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Maybe Colostomy Next! What am I in for?

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Posted 5/19/2011 7:01 PM (GMT 0)
My doctor seems stuck on a Colostomy or J pouch even though I have shown slow improvement. I do have a second Doctor I am consulting with. Am I in the right section to ask the question about what this is. Is it better than going a lot? I really know nothing and searching the web for info. I thought I would ask to get some procedures and information from someone that has this. Any help would be great. Thanks Pat's husband Ron
Posted 5/19/2011 7:38 PM (GMT 0)
Surgery is YOUR decision, not your doctor's.

The surgery choices for UC are permanent ileostomy, j-pouch, or k-pouch. If you feel your GI is pushing you for surgery, get a 2nd opinion. Although I did have jpouch surgery, and love it, it's only to be done either when you have a low quality of life due to UC or are steroid dependent.

Sue
Posted 5/19/2011 9:52 PM (GMT 0)
It seems if I don't do something the doctor will not give me Prednisone when needed.
After 2 years of hell my wife is doing much better and doing very good with remicade infusions. Seems to be getting better every month. Now she goes 6 weeks out of 8 weeks on the remicade with very good results. She seems to be stuck on that prednisone. At 6 weeks she needs 20mg of prednisone to make it to 8 years for her next infusion but she still does OK during the 6-8 week period. Doc cannot give her remicade at 6 weeks because of insurance and he won't appeal it. Doc says her improvement is not fast enough and really leaning toward surgery. Ron
Posted 5/19/2011 11:16 PM (GMT 0)
I would suggest going to the ostomy board on healing well and j-pouch.org. I had the j-pouch and am very happy. Yes, I go 6-8 times a day (may go down to 4), but it's not urgent and doesn't hurt (I just go when I pee...in and out in a few minutes). Surgery is rough and if she decides on the j-pouch she needs to be a good candidate and she really needs to see an extremely experienced j-pouch surgeon. I drove 5.5 hours to go to the Cleveland Clinic. It was so worth it. This is a very complicated surgery. My surgeon does hundreds a year for over 15 years. Don't just get a referral, research it yourself. I wouldn't let anyone locally touch my colon.

Good luck and visit those other sites...they are so helpful.
Posted 5/20/2011 12:55 AM (GMT 0)
Ahh...more to the story.

Your doctor is very wise and should be praised! Your wife is steroid dependent and it appears that Remicade is not working to get her off of prednisone. She should not be taking prednisone as a maintenance medication. Surgery is probably her best choice. Trust me; there are life long detrimental side effects for taking prednisone, even in low doses, and even in short periods of time. I suggest you study up on the possible consequences of using that drug. And while studying that also do research on her surgery choices. I haven't met one surgical candidate who has REGRETTED surgery.

Sue
Posted 5/20/2011 3:25 AM (GMT 0)
if she is on steroids long term that's really bad for her. i took them on and off for the 8 years i had uc and my knees are shot now, and i still have other problems from taking them, four years later.
I have a perm ileo, my quality of life was awful and remi failed me.
best decision i ever made!
she won't get a colostomy, that's not for UC and if they are offering that, you need to find a different dr.
and yes surgery, is way better than going a lot all the time, it means no more chained to the bathroom, and no more dangerous drugs. and like was said, it's hard, and it's a big adjustment,, but i never regret it!
Posted 5/20/2011 7:54 PM (GMT 0)

 

 

How long is the hospital stay for this surgery? How is the healing process? Ron

Disneynut66 said...
I would suggest going to the ostomy board on healing well and j-pouch.org. I had the j-pouch and am very happy. Yes, I go 6-8 times a day (may go down to 4), but it's not urgent and doesn't hurt (I just go when I pee...in and out in a few minutes). Surgery is rough and if she decides on the j-pouch she needs to be a good candidate and she really needs to see an extremely experienced j-pouch surgeon. I drove 5.5 hours to go to the Cleveland Clinic. It was so worth it. This is a very complicated surgery. My surgeon does hundreds a year for over 15 years. Don't just get a referral, research it yourself. I wouldn't let anyone locally touch my colon.

Good luck and visit those other sites...they are so helpful.

Posted 5/21/2011 4:09 AM (GMT 0)

Disneynut66 said...
I would suggest going to the ostomy board on healing well and j-pouch.org. I had the j-pouch and am very happy. Yes, I go 6-8 times a day (may go down to 4), but it's not urgent and doesn't hurt (I just go when I pee...in and out in a few minutes). Surgery is rough and if she decides on the j-pouch she needs to be a good candidate and she really needs to see an extremely experienced j-pouch surgeon. I drove 5.5 hours to go to the Cleveland Clinic. It was so worth it. This is a very complicated surgery. My surgeon does hundreds a year for over 15 years. Don't just get a referral, research it yourself. I wouldn't let anyone locally touch my colon.

Good luck and visit those other sites...they are so helpful.

You said you went to Cleveland? May I ask who your surgeon was? I just made an appointment there for my daughter. She has been on remicade for 4 years and may be losing response. We are checking our options. It sounds like maybe she would be a candidate for the one-step. That is our hope anyway. Any information you could share would be greatly appreciated!! We have to fly there so I won't have to drive anywhere but I am a bit nervous going to a big medical center in a big city I have never been to before.
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