22/2008 12:14 PM (GMT -6)
I think that meeting with a surgeon is a great Idea.... just because you meet with a surgeon doesn't mean that you have to have surgery, the surgeon might tell you that surgery isn't right for you. When I met with the surgeon he had some requirements for me.... he wanted me to talk to some of his patients especially the ones that had some complications from the surgery, he also wanted me to go to a sperm bank first just incase. He wanted to make sure that I understood that this is major surgery and takes months to recover from, even though he could do it in 1-step and laproscopically.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 

Posted 1/22/2008 12:43 PM (GMT -6)
I understand I am talking to the surgeon today my flares have not been getting better after a week of IV steroids. After the colonscopy I guess we can talk remcade but I will ask how long should I wait until the remicade works so far I have been on everything but remicade but after a week of no results from the steroids I don't see much help in that
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 

Posted 1/22/2008 12:58 PM (GMT -6)
i was on weeks of pill steroids then a week of IV steroids then many more weeks of pill steroids before I got better...was better a couple months, now flaring again...started imuran a couple weeks ago, hoping that kicks in...
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m, multi vitamin, Azathioprine 100m (started 1/9/08)

Posted 1/22/2008 1:06 PM (GMT -6)
I was 42 when I had surgery. Like Keith said, in retrospect I wish I would have had it earlier in my 2 year flare. I lost a lot of living trying to struggle to gain remission.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 

Posted 1/22/2008 1:29 PM (GMT -6)
If you are planning on surgery down the road but are meeting with a surgeon before then ask about Steroid/Prednisone use.... depending on the surgeon and type of surgery, steroid use can make it complicated/more steps.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 

Posted 1/23/2008 9:09 AM (GMT -6)
I'm not sure if you're female, or if having children is a concern for you, but I was just informed by my new gastroenterologist (which my last two never mentioned) that having the surgery will all but ruin your chances of getting pregnant. I have often thought of having the surgery (especially when I'm lying in the hospital), but that completely changed my mind once I had heard that.



----------------------------------------------------------------------------------------------------------------------------
Female, 25
Diagnosed with UC in Summer '00
Currently on Colazal (2/day), Asacol does not work for me even in excessive doses

Hospitalized in Fall '00 - suspected of having megatoxic colon and almost had to be operated on
Hospitalized in Summer '01 - had to have a transfusion because of excessive bleeding
Long history of prednisone use and recently had a bone scan to check for any damage
Posted 1/23/2008 9:18 AM (GMT -6)
There are many women who have successfully gotten pregnant after surgery. You can meet them on the Pregnancy discussion board at www.j-pouch.org

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 

Posted 1/23/2008 9:24 AM (GMT -6)
Olive,

I think "ruin" is the wrong word that your GI chose to use.... You should research it. But surgery may change things, I wouldn't say ruin. The best person to talk to is a surgeon or fertility specialist.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 

Posted 1/23/2008 10:18 AM (GMT -6)
Wish me luck they are starting me on cyclosporine through IV to stop my inlfammation

Has anyone used this does it work?
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 

Posted 1/23/2008 11:04 AM (GMT -6)
I am currently on Cyclosporine. It works very well for me; it is my second time on it.

I'll write more later.

--Keith


DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 

Post Edited (ks1905) : 1/24/2008 8:14:25 AM (GMT-7)

Posted 1/24/2008 12:22 AM (GMT -6)
having surgery won't ruin your chances, there are women on the ostomy board here that are preg now, and have been preg with ostomies, you are far better off to have a bag, or j-pouch, than have active UC and be on all those meds!
in retrospect to the surgery, i wish i had had mine the day i first saw blood, i was 22 then and i wasted 8 years of my life with this stupid disease, in and out of the hospital, i tired remi and it worked for about three months, but even then, i was constantly waiting for the other shoe to fall, for the med to quit workign! Before i stared the remi i was ready for the surgeyr, by my GI said, just try it, i wish i wouldnt' have. ANyway, having a bag is not bad, i promise, in fact most of the time i forget it is even there. Until i just started typing this post i hadn't thought about it in 2 hours probably. It wsant' my life long dream to have an ostomy, but it is so much better than missing my life, and my child's life.
It is a personal decision though, do alot of research. It may help you to look into some famous people who have them, i think that will help you see how having an ostomy will not hold you back, and that you cant' see them!
good luck
Posted 1/24/2008 12:40 PM (GMT -6)
ok im curious, how long were you batteling flares before you had surgery?  Was it a painful recovery?  What about sex, is it wierd having that there?  Is it really better than dealing with UC?  Do you feel good all the time now?

Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)

Posted 1/24/2008 12:56 PM (GMT -6)
I'll be honest I'm advoiding surgery now. I just want this cyclosporine to work so I can go home. Maybe in the future
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 

Posted 1/24/2008 1:23 PM (GMT -6)
Feelfine,

To be honest, if someone held a gun to my head and asked me about Cyclosporine and surgery.... I would rather have had surgery, I would have been cured. Sometime soon I will have surgery. Please realize that 25-40% of UC patients eventually have surgery for some reason or another.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 

Posted 1/24/2008 1:36 PM (GMT -6)
I know I just want to go home

Where do you get the blood tests done?

They didn't mention it yet.

They said when it is done I just go home with meds.
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 

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