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Asking for your experience
I have just finished chemotherapy and I am in the process of scheduling surgery to remove my bladder. My doctor mentioned the most recommended procedure is An ileal conduit. I just can’t seem to wrap my head around the fact of having a bag attached to my abdomen. It seems so foreign and I can’t imagine how my husband will look at me when we are with each other. Not to mention, I keep wondering how it’s going to look through some of my clothing. I can’t seem to get this out of my head I would like to hear some of your opinions or experiences for those that have had this procedure done.
I just keep getting questions popping up in my head… How do you take care of it in the shower or when you go swimming, how can I even imagine being intimate with my husband, how do I empty it if I’m at work, and, I seem to be reading a lot about people having leakage… What is with that?
I just wonder if there is in a better way to go about this. My doctor did say this procedure is the one with less complications and problems. He also mentioned that they take a lot more than just the bladder. I am just very sad, although I do realize taking the bladder is the best way to be sure we’re almost sure that the cancer will not return. I guess things could be worse but this certainly is not a fun journey.
Anything that you can share will be helpful.
Thank you,
Deb -
10 Replies
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Well she asked……
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Deb and Cynthia…Shame on you both!!!
B) :laugh: B) :laugh: B) :laugh:
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thank you Cynthia… Good info to think about!
I’ll relay the message to Sarah Anne, and ha ha Ha I promise to carry-on these conversations in the other forum… Sorry guys!
Deb, We know how hard it is to need to learn a lot fast. Ask everyone questions that is your job and if you can have someone take notes it helps also keep track of your paper work get copies of tests and pathology reports. Here is a link to Penn Med.
https://www.pennmedicine.org/cancer/types-of-cancer/bladder-cancer
As for the answer how to make something not sexy more so, think Mae West and preplanning. A pretty camisole and candle light can hide a lot whether it is age related or surgical. As for the bag itself some have covers made for them as it is more comfortable against the skin and well nothing ever looked worse covered in satin. By the way tell Sara Anne not to make fun of me I am not Dr. Ruth. All joking aside if you have any questions about sexuality just post them in the woman and bladder cancer section and we will talk, we have made the men blush enough already.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thank you Cynthia..you have helped in the way of being positive. I am so glad to have come across this forum where I can talk to others that either are or have been in the same situation as myself. I will definitely remember to ask the doctor these specific questions about the Indiana pouch as opposed to the ileal conduit.
I live in central Pennsylvania and do not even know how to look for another surgeon for a second opinion. I would hope that my surgeon would be able to recommend a few. Hi ended up with this current surgeon because he is in the same practice as my urologist. What are your suggestions on that?
Lastly, out of curiosity, can you give me an idea how you can make an external appliance appear more sexy… I find that very unimaginable. :)
Deb
Deb,
Welcome to our community. The type of diversion one receives can depend on a lot of factors. There can be medical reasons such as tumor placement to name just one. Doctors preference can be another, all Urologist are taught how to do the Ileal conduit other types of diversion require further training and practice. Another is the patients preference, all things being equal medically ask your doctor about why he does not think you are a candidate for another type of type of diversion.
There are pros and cons for all type of diversions. I have an Indiana pouch I had all of your fears and an allergy to adhesives. I had to look for the right Urological Surgeon afrer talking to three of the best, I traveled from MA to Chicago Ill for eight weeks in 2006. The thing about diversions is that you do not want anyone to do one for you that does not have a lot of practice. My local guy only did three to five llael conduits a year the one who did mine did three to five a week…true story. I had pelvic radiation prior the Radical Cystectomy and that made it harder to find the right person it might be easier for you, let us know what state you are in if you want to seek a second opinion. The point being if you are able to and you wish to look into other diversions you may have to get a second opinion.
For me a Indiana pouch has worked well. I have a stoma in my naval, use a catheter about every four hours. I find it convenient it is continent and if you didn’t know me you wouldn’t know I had it. I carry a makeup pouch in my purse with disposable supplies. I can honestly say it has not impacted my life that much. Yes there was healing and getting used to it but you do get used to it. And the same can be said with the other diversions. Some times we do not get to chose what type of diversion you get for the reasons I mentioned above, but we adjust. My Mom had a saying “make the best of what you have”. There are ways of making an external applicance more sexy if that is imaginable we can talk about things like that when and if they become a consideration. That is what we do here trade information offer support.
I hope this helps a little if you have questions ask away.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thank you again Sarah Anne… You definitely gave me food for thought which will help me ask more questions when I meet with my surgeon. I will also discuss this with my husband to see what he thinks as well.
Deb
I have not had a cystectomy. Fortunately, my high grade CIS has been kept in check by BCG now for almost 9 years. However, as you can imagine, I have done a lot of “what if” thinking! And I am not sure whether I would go for the Indiana or the ileal. Part of it would depend on how old I would be at the time IF IT CAME TO THAT.
I didn’t mean in my response to you to recommend one or the other. I just wanted to point out that the reasons for the recommendation of the ileal conduit may NOT be that of all the choices it is the right one for you, but that it might be the only one the urologist is comfortable doing. And this brought up the question of how “up-to-date” he might be.
Just something (more) for you to think about.Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thank you Sarah for your very informative reply. My doctor has done the procedure he is recommending hundred times. But now I am wondering, if like you say, they recommend the ileal conduit because it is the easiest. I guess I will have to ask him those questions.
What procedure did you have and what was your experience.
Deb
Sorry to hear your news, and I can understand your concerns. I think that it is important that you consider getting a second opinion at a center that treats LOTS of bladder cancer patients.Yours is not the most common type and not all urologists are really trained to treat it.
I really like my urologist and have full faith in him. However, he told me that if it ever comes to my having to have a cystectomy he would INSIST that I get a second opinion; this is too important not to.
As you may have read, there are three general types of urinary diversions after bladder removal. Here is a good summary of them
http://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion
The first, the ileal conduit, is the simplest surgery as your doctor has mentioned. And therefore it is the only one that a lot of urologists are competent to do; this is why they “recommend” it….they really can’t do the others. In some cases due to the location of the tumors or the poor health of the patient it is the best option. Patients do manage quite well with an abdominal bag.
However, there are other options. The Neobladder is perhaps the most complicated surgery and has been problematic in women. Women often are not as successful as men and can have problems either being incontinent or hypercontinent.
The Indiana Pouch is sort of a hybrid and has been quite successful for women as well as men. Cynthia, our president, has this diversion and if I didn’t know her really well I would never know she had it.
There is nothing outside the abdomen.This is the rest of your life and you want to find a surgeon who can offer you more that the simplest option, if that is what you want. You want to find a surgeon who does MANY of these operations, not just one or two a month….otherwise he is really practicing on you.
You have had your chemo and you do have a little time to do your research and make some decisions about which surgery YOU would prefer. You will be living with it for a long time.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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