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I had my BCIR for almost 20 years, with no problems after the first year, until recently when I had to have some other intestinal work done, which caused a number of new problems. Basically however, the BCIR saved my life, since the external appliances would not stick to my skin.
I should also say they my life has been turned upside down because I have found no one willing to do any form of intestinal surgery because of the BCIR; all of the local surgeons want to remove it, even though it is working, just because they cannot think outside of the box and don't want to risk their perfect records!!!
There were times after my initial surgery, and after a recent revision, where I had fistulas from my collar (I have Crohn's Disease), and I have wondered if I would have had the same issue if I did not have a living collar. I am not saying it would have been different; it just makes me wonder.
Personally, I have heard good stories from both. The recovery from the BCIR is very tough, and I expect it is also tough with the K-Pouch. If I was to do it all over again; I think I would look primarily at my location, and proximity to surgeons who would work with me. I doubt the pouches are different enough that I would be willing to travel farther for one than for the other.
For my money, and quality of life, I would look as hard as possible for where the different surgeries can be done. I would also check with the K-pouch doctors to see if they would work with you after a BCIR, and the BCIR doctors to see if they would work with you after a K-Pouch.
I know this is an older post, and I am no longer responding to the original poster; but I am sure others will continue to have the same question.
Gacleader1
You are very right about making sure that your surgeon is a local as possible, that he is openminded and willing to 'cross-control' you if you have either the Bcir or the K pouch...my surgeon in Paris is a great guy, old school but so darned open minded that not only does he think outside of the box, he doesn't know that there is a box.
He does neither k pouches nor bcirs but forms j pouch through laporoscopy and does other keyhole surgeries...his specialty.
When I initially contacted him about my failed k pouch/valve/hernia problems (emergency) he not only listened but requested all of the doc/files etc, met with me and then invited my Canadian surgeon over and gave him priviledges here. Since then he has followed me closely, done 4 other surgeries on me & my pouch solo and invented 2 or 3 totally original techniques for k pouch fixes.
The guy is a God.
You need an openminded colorectal surgeon or internist who is willing to work with you and not against you...they are rare but they exist.
Good luck finding one
Sharon
vanessavy posted:Insurance usually always covers the BCIR unless you have some weird state insurance. I had a 300 dollar copay and I am on Tricare. the stay is 21 days I Believe and it is worth it. You have the best care you can ever get during that time. YOu are allowed a guest to stay with you the entire time, they have spare beds in your suite and that person gets fed 3 times a day for free. They have washing machines, family rooms to watch movies on the large TV, individual cable and tv in every suite with computer desk and wifi. I never had care like I did at the Palms. CC is great, don't get me wrong, I was blown away by that hospital but Palms of Pasedena have that down like a well lubed machines. First hospital I ever went to that on the plaque said "Continent Ileostomy Center"
The whole floor is all BCIR patients. I made a lot of friends and always had people to hang out with. Dr Rhenke is probably one of the most skilled surgeons I have ever had and I have had a lot of surgeries. He is a good man too. He has donated and done a lot of things in the medical/surgical world to impress me.
My issues were GI related I mainly had after so I went to the CC after but that had nothing to do with my pouch it is a different part of my body. Either way in the end you go with your gut feeling.
The crew at the BCIR center do conferences around the US so maybe see if they are coming to a city near you. BCIR alumni go to them and a good place to have questions answered about the procedure. Also they have online chat once a month so you can join and ask questions there as well since the message board is usually dead, because we don't have that many issues I don't think we use it that much.
If you call Susan Kay at the Palms she can also provide you with BCIR alumni phone numbers and you can call and get reviews or ask questions. I think I had a list of 10 people all with my disease, she matched me with other people with FAP that had the BCIR. Talked to all different walks of life around the US. Helped to talk to people with my disease and have had the pouch for over 20 years or more.
I have a long history with illeostomy, then a K pouch, then the illeostomy again. I hated the illeostomy for obvious reasons, and for a while, the K pouch, done by Dr. Launer was fine. Then I started getting pouchitis, again, and again, worse each time. I had to have it taken down to an Illeostomy again. I've now spent over a decade with that, and I'm at the end of my rope. I'd rather well, I won't finish that sentence, but I desperately want the BCIR, and have a local doctor and hospital with a very good reputation, and in fact I've met him before to treat my pouchitis.
My problem is cost. I'm on O-Care, a PPO from Anthem, but they're pulling out of my market come September, I might be able to get on with Anthem, but even if they cover it, there's still a substantial copay. And if they don't, what does it cost? I have no idea how expensive this surgery is. I'm just sort of ruined by the whole thing, the only thing keeping me going is the hope that I can get that BCIR surgery.
Years ago, when I was a stupid kid, the ER surgeon told me as I lay screaming on a gurney, even after a large dose of demerol, that I have two choices, in two to three hours I would be in the morgue, or have the illeostomy surgery. I stupidly chose the latter. I'd like to be able to improve that choice today with BCIR, if I can afford it.
Dave, the BCIR is definitely worth fighting for, provided you are qualified medically for it. You should have sufficient small intestine to make the pouch. I am assuming from your location that the doctor you referred to in your post is Dr. Don Schiller at Olympia Medical Center. He has been doing BCIR’s for many years and has an excellent reputation. I suggest that you first contact his office to see if you qualify medically for the procedure. If so, you can then discuss your insurance situation and the cost of the surgery. If Dr. Schiller is not in your PPO network, it will be necessary for you to get the PPO’s approval for out-of-network coverage. This can be challenging, but there is a much better chance of getting approval since there are only two surgeons in the USA who do this procedure. In light of your insurance situation, it is critical to begin your inquiries as soon as possible. Please feel free to send me a PM with any questions that you have, and best of luck to you.
Bill
BillV posted:Dave, the BCIR is definitely worth fighting for, provided you are qualified medically for it. You should have sufficient small intestine to make the pouch. I am assuming from your location that the doctor you referred to in your post is Dr. Don Schiller at Olympia Medical Center. He has been doing BCIR’s for many years and has an excellent reputation. I suggest that you first contact his office to see if you qualify medically for the procedure. If so, you can then discuss your insurance situation and the cost of the surgery. If Dr. Schiller is not in your PPO network, it will be necessary for you to get the PPO’s approval for out-of-network coverage. This can be challenging, but there is a much better chance of getting approval since there are only two surgeons in the USA who do this procedure. In light of your insurance situation, it is critical to begin your inquiries as soon as possible. Please feel free to send me a PM with any questions that you have, and best of luck to you.
Bill
Thank you Bill. Yes, it is Dr. Schiller, and I tried to hook up with him a few years ago. He was very willing to work with me, but at the time my mother got very sick, requiring 24 hour care, which I provided, despite my pain. Unfortunately, or perhaps mercifully, she died late last year. I will begin my insurance search, but like I said, come September, my company, by far the biggest one in California, is leaving the market, and I don't know if Aetna will work, but I'll try. But my first call will be to him. He was very sympathetic, despite my somewhat distraught condition.
I won't sugar coat it, I'm desperate. I don't know what I'll so if I can't swing it.
