BCIR Surgery Availability in England?

Replies
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6973
Roch!!
Feb 09, 2016 6:37 pm

Does anyone know if the BCIR surgery is done in any hospitals in England?

Past Member
Feb 09, 2016 7:43 pm

As far as I'm aware, John Radcliffe in Oxford still does BCIR. I can't remember the name of the other one, but it's in Scotland. Good luck.

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Roch!!
Feb 10, 2016 4:36 pm

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.

Past Member
Feb 12, 2016 8:57 pm

Never say never!!! Hope you are a candidate...would like to know how you get on, I don't know much about BCIR.

Roch!!
Feb 14, 2016 4:59 pm

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 intestinal waste. 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 buttonhole, so it says. You just cover it 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 possible before I see him. Thanks again.

 
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Past Member
May 01, 2016 7:56 pm

Roch--have you spoken with your doctor 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 Crohn's 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 that the most prohibitive factor, especially in countries with free medical, appears to be the cost--a whopping $225,000.00. If that turns out to be the case, may I suggest that I have seen very few better reasons to start a GoFundMe page to attempt to receive some financial help. UC and Crohn's organizations 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 GoFundMe 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

Roch!!
May 02, 2016 11:52 am

Thank you ever so much, Nancy, for 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 fundraising, but I can't see myself reaching that sort of money! But, hey... Never say never! ;) So wish to have this done...

Once again... Many thanks and I will keep you posted... Rochelle ;

Penguins7
May 02, 2016 1:31 pm

Roch, I did some research on the BCIR surgery and have spoken with the nurse at the Florida facility. They told me that 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 not had any flares, but my Crohn's was always in my lower (large intestine). I didn't 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

Roch!!
May 02, 2016 8:10 pm

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 ;:)

Past Member
May 03, 2016 6:07 pm

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 GoFundMe 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.

Peace.

Nancy.

Roch!!
May 09, 2016 10:08 pm

Hi Nancy, I am sorry it's 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 you're 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 lose... Good luck and I will be in touch once I've seen my consultant... Rochelle

iMacG5
Dec 18, 2016 10:14 pm

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.

Mike

Angelicamarie
Dec 20, 2016 9:00 pm

Hey iMacG5, how are you today? You were responding to someone else but you sent it to me. Angelicamarie, happy holidays.

iMacG5
Dec 20, 2016 10:44 pm

Hey Angelicamarie, it might have been an accident but it's NO accident that I wish for you to have a very merry Christmas.

Sincerely,

Mike

Angelicamarie
Dec 20, 2016 10:48 pm

Mike, thank you so much, be careful!!! Best wishes Angelica Marie

Jayne
Jul 31, 2023 12:07 am
Reply to Roch!!

Try looking up Mr. Edward Westcott - but there may well be reservations for CD patients.

Good luck

Jayne