A BIG question: Permanent Ileostomy/Kock/BCIR?

[Waif]

wow, i am so excited about this BCIR thing! i had an ileostomy all through my teen years, which was pretty hard. then i got a j-pouch, which was so much better except recently I had such problems with flares and poutchitus i had to get an ileostomy again. i feel like i've been reverting into a "protective" thing having to deal with the ostomy again. i feel in my bones i can't go back to the j-pouch due to problems with my rectum still being diseased which effected my j-pouch ultimatly, but i would love to try this BCIR thing. to me it would be the best of both worlds, not having to deal with my rear end and not having to deal with a bag. yay! i need to ask my doctor about this.

but, can anyone tell me if they've had problems with pouchitis? b/c i may be prone to it, but of course i don't know.

[Flemmart]

Anyone with a pouch can get pouchitis...but it is not as common with a continent ostomy. Your doctor may not be pro BCIR since all continent ostomies are not without some risk of failure - but no higher then the jpouch. Consulting with a surgeon is usually better then a GI dr or your general practitioner. Good luck, I've have my Kock pouch for over 30 yrs - got it after my end ileo. Ask alot of questions and be well informed!

[allie]

Hi guys

I have had a ileostomy for almost a year now and have had constant problems with it. I still get cramping, it leaks a lot, its trial and error with foods, i cannot go swimming as the wafer comes right off when wet and if it leaks it can bring bacteria into the water. Im sleeping on the couch because I cannot sleep on a bed. Sometimes I even sleep sitting up in a chair!!!

I want very much to get a k-pouch so I can have some sort of freedom. I tried for the j-pouch but it didnt work. I have FAP. I want to be able to live without being to scared to even go to walmart for fear of leakage (its happened to me before) and being to afraid to even think about dating.

The trouble is that I am on the pudgy side. I weight 234 pounds. I was told by my surgeon that I am to big to try for the j-pouch again, and I was turned down for the BCIR as well. I am trying desperatly to lose weight but I also have diabetes so it is really hard. Can a k-pouch be done on someone like me? Had my ugeon told me when I went in for a consult that I was to big for the j-pouch none of this would have happened to begin with.
Please help.
Allie
PS I am also suffering from what they term "phanom rectal pains"and have no clue what to do about it so if you have any advice id appreciate it!

[Flemmart]

Hi Allie...unfortunately if you were turned down for a BCIR, you probably will be for a kpouch. Losing weight is hard, and you'd have to try to keep it off.

You may want to consult with a skilled kock pouch surgeon to rule it out. They'd be able to tell you if you are a candidate or not.

Here is a list of surgeons we've been able to identify...

http://www.ostomy.org/forum/viewtopic.p ... 6&start=45

Best, Janice

[grannydee]

I'm about to undergo surgery for an ileostomy, and am wondering about "training" my stoma after I'm healed. I'm not sure that this is something that can be done, so any info anyone has will be wonderful. I'm scared to death, but excited at the same time, because with surgery, I'll be getting my life back! Thanks folks!

[Edeemacreedee]

Hi,
I'm from the UK and I'm looking for a good sugeon in the UK that can do a BCIR for me. I have a j-pouch at the moment and have holes(fistula's)and 2 rectol vaginal fistula's, so another J-pouch is not an option. Can any one recommend a good surgeon in the UK that can help me please.
Thanks,
Rachel

[Flemmart]

HI Rachel....we have a list of continent ostomy surgeons...hopefully someone on this list is nearby and can do a consult for you. best of luck!

Dr. Brian Taylor (BCIR)
339 Windermere
London, ON
(519) 663-3209

Mr David Bartolo
Western General Hospital
Colorectal Surgury
Edinburgh, UK
0131 537 1000 (Main Hospital Number - ask for his sec)
http://www.surgery.ed.ac.uk/sp...ctology/bartolo.html

Professor Neil Mortensen
Dept Colorectal Surgery
John Radcliffe Hospital
Oxford OX3 9TATel +44 (0)1865 220926

MOD EDIT: Please do not list emails in your posts, but instead contact each other thru PM or email.

[JohnB]

Just to let you know ..

Dr. Brian Taylor (BCIR)
339 Windermere
London, ON
(519) 663-3209

is London, Canada ...

I don't supose there are any new surgeons in the United Kingdom since this post?

I think the 2 that you listed are non-BCIR ....

[beverly10]

Any names for doctors that do the BCIR here in the US, specifically near the eastern shore? Delaware, Maryland, Virginia? What about the cost?

[BillV]

The closest BCIR surgeon is Dr. Ernest Rehnke in St. Petersburg FL. His website is www.bcir.com and has a significant amount of information about the procedure and contact information. They can mail you a packet that contains a video presentation and a list of over 300 people with BCIR’s that you can contact. I had my BCIR done there 3 years ago (for failed j pouch) and received the best of care from Dr. Rhenke and the hospital staff. Following a 3 month adjustment/recovery period post-op, I have had no problems with my BCIR. Like most major surgeries, the cost is significant and your insurance deductible and co-insurance will determine how much you must pay. I live in Northern Wisconsin and encountered no problems in the 12 hours it took to travel home. My wife accompanied me for my surgery and the private hospital room had a pull-out bed for her.

You may want to look into the closely related k pouch if travel distance or insurance coverage are problematic for you. I do not know of any specific doctors in your area who do that procedure. You could probably get cost estimates by contacting the individual doctors’ offices.

[BillV]

I forgot to mention that Dr. Rehnke is having a free seminar on the BCIR on March 12 near the BWI airport. This would be an excellent opportunity to meet him in person and discuss any questions you have about it. You can get more information and register for it on his website: www.bcir.com

[beverly10]

BillV
Do you need to have your pouch scoped yearly, and did you have problems finding a local doctor to help. Did you come home with home health nurses? I'm a little scared going so far away to have this done, but the thought of living bag free is quickly overcoming my fear. Thanks in advance for any help and/or advice you can give

[bcirray]

Beverly;
Let me answer from my own experiences. Scoping is not necessary unless there is a suspected problem. A Gastroenterologist is more than capable of performing a scope with direction from the preforming surgeon. Pictures can be sent to surgeon. Alerting your PCP of the pouch and any other doctors that you see routinley is most advised. No home heath nurse is necessary. While in the hospital for the 21 days you will be given instructions on care of the pouch so that you are well equipped knowledge wise to cope with the function of the pouch. Much more information can be found via the website bcir.com

[BillV]

Beverly, I have annual scoping of my pouch because I have FAP; otherwise, an annual scoping would not be necessary. My regular gastroenterologist does my scoping using a pediatric scope. No anesthesia is needed for this exam and I watch the procedure on a monitor. Your surgeon will probably want you to have a scope exam about a year after your operation to make sure everything is OK. My PCP monitors my iron, ferritin and B-12 levels twice a year. I am the only BCIR patient either of my doctors have and feel completely comfortable with them. I required no home nursing care and made weekly contact with a nurse at the BCIR program for a couple of months so they could monitor my progress. Dr. Rehnke and his nurses are readily available by phone in the unlikely event you should experience any problems at home. You will like the freedom and other benefits that the BCIR offers.

[beverly10]

Thank you for the help. I'm learning so much...I overwhelmed with it all. I'm meeting with my gastro this week. I really hope he is supportive of this procedure. He's been there for me for almost 30 years of UC and surgeries. Then I'm on to the BCIR seminar on Saturday. It just amazes me that I'm just now learning about this after all these years.