Does anyone know if the BCIR surgery is done in any hospitals in England?
As far as I'm aware John Radcliffe in Oxford still do BCIR, can't remember the name of the other one but it's in Scotland. Good luck
Thank you for the info.. Although I may not be a candidate for it as I have Crohn's. But never had any active Crohn's since the operation over 21 years ago... So still doing lots of research. Thanks again.
Never say never!!! Hope you are a candidate...would like to know how you get on, I don't know much about BCIR
Thank you very much, Panther... The BCIR is an up to date modification from the Kock Pouch. Made from the last part of the small intestine, and is used to store intestina lwaste. Which you drain a few times a day using a catheter. So you don't have any appliance on your tummy. Just a small opening like a button hole, so it says. You just cover over with a small adhesive dressing... I've got an appointment in April to see my surgeon, so of course I will keep you posted.... Just doing as much research as poss before I see him. Thanks again.
Roch--have you spoken with your dr. yet re: BCIR ? I went to a seminar on April 24 in Raleigh, NC USA to research the possibilities for myself. The surgeon, Dr. Rehnke, was informative and one point that was made was that Crohns does not preclude your elimination as a candidate, especially as you say there have been no recurrences since your surgery 21 years ago. I have found tthat the most prohibitive factor especially in countries with free medical, appears to be the cost--a whopping 225000.00. If that turns out to be the case may I suggest that I have seen very few better reasons to start a go fund me page to attempt to receive some financial help. UC and Crohns orginizations may be able to offer some advice or help with fundraisers or how to programs that might get your situation kick started. Hell--kids nowadays start go fund me pages for cars, college education, prom dresses and just plain i need money reasons. Personally, I believe that there is a world of people able to help who just need to know where to direct their assistance. I am searching myself. I wish you good luck and Peace. Nancy
Thank you ever so much Nancy to your reply regarding my post on BCIR... I can't begin to thank you enough for your information. Luckily I am waiting for a new appointment to see the doctor/specialist as he wasn't able to fit me into his appointments a few weeks ago. Which is good as
1. I have more time for research and
2. I have heard from you.
I can't believe the cost of this though! and yes I probably will not be allowed it because of cost. Thank you also for the advice on fund raising but I cant see myself reaching that sort of money! But, hey... Never say never! I so wish to have this done...
Once again ... Many thanks and I will keep you posted... Rochelle
Roch, I did some research on the BCIR surgery and have spoken with the Nurse at the Florida facility. They told me with Crohn's you would have to have gone 3 years without a flare up after your ostomy surgery. Me too since my surgery, i have had not had any flares, but my Crohhs was always in my lower (large intestine). Didnt realize the cost was so steep and since i am doing so well now since the surgery, I will opt to keep the pouch for now. I would love to get rid of the bag at some point. Good luck and keep us posted. Penguins7
Awwwww, thank you also for your reply... I have not had any flare up since my operation back in 1995.... So just keeping everything crossed! Of course I have had no problems regarding my Ileostomy... I just have never been happy with my bag
I am sorry if I offend anybody, but it is just how I have felt since having it done... Of course I will keep you and all updated on things... Thanks again for your reply... Rochelle
Roch So glad to see you are open to different ideas on how to cope. For me it is extremely frustrating because if my surgeon had even mentioned the BCIR WHILE I HAD TWO INSURANCES, I would have been in a much better position financially to go ahead with the procedure. Of course then HE would not have performed the three removals he helped himself to !! I am attempting to go ahead anyway but right now with limited insurance the cost to me out of pocket will be 50,000.00 I am being pressured for permission by 29 nieces and nephews to go ahead with a go fund me page, even though I have never been one to ask for help in personal matters. That is something I have learned from the very intelligent people on this site--Do you need help ?--Then ask for it !! If you come up zero you are no worse off than when you started!! Good luck with your research
Hi Nancy, I am sorry its taken me a while to reply to you... Just to say that I am feeling very positive about seeing the specialist regarding this BCIR operation... I should be hearing within the next few weeks for an appointment to see him... So I will keep you posted.
I was sorry to hear about your surgeon not mentioning to you about the BCIR while you had the 2 insurances! Sounds promising that your attempting to go ahead with the procedure... and being pressured for permission by 29 nieces and nephews to go ahead with the "go fund me page" !!!!! Wow!!!! "29!!!!" Well go for it... as you said to me regarding the go fund me page... you have nothing to loose...Good luck and I will be in touch once I've seen my consutant... Rochelle
Hi Temperance. I think what matters is that you know you're among friends who will offer learned advice to help you handle your situation. Knowing nothing about the procedure except it's worked quite well for some folks, I would focus on the ability of the available surgeons and their staves, the probability of a much better quality to your life and what if it doesn't work the way you hope. Ask all the questions you need to and, if necessary, be the devil's advocate to solicit all the advice you need.
In the meantime, concentrate on having a very Merry Christmas.
Hey iMacG5, how are you today, you was responding to someone else but you sent it to me . Angelicamarie happy holidays
Hey Angelicamarie, it might have been an accident but it's NO accident that I wish for you to have a very merry Christmas.
Mike, thank you so much, be careful!!! Best Wishes angelicamarie