Posted 1/8/2008 10:38 PM (GMT -6)
Hi keith - thanks for the reply. you know, I have only had UC a year (roughly) but I actually feel quite similar to you in the sense that I am already high risk for cancer due to hereditary issues, and this disease and the drug regime just make me unhappy. so, i appreciate hearing your thoughts. I told myself I'll give it another year, not do anything too quickly, but that if I still feel lousy at the end of 2008, then I may just need to part ways with my colon. I just feel like adjusting to no colon would be eaiser for me than UC, personally.

sorry to hear that NYC doctors don't take insurance. I have never heard of such a thing. do you have relatives near any other place where you would feel comfortable having surgery? if so, perhaps you could get the surgery at another hospital? I ask only because surgeons at both Duke and UNC do take insurance (I live by those 2 hospitals), so I would think that either a) other universitiy hopsitals, like columbia, might take it, or b) this issue is unqiue to NYC (I guess everything else is so expensive in the city, why should surgery be any different, huh? just a thought, not that you asked...

you sound very calm about your decision to have surgery. that's probably a very clear sign that it is the right decision for you. when is it scheduled for?
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.

Posted 1/8/2008 11:14 PM (GMT -6)
UCinNC,

I've done my research on the surgeon that I want to use and made my decision....he is highly recommend and I like him too; he has a good bedside manner which is very important to me. He has a very good success rate with the surgery....he was giving me the stats and they were much better than I have heard elsewhere for the j-pouch surgery. about 1% for pouch failure and 1% for reproductive issues.

You really only get one shot at surgery so finding the best surgeon possible is critical. I will probably have to pay 20%-30% off the cost of the surgeon, insurance might pick up the rest. The hospital stay would be covered by my insurance but the surgeon's fees may only be partially covered because he doesn't accept insurance. Plus there are not too many surgeons out there right now who will do a 1-step J-pouch 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 1/9/2008 4:24 AM (GMT -6)
tanx Marty and Headphones.
Headphones i really do pray u get better and have a healthy baby. I'm so sorry you had to go through all that during your pregancy. But look on the bright side it will make your life alot better,i don't know wether this is your first child or not but the last thing you want to have is UC and a baby. It's so much harder. Especcailly as they grow up. Some times when i go out with my 4 yaer old, (which is not that often),and i need to go to the bathroom and i quickly get in the car and drive while breathing very heavily trying not to have an accident, she says go mummy go or she tells my other children to be quiet cos mummy has a bad tummy ache. She has a big list of things she wants us to do when i get better. It makes me very sad that they have to go through this. I wish i get better for them.( sorry to bore you all) but it's so fantastic to talk to people in the same boat. take care xxx

Hi Keith, tanx for the mail.
i'm sorry to hear you have to pay for your sugery, but you know what it will be well worth it.
Also i think your very brave to have a one stage opperation, when my doc first suggested i had a three stage opperation i was scared, then when we decided to go ahead with surgery he said that i was young and fit enough to go with the two stage opp. i was so scared that they were going to form the pouch and give me a bag at the swame time. But honestly this site has helped me so much.
The only problem is that i have to wait a day for your replies cos here in england it's 9;18 am while where ever you all are it's night and you must be sleeping.
But hey i'll never complain!!!!

Also tanx to everyone else who replies, i do apprecciate it.

samie xxxx
Posted 1/9/2008 4:39 PM (GMT -6)
hey Keith - your surgeon sounds great. I am glad you have somoene you are pleased with. I didn't mean to imply you should search unless the financial burden was too great. but sounds like you're in great shape. but I just thought of it because I was actually at an appointment yesterday with a high-risk OBGYN, and I mentioned to her my interest maybe in surgery at some point and she mentioned that UNC does it laproscopically, which is why I thought of it.

anyway, sounds like our philosophies are very similar. I am kind-of jealous of you for being able to know what you want with such certainty. I am not there yet, for sure. but, I guess there is no rush. anyway, thanks so much for sharing your thoughts. I appreciate it.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.

Posted 1/9/2008 5:15 PM (GMT -6)
Part of my thinking is that it is only a Colon.... you don't need a colon to live and if you aren't living a Happy and Productive life because of your colon (UC) then you need to take it out of your body.

I really don't understand why GIs try so hard to "save the colon"..... for me it is not worth it. I am done with it and I am not waiting around for another cure. Even if they found a pharmaceutical cure today it would probably take at least 6 years before the FDA approved it.

--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 1/9/2008 6:15 PM (GMT -6)
keith, that is what i think, i don't know why doctors are so adamant about that either. Or people for that matter, even though i was for a while.
but anyway, you can eat whatever you want, just be sure you chew! My dr told me it would be fine just not to eat a whole cabbage at one time, who would do that anyway? I stay clear of seeds and nuts, because seeds cannot be digested, and nuts are hard to digest, but you can eat them, just be careful with then. I eat salad and fruits and meats and pizza, everything. You may notice that some foods cause more gas, you will learn what you can eat without getting alot of gas
Posted 1/10/2008 11:18 AM (GMT -6)
hi summerstorm, just wanted to know what surgery you had and how long did it take you to recover?
That's if you had surgery.
Anyway got a date for my surgery to get rid of my colon. They've booked me in for the 24th of january, hope everything goes well.

samie xxx
Posted 1/10/2008 12:40 PM (GMT -6)
so sorry summerstorm.
i already know the answer to that i guess i forgot who u were.
sorry once again.
anyway how are u doing after your surgery are you feeling alot better?
and has the surgery helped and what are you up to?

take care.

samie xxx
Posted 1/10/2008 4:35 PM (GMT -6)
hey everyone i am a new member and i have joined bcoz of my sister she also has uc u all may know her, i wuld like to say that you all are and have been so brave i don't know how i would have coped with this. seeing my sister go through it is hard enough bcoz her pain is something i can't help with, by joining this site she seems so much happier thanks to you all her opp is on the 24th jan truthfully i'm so scared 4 her i just hope all goes well she is really brave and has coped soo well. if anyone can tell me, how to help her after the opp and how she would feel so that i would now what to expect. thankyou yet again confused

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