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bladder reconstruction
Posted by amar on June 4, 2009 at 10:32 pm41 yr male healthy dx invasive bladder cancer RC recommended
county hospital gave 3 options Ileal Conduit, Indinaa Pouch, Neobladder called Studer ( I think hard to read his writing )
Looking for pros cons of each method from ppl who have had the procedures
Long term benefits drawbacks
etc etc
have done some research already at blcwebcafe someone there recommended this site info on that site seems outdated but I dunnoThanks
Rayamar replied 15 years, 8 months ago 9 Members · 19 Replies -
19 Replies
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ben taub = harris county hospital district
which is where I am to be treated -
GuestJune 11, 2009 at 4:18 am
Whoa Strange…read this……this may be the answer…..
http://www.ehow.com/how_2352454_texas-low-income-no-insurance.html
keeping my fingers crossed.
Pat -
GuestJune 11, 2009 at 4:15 am
Strange..i guess it wouldn’t hurt to ask MD Anderson
According to the Texas Indigent Health Care and Treatment Act, public hospitals are required to provide indigent care where there is no hospital district. Unlike hospital districts, which set their own eligibility criteria, public hospitals must provide a minimum level of service to indigent clients and can not set eligibility criteria that are more stringent than those established for County Indigent Health Care Programs.Nonprofit hospitals are exempt from taxes and are required to provide charity care. For-profit hospitals are not required to provide charity care, but may do so anyway. …………so maybe????
Pat -
Thanks Pat
I can only say he said BLC not too common but his team do a “few” a month I wish there was a way to know for sure how few or many all together
About the last section of small intestine this is reffered to I believe as the terminal illeum the very end of which includes the ileocecal valve both of which I understand to be more needed where they are than where they intend to put them if you look at a diagram of an Indiana Pouch you seehow it is used as a “one-way” valve with the terminal ileum being the “conduit” to the stoma..
My question I guess is how does this missing small intestinal sections affect the digestive processes and what side effects are likely on a bad day to be encountered ..prepare for the worst hope for the best..
As far as SSDI I have app turned in already but 3 months at least before ‘
i know anythingAs a child I was born with bilateral retnal blastoma with right eye removal before I was a year of age at herman hospital and silicone implant, radiation and several reconstructive surgeries to follow at md anderson follow up
( I grew up ) there until I was around 13-14 yrs old then when in the “Endo” clinic I was being checked out to make sure everything was developing properly and had been measured in all directions width girth circumference length of my downstairs (groin) whne asked to stand in front of the Dr. who had about 7-9 student Dr.’s in a semi circle around me pulled out my underwear while the others leaned over and looked down my drawers at which point I remember thinking when I don’t have to come here I will never come here again … now I am donating my removed tissues ( bladder prostrate lymph nodes etc etc ) to MDA for research purposes since at age 13 or so they ( MDA) have been wanting a tissue sample from me so they can continue where they left off amazing how things come full circle now matter how ’round-a-’bout or obtuse you end up where you began … ashes to ashes I guess.. ironic, but if what I can give helps to help or save or even remidy then coolman
MDA, however, will not take uninsured, low income, blah blah, from ben taub I was told “We (MDA) let taub do what they feel capable of and when they cannot handle a given situation due to skills or equipment then and only at that time will MDA start looking for wayds to help me”
Blink blink.. I get it I guess.. bees make honey and men make money
there ya go Is this the same pat from blcwebcafe?
Thanks -
GuestJune 11, 2009 at 3:41 am
Oh Strange….what a bummer…where is that health plan we so desperately need?
Ileal conduit surgery consists of open abdominal surgery that proceeds in the following three stages:Isolating the ileum, which is the last section of small bowel. The segment used is about 5.9–7.8 in (15–20 cm) in length.
The segment is then anastomosized, or grafted, to the ureters with absorbable sutures.
A stoma, or opening in skin, is created on the right side of the abdomen.
The other end of the bowel segment is attached to the stoma, which drains into a ostomy bag.
You’re on the right track about asking the right questions. May i ask ..do you know how many of these surgeries this physician has performed?
Here’s a page to read….
http://www.healthline.com/galecontent/ileal-conduit-surgery/2
Also in Houston here is the website and contact for the ostomy association…they should be able to give you lots of help.
http://www.ostomyhouston.org/
Things are moving pretty swiftly for you. I wish you had more time to find out if there is financial help for you. There is a Patient Advocate Group
http://www.patientadvocate.org/
And i believe on the Home page here we have some references for financial help…i know you can apply for Medicade even if under 65 and also apply for social security disability benefits after. I shall look further into it.
It wouldn’t hurt to contact MD Anderson and talk with a social worker there to see if there is some way they would take you. I’d sure try all the avenues first.
Good luck……….Pat -
lots of great info you guys thanks.
I know this info is on this site somewhere I however don’t own or sit regularly at a computer and even less time with online access, so
I went straight for the forums.
I have no real income or insurance of any type so my Dr. the second opinion and many options are limited to me, I get what I get, so to say.
I still am looking for things like when they remove the small intestine to form the pouch what to expect from that new lack of length in my small intestine and am currently trying to find out if use of the Ileocecal valve and the terminal illeum is required in even the Ileal Conduit (which I have pretty much convinced myself of getting)
I have read of Diareahea and digetive issues .. how long will that last?
so many questions ..
so little time..
I go into surgery 6 15 09 tomorrow 6 10 09 I get admitted I still don’t know so many things
I went to the Dr. at a clinic with trouble urinating (kidney stone presumed) Dr. requested a CT which 4 days later she called w/ the results of when I missed my appt. because I was in too much pain to attend ..you ha ve BC she explained and said go to the ER if I was in pain which I did and was told I was …well making a long story short… after 3 more trips to the ER I was admitted and asked if when a stint was inserted into my ureter would I mind going ahead and doing ondoscopy(?) through the urethra biopsy 15 days later I am being admitted and 5 days after that will be my RC…
how to pee brought me here.. I think Ileal will be my choice being that surgery time is reduced and the long term cost of supplies are going to be less I believe (shrug) My concerns with this method are the ill effects of long term issuse that could be when trying to make an informed descion I like to be informed.
My Dr. is in for a round of 20 questions even though my mind is set this is what I want I still would like to know what I am looking “forward” to I see you guys write I love it I am not hindered in any way and no matter what diversion everone seems satisfied that all great but what can happen not that I am morbid but I do know there is another side to things that are not always so great.’
I want this over with and just want to be “able” again and not “sick” trying to learn a new vocabulary and definitions and knowing that not knowing is my worst fear.
what will I feel after surgery whne I leave or while in recovery.. I can’t get ahold of my Dr.’s (am told I have a team) to bounce anything off of I am scared ot the bone and have nowhere to look for the answers to my questions but here and after tonight I wnt have this until I return from surgery and get a chance to grab a minute at the computer…..
I have a bone scan it came back negative this is good but my tumor when biopsied retreated into the muscle this is bad…grrr man what an aggrivation.. I am trying (today ) to find a local support group in houston tx in the ben taub hospital system tomorrow I will try again I am trying also to get into contact with md anderson people that might can facilitate osme of the answers to my doubts fears and ambitions wiggin out that I am going throughI have read alot of what I want to know but I guess until I go through It I wont know but words like “discomfort” and such are general terms used to ease what I feel is mroe like excrutiating and throbbing …
I think I have a high tolerance for pain and don’ tlike to take medicinces at all
at any rate thanks for all the great posts my prays for you all I just need to mentally prepare myself for the coming week I let you all know how it goes when I get access and maybe you can learn me how to better use this site in a more effictive manner next time ’round -
There is a lot of discussion on this thread about various options for a diversion. I cannot contribute to that discussion, since I still am maintaining an intact bladder. BUT I was struck by several things in your original message: a. “county hospital” As I believe Mike pointed out, this is NOT trivial surgery and you want to be where the surgeon does many of these a year. I would suspect that success with ANY method would heavily depend on your surgeon’s experience and skill. b. I would think that an experienced surgeon in a center that sees a lot of bladder cancer would have resources available to you to help you make your decision….not just “here are three options.”
Please seriously consider getting a second opinion at a center that specializes in this disease and this surgery. I am sure that many members of this list can recommend places near your home.Whatever, good luck
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorYes, it is on the BLC Information tab, and then under Invasive BLC: http://www.bladdercancersupport.org/index.php?option=com_content&task=blogcategory&id=16&Itemid=68
What is urinary reconstruction and diversion? From the Cleveland Clinic
When the urinary bladder is removed (due to cancer, other medical condition, or because the organ no longer works), another method must be devised for urine to exit the body. Urinary reconstruction and diversion is a surgical method to create a new way for you to pass urine.
The link to the article is on the actual page. I didn’t copy it over here again since it’s already posted.
There are LOTS of very good articles linked from the BLC Information page and they are pretty well organized. General Info, Non-Invasive, Invasive, Treatment Guidelines, Staging & Grading, Caregivers, Survivor Issues, and BLC Links.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.GuestJune 6, 2009 at 5:04 amIt is…it just keeps getting hidden..
Its interesting but i’ve been around so long this is maybe the third time i’ve seen this discussion on diversions..if you look back…waaay back in the history on the forum you’ll find pages on it.
But essesentially the remarks are very similar…everyone seems pretty well satisfied with what they’ve got with the exception of a few women who wish they had gotten all the facts about the downside of a neo that only happens to them..not the men.
PatGuestJune 6, 2009 at 3:13 amThis should be made a permanent link somewhere
Here’s a great summary of pro’s & cons someone originally posted on & I book marker it.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.To Rah-I am happy to hear from a man who is as proud of his bag as I am. I agree with everything you said. I actually did not have a choice of diversions since I was diagnosed with ulcerative colitis just prior to my RC and the doctor, wisely, would not consider the other two. I was diappointed at first but now realize that for ME, the bag is the way to go. No, it is not natural but it is so easy, convenient, and as Rah said, I can do everything I did before the surgery. I am very active and not a couch potato. I hike, travel, work in my garden, and swim though not in a bikini but who needs an excuse not to wear a bikini at 60.
To Ray-Again everyone seems happy with whatever diversion they choose. You are a young man and I can understand wanting to remain as natural as possible. As a woman, my biggest negative to a bag is the fear that someone will attack me in the restroom for standing and facing the toilet to urinate. LOL I am sure that sooner or later I will be caught in the act.
I wish you the best in your decision and your surgery.
Balihigh
female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduitRay,
I am an owner of an Illeal Conduit. I have read many opinions and the experiences of those that have either Neo Bladders or Indiana Pouches. As educated as I am now on the advantages and disadvantages of all three; I would still choose an Illeal Conduit as my diversion if I had to again.This is a long winded post. However since you will may be making a life altering decision on the type of diversion that is best for you, I am sharing MY experience as one person view of the Illeal Conduit.
Below is a partial posting I have placed on Melodie’s Bladder Cancer Warriors website:
An Illeal Conduit is a diversion that allows urine to flow directly from the kidneys to outside the body. After the bladder is removed, the surgeon cuts out a section of the intestine and connects one end to each kidney and the other end sticks out the side of the body and is sewn to the abdomen. The portion that sticks out is called a stoma.
Surgeons have different philosophies on how much stoma should stick outside the abdomen. Most doctors create a stoma that protrudes 1/4 inch above the skin, however, my surgeon prefers to create a stoma that protrudes about 2 inches above the skin. His reason is he has found less chance for infections. After surgery I met with the Stoma Nurse to learn how to place the Urostomy Pouch over the stoma. The pouch is an adhesive shield that has a hole in the middle that adheres to my skin. Then I connect a bag to the pouch. The bag connects to the pouch like a Tupperware lid connects to a bowl. However, I do not have to burp my bag for a tight seal. There are some manufacturers that make a one piece pouch / bag combo.Because every body shape is different, there are several different designs, shapes and sizes of pouches. The Stoma Nurse provided me with four different types from two different Urostomy Pouch manufactures. It took me about a month to find the pouch that fit my needs best. Most had a problem with leaking along the edge. With the style I now use I can go one week between changing the pouch (no leaking too).
The Illeal Conduit diversion is the oldest method for diversion out there. I am really glad that I have this diversion. I feel that it meets my lifestyle needs. Being happy with the diversion that we have seems to be a common theme. In Bladder Cancer Forums I have read where nearly everyone advocates the diversion they have. This is good news. Even though I would choose this exact same diversion again, it is nice to know that the other two would have most likely also met my needs.
I am going to now share the challenges I have with my Illeal Conduit diversion. Wearing a belt causes leaks. My stoma is located about 4 inches to the right and 4 inches below the belly button. When I wear a belt and stand and sit then stand again throughout the day, sometimes my belt will catch on the bag and undo the Tupperware lid. Then I have a leak with smelly and wet spot pants (before I realize and reconnect the bag to the pouch). I could probably change to a one piece Urostomy appliance, but instead I just wear suspenders. Another disadvantage with this diversion is the ability to be a swim wear model. Even though I am 50 now, I never gave up hope that Speedo would be calling me for my services. With a bag hanging at the Speedo line, modeling is not a viable option.
I feel the biggest disadvantage to this diversion is the hair growth below the pouch. Every week when I change my bag, I do it just after I shower. While showering, I shave the hair that is below the pouch area. Now when I step into the shower and remove the old pouch I have a scratch fest. The growth of hair really itches at this point. So, I lather the area with soap and scratch like a flea infested dog. It feels so good. After drying the area where the pouch will be placed, it takes about 2-3 minutes to put the new pouch over my stoma. Wow! I only have three negatives about this diversion, there must be more. A negative that some may have but I don’t is an allergic reaction to the adhesive that is on the pouch. Also, pouches last between 3 and 9 days depending on the individual. I have good insurance that pays for my urostomy appliances, but if someone doesn’t have medical coverage, they are spendy.
Now here is what I feel are the advantages of having an Illeal Conduit diversion. First, I don’t have leaks (since I don’t wear a belt). This is really nice. Never having to worry about being wet contributes to the quality of my life. Second, I go to bed at night and sleep 8 hours without having to get up to relieve myself. This is done through the magic of a night bag and gravity. Even though this would be a great science project for my kids, they have never asked me to come to their school for Show-and-Tell. The night bag is a large bag with a five foot hose connected to the top. I tie the bag to my night stand next to my bed about six inches below the top of the mattress. A quick disconnect attached to the five foot hose connects to the valve on my bag. I open my valve, and gravity takes care of flow of urine. I can toss and turn all night with the five foot hose providing plenty of slack.
I have learned to live a life using a different method of diverting my urine without it affecting how I live my life. I can do everything I could do before …. ride a bike, swim, jog, stand at a urinal at a sporting event, and have a great night sleep. I did attempt to try one thing that didn’t work out. I was driving this past summer up and down the east coast visiting my 22 year old son (he plays minor league baseball). I hit 10 states in 4 days. I wanted to see how long I could drive without stopping. I had my night bag with me; connected. I figured I could last as long as the gas tank lasted. This didn’t happen. I didn’t take into consideration that my 16 year old son riding with me only had a three hour bladder.
I hope that if you choose or have to have an Illeal Conduit, your experience is at the quality of life that you desire. Remember, it is in the bag.
Take Care, The Bagman of Marysville
RickGuestJune 5, 2009 at 4:07 pmWhen Hal is good, do you give him a treat?
Hey Strange
Get the neobladder if you can. At first it is a little tough to get used to but as time goes on it is the ONLY way to go. life returns almost to normal. If you Surgeon is talented, this is the best option. My mantra for finding a surgeon is: You want a MECHANIC…A person who does this operation on an almost assembly line basis. This is tricky stuff but a surgeon that does many different surgeries may have a harder time switching from one to another. Just my thought…definatly not a scientific analysis.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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