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Posted 11/10/2011 4:27 PM (GMT 0)
Hello, I have Ulcerative Colitis.  I'm currently on Remicade but things are not looking that good right now and surgery to remove the colon would be my next step.

 

I live in the Western New York area, has anyone had surgery around this area?  I'm a few hours away from the Cleveland Clinic in Ohio as well. It appears that it might be one of the better facilities in the country for this type of surgery?

 

How long do you typically have to stay in the hospital after surgery?Also, how difficult would a 3 hour ride home be for me after surgery?

 

 

Thanks!

Posted 11/10/2011 4:59 PM (GMT 0)
You can't go wrong with surgery at the Cleveland Clinic. If you are opting for a jpouch, surgeon experience is everything.

I had my jpouch surgery a couple hours away from my home, for the reason of getting a top surgeon. The drive home was not bad; remember at that point you will probably still be on pain medication.

Surgery stay for Step 1 can be anywhere from 5-7 days.

Sue
Posted 11/10/2011 5:14 PM (GMT 0)
Good for you for making this big decision. I was on Remicade for 9 months and it helped for a couple of weeks after each dose...my next step was either to double the frequency AND dosage of remicade OR surgery. I was finally at the end of my rope and chose surgery. Best decision I have ever made concerning my UC! I do not live near New York, but Suebear is right about you still being on pain meds and the length of the hospital stay. However, I live about an hour from where I had my surgery, and by the time I got home, I was miserable! My bag needed to be emptied, I was tired, I hurt everywhere (even with the pain meds), but everyone is different. You may be able to sleep all the way and not have any issues with your bag...I have never been able to go 3 hours without emptying it!

Good luck!!!
Posted 11/10/2011 5:17 PM (GMT 0)
If you are that close to Cleveland Clinic, that is an excellent option. Dr. Joel Bauer is a very experienced surgeon with J pouches who is out of Mt. Sinai in NYC who would also be a good choice. I ended up having surgery at Jefferson University Hospital in Philadelphia (Dr. Scott Goldstein - excellent) but I interviewed Dr. Bauer and I liked him. If you have some time on your side, I suggest interviewing several colorectal surgeons and see who you are comfortable with. That's what I did and it was nice to have a choice. Best of luck to you.
Posted 11/10/2011 5:18 PM (GMT 0)
I live just under three hours away from Cleveland Clinic and have not had any issues traveling home after appointments, getting questions answered over the phone once I'm at home, etc. With the magnitude of this surgery, three hours is not too far to travel for the quality of surgeon and post surgical care you will receive.
Posted 11/10/2011 8:23 PM (GMT 0)
Hubby's surgery was at Mayo Clinic which is about a 3 hr drive for us as well.

The drive home wasn't bad at all...I was more concerned about it than he was...lol. I was very careful with bumps and took them slowly. He had an inflatable waffle type cushion from the hospital for his tush. I also brought several pillows...a bed pillow, a smaller travel pillow for the seat belt and threw in a few toss pillows. This way he could position himself, pad areas or whatever to get in the most comfortable position for the drive home and it worked out super.
Posted 11/11/2011 12:37 AM (GMT 0)
the hospital i had surgery at was about an hour and a half away. the ride home wasn't bad, except for rail road tracks, lol. I actually enjoyed a car ride where i didn't worry about the bathroom, and i was really happy about stopping for fries and a milkshake!
Even if you have to drive farther having a good surgeon is worth it.
Posted 11/11/2011 12:54 AM (GMT 0)
Thanks for the all the great feedback. I'm glad this forum exists and is frequented by such helpful people. I'm still hopeful that Remicade will work but feel it's time to mentally prepare for surgery. It seems like a 3 hour drive is definitely feasible. 5-7 days in the hospital would not be fun but it is what it is. Thanks everyone!
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