BCIR Contact List - Page 1

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Name: Chrystal
Email: chrysms@yahoo.com
Age: 24
Country: Gainesville, Florida, USA
Surgery: BCIR
IBD: UC
More Info: I had my BCIR surgery in February of 2004, I would be happy to answer any questions I can.

Name: Roxane
Email: Roctek@aol.com
Age: 42
Country: Louisville, Kentucky, USA
Surgery: BCIR
IBD: UC
More Info: surgery 6/89 #400 by Barnett the greatest! St Pete. I have had pouchitis but only because of human error not from any malfunctioning of the pouch. I was trapped at work without restroom breaks that was one incident, the previous is from Pegasys interferon (chemo) that I tried taking for my hepatitis C. I believe the BCIR is a renewal on life. I lived with a Brooke for 1 year and I did not like it for cosmetic reasons. The j-pouch is what doc's would prefer to give you but search all your options. I am a surgical tech and my pouch is MY REASON TO LIVE!!!

Name: Ted
Email: tkelly1@carolina.rr.com
Age: 43
Country: Charlotte, North Carolina, USA
Surgery: BCIR
IBD: UC
More Info: I have had 2 BCIR surgerys. The first was in Florida and was unsuccessful. Dr. Rehenke said it was because I had been taking predisone for so long it was still in my system and would not allow the BCIR to heal. My second surgery was 1 year later in St. Louis Mo. It has been great. Dr. Gaskin, who has now retired, did the surgery. The BCIR is even better than I thought it would be, I am better off now than I have been in 15 years, which is when I had my first symptoms of UC.

Name: Susan
Email: susan5152001@yahoo.com
Age: 48
Country: Winter Haven, Florida, USA
Surgery: BCIR
IBD: Ischemia
More Info: Had a Brooke for 6 years; age 27-33; had my son w/ a C-section with the Brooke ilostomy; had the BCIR done in 89'. I like it better; have had major leak in pouch;had it fixed; then pouchitis; got it under control; now collar leakage; scheduled to have it fixed this summer; BCIR is still worth it to me.

Name: Courtney
Email: Fallonite@hotmail.com
Age: 28
Country: Fallon, Nevada, USA
Surgery: BCIR
IBD: Ischemia
More Info: I have a Brooke's Ileostomy and am considering converting to a BCIR. I would appreciate any advice.

Name: J M Denner
Email: jmdrbp@yahoo.com
Age: 48
Country: Baltimore, Maryland, USA
Surgery: BCIR
IBD: UC
More Info: This is my second BCIR. The first was a Koch Pouch that lasted 18 years. The BCIR is a much improved version. Don't be afraid of the pouch. I can be your friend.

Name: Kevin
Email: mchamberlin@voyager.net
Age: 35
Country: Ohio, USA
Surgery: BCIR
IBD: UC
More Info: After surgery 4 weeks, intestine torn am on hyper al for 4 weeks. Would like to hear from anyone that got the tear also. Am very dissappointed in the BCIR.

Name: Mark Hamel
Email: mkphh@cavemen.net
Age: 40
Country: Carlsbad, New Mexico, USA
Surgery: BCIR
IBD: UC
More Info: Diagnosed with Ankylosing Spondylitis 2 months prior to having symptoms of UC.

Name: Mike Sheffield
Email: shawnsheffield@hotmail.com
Age: 47
Country: Pensacola, Florida, USA
Surgery: BCIR
IBD: UC
More Info: I had Ulcerative Colitis for 17 years before getting my BCIR in St. Louis in 1993. I haven't visited a doctor regarding the procedure since.

Name: Susan Smith
Email: susan5152001@yahoo.com
Age: 47
Country: USA
Surgery: BCIR
IBD: UC
More Info: I had a Brooke ilostomy at 28; went to the BCIR at 36. Love it for the most part; have had recent trouble with internal bleeding; supposedly from a catheter; spent 4 days in hospital at Palms; went home; did well for a month; now some bleeding again. BCIR is more delicate than I first thought; I have had this since 1989.

Name: Doreen Hagen
Email: DOREENHAGEN660@HOTMAIL.COM
Age: 42
Country: Michigan, USA
Surgery: BCIR
IBD: UC
More Info: I now have an ileostomy and I'm thinking about the BCIR. I would like to know the pros and cons of it.

Name: Bill
Email: Radxbill@aol.com
Age: 53
Country: Rochester, New York, USA
Surgery: BCIR
IBD: Congenital issues
More Info: My story begins in 1948 when due to congenital issues a colostomy was performed at birth. Years of revisions turned it into an ileostomy. Discovered the BCIR process and had it performed in St. Louis in 1994 - it's the BEST decision I ever made. Any questions? Feel free to email me.

Name: John Powers
Email: jhpcpa@earthlink.net
Age: 55
Surgery: BCIR
IBD: UC

Name: Deanna
Email: deanna.michael@sympatico.ca
Age: 28
Country: Guelph, Ontario, Canada
Surgery: BCIR
IBD: UC

Name: Ellen Smith
Email: momboys@hotmail.com
Age: 40ish
Country: Long Island, New York, USA
Surgery: BCIR
IBD: UC

Name: Judy Blake
Email: newellblake@aol.com
Age: 58
Country: Denver, Colorado, USA
Surgery: BCIR
IBD: UC/Dysplasia
More Info: I had the "J" pouch in 1988, In 1991 had BCIR surgery in Dallas, TX. Great....also had revision for slipped collar valve in June, 2001. Would like to communicate with others like me.

Name: Thomas A Russell
Email: liltommy@aol.com
Age: 45
Country: Metairie, Louisiana, USA
Surgery: BCIR
IBD: UC
More Info: First, I had a total colectomy with an Ileoanal pull-through. For 2 1/2 years rendered me totally disabled. I didn't have enough intestine to create a J-Pouch, therefore I had to go with a straight line method. Now, I had the reversal to the BCIR, & totally completely happy with it, it's given me my life back.

Name: Casey Roesner
Email: croesner@hotmail.com
Age: 27
Country: Stratford, Ontario, Canada
MSN Messenger;croesner@hotmail.com
ICQ: 164927268
Surgery: BCIR
IBD: UC
More Info: I am new to the BCIR but if you're looking into it, feel free to ask me anything. I have had it since January 28th 2002. I had a Ileostomy also but then decided I would try a new life. And so far this one outbeats it all!

Name: Mary
Email: lightningxg@hotmail.com
Age: 48
Country: North Carolina, USA
Surgery: BCIR
IBD: FAP
More Info: Have had my BCIR since July 1992. Have had very few problems and many rewards as a result of this surgery. I can work, shop, travel, swim, and so much more than I can list. I have had a life since this surgery.

Name: Deanna
Email: dwolfe@wkyt.com
Age: 28
Country: Kentucky, USA
Surgery: BCIR
IBD: FAP
More Info: Had BCIR performed as primary surgery about 9 months ago. Doing well now. Would answer anyone's questions about the surgery.

Name: Warren LeVeque
Email: levair@aol.com
Age: 60
Country: Anderson, Illinois, USA
Surgery: BCIR
IBD: UC
More Info: I have a very active life: Water skiing, sports car racing, motorcyling, etc. I have had this operation for three years. It's not perfect but much better than pouches.
I had two failures from this surgery; would like to hear from others who have had similar experiences.
How do the others handle dehydration?

Name: BLR
Email: gdccowboys@aol.com
Age: 37
Country: Inola, Oklahoma, USA
Surgery: Thinking Of BCIR
IBD: UC
More Info: I would like to know the pros/cons of the BCIR surgery. I currently have the J-Pouch and I am on the verge of physical and mental exhaustion. I cannot take much more of the burning, itching, lack of sleep due to frequent trips to the bathroom and am unable to eat much. Incontinence is also a major problem! I'd like to know about any complications experienced with the BCIR and how the follow up has been with the hospital. Any info will be greatly appreciated!

Name: Ann
Email: walker@wadleyrmc.com
Age: 52
Country: Texarkana, Texas, USA
Surgery: J Pouch then BCIR
IBD: UC
More Info: I suffered with UC for 15 years before having a J-Pouch done in 1986. I suffered with that disaster for 13 months before converting to the BCIR. I've had the BCIR now for 14 years. I am once more in control. My quality of life improved 100%. I do have occasional Pouchitis but it's easily controlled for me by taking Flagyl or Cipro. I would have the BCIR surgery again tomorrow if I had to.

Name: Karen
Email: kdesco@attcanada.ca
Age: 53
Country: Canada
Surgery: Ileostomy
IBD: UC
More Info: Had my surgery in 84 after 6 months of intense quick progressing UC - 3 months in hospital toxic megacolon lots of post-surgical stuff, ie collapsed lung from messed up central line, grand mal seizures, lost all my long hair. And then several years later developed killer panic attacks from I guess post traumatic stress. Anyway its all pretty much normal now - love life have dated post divorce and ride horses. I recently met a retired surgeon from New Hampshire who told me there is a new surgery where they can create an internal pouch from several loops of small intestine. You then catheterize and it gets rid of the external pouch and all its attendant problems. Does anyone know about this? I realize it would be major surgey and the attendant risks. Still I must admit I still dream of being "normal" again.

17 Oct 2001
Name: Brooke
Email: brbrtapp@hotmail.com
Age: 23
Country: Manhattan, Kentucky State, USA
Surgery: BCIR
IBD: UC

14 Oct 2001
Name: Terri
Email: dtkeith@madisoncounty.net
Age: 42
Country: Northwest Arkansas, USA
Surgery: none yet!
IBD: UC
More Info: After 18 long years of Ulcerative Colitis, I'm finally agreeing with the doctors that I should stop risking colo-rectal cancer, and just have my whole darn colon out. I'm very interested in the BCIR, but don't know all that much about it. I'm also kind of 'small potatos' here, (as they say in Arkansas,) whereas I might not be able to afford buying the external appliances, as I hear that they cost about one hundred dollars a month to buy?? Yikes!! Does anyone know of a super discount supplier??
I have Cigna insurance and am wondering if they would cover the BCIR procedure, also. Have been on Prednisone, and Sulpha since 9/27/01 and it doesn't seem to help much......
Any replies are very welcomed here!!

Name: Ann
Email: walker@wadleyrmc.com
Age: 51
Country: Texarkana, Texas, USA
Surgery: BCIR
IBD: UC
More Info: I had UC for 15 years. Had J-Pouch in 1986 with many complications. Converted to BCIR in 1987 and regained my lifestyle. I've had great success with the BCIR. Would be glad to discuss the J-Pouch or the BCIR with anyone.

Name: Judy
Email: ufoquilter@torchlake.com
Age: 61
Country: Michigan, USA
Surgery: BCIR
IBD: UC
More Info: I'd be happy to share my experience with BCIR surgery and recovery. My BCIR was done in '96.

Name: Ed Lisoski
Email: eddiel@wcc.net
Age: 46
Country: Vancourt, Texas, USA
Surgery: BCIR
IBD: UC
More Info: I had a conventional Brookes ileostomy when I was 19 years old. In 1994 I had a BCIR done and it was the best thing that could have happened to me. I will be glad to talk to anyone who has any questions.

Name: Deanna
Email: dwolfe@wkyt.com
Age: 27
Country: Lexington
Surgery: BCIR
IBD: Familial Polyps
More Info: Had the BCIR procedure performed 4 months ago, after being diagnosed with Familial Polyposis. Very happy with the procedure. I welcome any questions!

Name: Sammi
Email: sammij2@hotmail.com
Age: 43
Country: Seattle, Washington,USA
Surgery: BCIR
IBD: UC
More Info: I had my Ileostomy in 1996, then had my BCIR in December of 1999....what freedom I have now, my life is brand new now...I would love to talk to anyone that wants to talk...

Name: Jocelyn Moffatt
Email: hocewoman@htmail.com
Age: 28
Country: London, Canada
Surgery: BCIR
IBD: UC
More Info: I had an ileostomy for three years. I finally converted to the BCIR. What a difference. I'm very happy with my decision and I highly recommend it. Anyone with questions, feel free to email me!

Name: Renay Jarrell
Email: rjarrell@aol.com
Age: 42
Country: West Virginia, USA
Surgery: BCIR
IBD: UC
More Info: Very Happy with my BCIR-willing to answer any questions.

Name: Dennis Forbes
Email: dennis.forbes@bmts.com
Age: 54
Country: Owen Sound, Canada
Surgery: BCIR
IBD: UC
More Info: Had BCIR surgery in London, Ontario in October 1998. Had a Brooke Ileostomy for about a year before the BCIR surgery. Very happy with the BCIR.

Name: Dawn Ferguson
Email: ebarmani@aol.com
Age: 24
Country: Michigan,USA
Surgery: BCIR
IBD: Familial Polyps
More Info: I just recently had my conventional ileostomy changed to the BCIR. It was the best thing I ever did. I would love to give anyone information on it.

Name: Teresa Lopez
Email: tlopez@syix.com
Age: 41
Country: California, USA
Surgery: BCIR
IBD: UC
More Info: The BCIR is good for some people but for me it's been hard.

Name: Carolyn
Email: clw724@AOL.COM
Age: 58
Country: Bakersfield, Canada
Surgery: BCIR
IBD: UC
More Info: I had a conversion from an external pouch, which I named Bridgett and wore for 9 years before having it converted to a BCIR in May 1999. I have had quite a few problems with my BCIR, and have given great thought to having it converted back to an external pouch. I am currently having problems with a form of pouchitis, any info would be greatly appreciated.

Name:Lisa
Email: lisaellin@aol.com
Age: 32
Country: USA
Surgery: None yet
IBD: UC
More Info: Just that I am a single 32 year old woman who may need surgery in the future. I just spent 16 days at Mt. Sinai Hosp. in NYC under quite excellent care. I am interested in the BCIR. Currently I am taking cyclosporine, prednisone, asacol, 6MP, rowasa and cortenemas, and a few other assorted goodies! I have a great job, good outlook on life, am optimistic about the future but would like some of my pain to go away! I would be interested in hearing about others' experiences with cyclosporine (and the BCIR).

Name:Susan Kay R.N.
Email: Susan.Kay@bcirostomy.com
Country: St. Petersburg

More Info: I am the nurse that is in charge of the BCIR program at Palms of Pasadena Hospital. I am available if you should have any questions about the procedure.

Name:Merrill Williams
Email: merrit41@aol.com
Age: 42
Country: USA
Surgery: BCIR
IBD: UC
More Info:Had BCIR in '94 and haven't seen a doctor since! Would highly recommend it.

Name:Susan D. St. Jon
Email: stj2trvl@gte.net
Surgery: colostomy
IBD: ???
More Info:Hi,

Does anybody know why the BCIR is not recommended for those with colostomy only those with ileostomy?

Have my colostomy since 1970 (28 then and 56 now). After all these years am real tired of irrigating daily and sometimes twice daily. It would seem that converting to the BCIR would be easier as I get older.

Do you have any knowledge on this subject?

Name: Chris Linn
Email: BLinn410@aol.com
Surgery:Anticipating an ilesotomy or a BCIR
More Info: Want to know about the Pros and Cons of the BCIR and the exterior bag ileostomy.

Name: David Fortner
Email:davenpat@htc.net
More Info: Had my BCIR surgery in 1993. Doing great,more than glad to answer any concerns you may have.

Name: Rita Raleeh
Email:rita@texoma.net
Surgery: BCIR
IBD: UC
More Info: I started having symptoms of UC in March 92, when I was 5 mos pregnant with my daughter. I was diagnosed in July 92, 1 month after she was born. I tried most every conventional and holistic remedy you can think of. Nothing worked except prednisone and I was on it almost constantly. I was terrified of surgery and scheduled it twice and chickened out. Finally in Dec. of 96 I was so miserable I scheduled surgery for Jan. 97. Truly, if I can do surgery, anyone can. I have had some problems with pouchitis, but found an herbal remedy that works great. Today I feel great and have my life back again (no constant worry about where the next bathroom is!!) Feel free to email me at rita@texoma.net, if you'd like to know more about the BCIR, or my experience.