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Thread: Ileal Conduit same as a Urostomy?

  1. #1

    Ileal Conduit same as a Urostomy?

    I have a simple question that even my research can't seem to straightout answer yes or no. Is an Ileal Conduit the same thing as a Urostomy?

    I was diagnosed with superficial bladder cancer and it was removed but I had a bladder neck closure done last year and an SP catheter. Then, several cystoscopies later and less than a year later I was diagnosed with a suspicious looking growth on my bladder so they did a bladder biopsy on February 25th of this year. My urologist says it is all up to me and he is suggesting me to consider an Ileal Conduit but also told me that there was a huge risk and I would be in the hospital for at least a week. I am now without a husband, no parents, no children and feel so alone.

    To add insult to injury... the last link to happiness (my US Certified Golden Support/Companion Furbaby) was diagnosed with the worst possible cancer ever and I have to put her to sleep very soon before it ruptures. My husband and I adopted her together.

    C-4/5 Complete Quad, 38 years post

  2. #2
    Urostomy is more of a general classification of surgeries to create artificial diversions when normal urination can not take place. Normal urination is when the ureters carry urine into the bladder and the urethra carries urine out of the body.

    Urostomy surgeries include Ileal Conduit, Continent Urostomy, Bladder Reconstruction, Ureterostomy.

  3. #3
    Brinda -

    I know you are going through a lot and you have my heartfelt sympathy. That being said, one way to get back to being happy is to get healthy.

    It seems to me that you know the two paths you can take. Which one you decide on is up to you. I would be curious to know what your urologist considers a huge risk? This is a major surgery but most people do well with it. yes, you will be in the hospital for 5-7 days, but some of that time is getting able to take care of your ostomy.

    Have you written down a list of questions for your doctor? if not, I would suggest that you do that. Then schedule a time to see or speak with him on the phone or in person. I would encourage you to have someone be there with you to listen and take notes.
    This discussion may help you to figure out the path by itself. If not, do a pros and cons list.

    If you need any other suggestions, please do not hesitate to ask.

    ckf
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  4. #4
    My urologist has to refer me to another urologist in the area who does these [Ileal Conduit] surgeries and to remove my bladder. Because my bladder cancer was "superficial" and did not invade the bladder it will be an 'elective surgery' before any cancer cells in the semi-near future or future spread.

    He is very open to answering questions but the decision is still ultimately mine. I have met with him once about it and since then done my own [online] research but finally came here to look for personal experience. I think most other quads are living with some sort of family or significant other to come home to or have a lower-level injury whereby they are more independent whereby I do not... only myself and my live-in caregiver.

    I am just so worn out from the last 2 years without family and soon without my beloved Golden Retriever to come home to so this is just awful and I can't believe that all of this is happening.

    I had the Bladder Neck Closure surgery and SP catheter put in last year (June) because for the first time in 37 years in a home health agency nurse blew up the balloon in my urethra and left it there for almost 45 minutes because she left and I was on my own for the first time (except for my new live-in caregiver). My first live-in caregiver was not yet familiar with my catheter changes and this was all new to me. Unbelievable, that the first time I was not living with a family member and even explaining to the nurse step-by-step how my catheter needed to be changed (quite simple actually) that not one single nurse out of thousands of catheter changes had ever blown up the balloon in my urethra and therefore damaging my urethra beyond repair. I tried to get compensation for what that nurse did to me and therefore contacted an attorney. He said he would take me on IF I needed surgery (which I did) but it eventually turned out to be nothing since it could not be "proven."

    After the Bladder Neck Closure surgery and an SP catheter put in I got used to it and I was looking forward to everything being resolved and getting on with my life.

    When I had a urethral catheter that was perfectly fine for 37 years along with my bladder and urethra being in "pristine" condition I never wanted an SP catheter but so many of my quad friends love them and I had to do something so since the Bladder Neck Closure surgery would only have me in the hospital less than 2 full days including the creation of the stoma... I thought I wouldn't have any problems so that is what I did in June 2017 which is the soonest I could have had it done. Then back in November 2017 (5 months after the Bladder Neck Surgery and learning to live with the SP catheter) when my urologist did a cystoscopy to remove any sediment or small stones (that I have always been prone to) he found a suspicious looking growth and therefore wanted to do the bladder biopsy in February of this year. He didn't think it would be anything but within 3 days but lab showed it was "superficial bladder cancer."

    I don't have the greatest insurance so I had to pay enough for all of that and all of his follow-up cystoscopies to change this new catheter and remove any sediment present. I got a bladder infection each and every time he did cystoscopies (for the first 3 postoperative catheter changes) despite a prophylactic antibiotic for a few days surrounding them.

    I now have to face not only this big surgery but the expense of the physician, the lengthy hospital stay, the anesthesiologist, medications, etc. etc. etc. Ironically and disappointingly I got the bill for the bladder biopsy procedure on February 25 four $47 today. I already paid for the outpatient procedure and the physician which was over $1000. I also got a bladder infection less than a week after this procedure and it turned out to be Staphylococcus Aureus (MRSA) which had to have gotten from the hospital since I did not have it before. It is a nosocomial infection and it is no coincidence. My urologist and Nitrofurantoin but it didn't work so now I am on Doxycycline. It is, as most of us know, resistant to so many other drugs. I wouldn't be surprised if I had to go and IV Vancomycin and my insurance does not cover that.

    In another thread from 2015 re: a girl inquiring about having an Ileal Conduit ... an SCI nurse explained everything that it entailed and I simply don't feel I can go through with it but if I don't and any cancer comes back... there is not a urologist in the area who live and operate on me. I wouldn't have to travel 2 hours north and be completely out of my element. The thread I read last night was: http://sci.rutgers.edu/forum/showthr...=ileal+conduit

    I just sit here day after day watching my Golden Furbaby fail more and more so I have to take her in soon. Since she is the last link to my independence with living with family for 36 years I can't stop crying. I don't know how I am going to come home to an empty house after having her with me since 2009. Sure, I have lost another dog but it was with my husband and I had him too grieve with and to come home with. I am overcome with too many decisions in such a short period of time.

    Not a 2018 expected or to look forward to!

    ---------------

    * Injured at age 15.

    * Lost my father when I was only 13 (cirrhosis of the liver from being an alcoholic).

    * I was in the hospital after my accident for 13 whole months before being able to come home and when I was in rehab my mother was diagnosed with terminal pancreatic cancer and died only 6 months after I came home and I was only 16.

    * I finished high school and went on to college and got a BS in the Liberal Arts and Business. I lived in a very small town so I was hoping to get a job at IBM since my town was where it was founded and still going at that time but my resume sent to them did nothing. I took a job at an Independent Living Center that only required an Associates degree. Not even 2 years went by when I began to have abdominal cramping and increased spasticity that got worse and worse. Therefore I thought something was wrong inside my abdomen but after months and years of testing and everything be normal kept on working but working in misery. One day when I was with my, my husband and I were out for a ride we stopped at my sister and brother-in-law's house and she asked me if I was okay. I said yes. She then said "I am asking because your right pupil in your right eye is dilated. It stayed that way (I can't remember how long now) but I knew after years of knowing something was wrong that I had had it. I finally called Craig Hospital and a neurosurgeon (after hearing about my right eye dilation) told me it sounded like "Posttraumatic Syringomyelia" and to have an MRI. I had never heard of such a thing and was scared to death. All I knew was that I was tired out and, by then, going for years with abdominal cramping and increased specificity and lost my endurance so I decided to retire early which was only 7 years after graduating from college and working.

    * I would still be working had I not been diagnosed with "Posttraumatic Syringomyelia" which turned out to be more disabling than quadriplegia alone. I had been with a man (common-law husband) for 11 years but he decided to move on after 13 years. Soon afterward I found the love of my life but he passed away unexpectedly only after 15 years of marriage in June 2012.

    My sister and brother-in-law then took me in but, only after 3 years, wanted me to "move on" knowing I had nowhere to go. That is a story in itself since my mother planned my 2 sisters helping to care for me and putting an addition on to my one sister and brother-in-law's home but I ended up moving in with my grandparents because of the location of that particular sister and brother-in-law's home (way out in the boonies where I couldn't get out).

    For the 3 years at my other sister and brother-in-law's (a 4-bedroom ranch) between September 2012 and the summer of 2015 when they asked me to move on and to my ultimate horror - the plan was that I hired morning and evening caregivers 7 days a week and with the rest of the family (my two sisters, two adult nieces, my brother-in-law) helping to share their care as far as driving me in my own vehicle (my husband had bought a brand-new one for us just 2 months before his passing as we were looking forward to continue on with our life and Furbaby), me eating with them (I can feed myself) and having my sister give me my medications, take me to my few and far between physician appointments, write out checks to pay my bills for things I had to buy, etc. They wanted more freedom even though my other sister would come and stay with me if they wanted to go somewhere which they did.

    After my mother passed away, my grandparents took me in without question and asked me to live with them until they died. I was there until my grandfather died but after meeting my fianc?e and him moving in with me and my grandmother... we eventually went out on our own but living only 5 minutes away from my grandmother on the property that we all grew up on. Well, enough rambling.
    Last edited by Brinda41; 04-24-2018 at 05:11 PM. Reason: Typos

  5. #5
    SCI-Nurse - I forgot to answer your question re: my urologist considers this surgery to be a huge risky one. This is because Pneumonia, C-diff and MRSA are running rampant through the hospitals. He wanted to get me out of the hospital as soon as he could when I chose to have the Bladder Neck Closure surgery and switch to an SP catheter because of C-diff and especially with a quadriplegic as far as lung capacity and so many other things. He said I couldn't go home until I was okay but I was just fine after less than 48 hours.

    Then, on February 25th of this year when I went in to have the outpatient bladder biopsy done on those suspicious looking polyp she saw my bladder back in November of last year, I came out fine but like I mentioned in my other response -- it was less than a week where I had my classic bladder infection symptoms so I requested a C&S and it came back with Staphylococcus Aureus (MRSA) so without a doubt and having been nowhere else I got it from the hospital procedure and have not yet been able to get rid of it.

    When he asked me to come in approximately 3 weeks ago to tell me that I would probably want to consider having an Ileal Conduit done (he wanted to tell me this in person) to not only avoid further bladder cancer but I also would not have any more of my bladder infections. After talking to a couple of people who had it done and reading about it here... they have said that it doesn't completely get rid of infections.

    A girl that I know (another quadriplegic) has had it done here and I have been corresponding with her via e-mail and told her that my urologist said I wouldn't be getting any more bladder infections and her response to that was "I had some UTIs so I don't know why your urologist would tell you that." She had hers done by the urologist who would be doing mine if I go ahead and have it done in 2015. Then just three days ago after telling me she had gone for a long time without having any UTIs but just had one with a fever and ended up in the ER and was put on Cipro. She is okay now. What confuses me is if she no longer has a bladder... how can she have a bladder infection.

    Hanging in there. Barely.

  6. #6
    She probably has a kidney infection - not a bladder infection.

    I really don't know what advice to give you. Is there another urologist that you could see for a second opinion. I know that it might cost some money to do that, but it might be worth it in the long run. Truly just a suggestion.

    I have had to put down 3 dogs so I know the pain that you are going through. It is losing another family member as well as the memory of your "family" - your husband and Furbaby. You probably do not want to hear this now, but there might be another furbaby in your future to help you make positive memories. It is very difficult to make the decision, but do know that others, both here and elsewhere are available for support.

    Thinking of you and all you are going through-

    ckf
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  7. #7
    yes basically the same thing. i had mine done in 2011 and it basically saved my kidney function! before i had it done my function was decreasing on a monthly basis by like 10-15% since i have actually gained a bit of function and have been stable at 40% of function now for the last few years. i still go for yearly ultrasounds and bi annual visits with my nephrologist but overall he is very happy at the results as am I, now don't get me wrong there are times i wish i didn't do it, like when i am having a ton of skin issues like i went thru a few months ago but overall i am very happy with it. and like i said if i didn't have it done i would have been on dialysis in 6 months to a year. i should also add my bladder is still in my body as i didn't have it for cancer. it is no longer used and is about the size of a pea now and will be that size for the rest of my life, it isn't reversible.
    T6 Incomplete due to a Spinal cord infarction July 2009

  8. #8
    Senior Member darty's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    Brinda -

    I know you are going through a lot and you have my heartfelt sympathy. That being said, one way to get back to being happy is to get healthy.

    It seems to me that you know the two paths you can take. Which one you decide on is up to you. I would be curious to know what your urologist considers a huge risk? This is a major surgery but most people do well with it. yes, you will be in the hospital for 5-7 days, but some of that time is getting able to take care of your ostomy.

    Have you written down a list of questions for your doctor? if not, I would suggest that you do that. Then schedule a time to see or speak with him on the phone or in person. I would encourage you to have someone be there with you to listen and take notes.
    This discussion may help you to figure out the path by itself. If not, do a pros and cons list.

    If you need any other suggestions, please do not hesitate to ask.

    ckf
    I just had my bladder removed and an Ileal Conduit done on the 23rd of March. My Urologist, Oncologist, Surgeon, primary and anesthesiologist were all concerned I WOULD NOT SURVIVE the surgery. I did survive and am doing well I month after surgery. C4/C5 Complete quad 37 years post. If you have any questions PM me.
    ^^(A)^^

  9. #9
    I understand risks of being hospitalized all too well, but she O look at the reason you are considering this, in my opinion, if it was me, I would not even be doubting myself. I realize that is my perspective and my situation. I am not saying you should think of it that way.

    Yes, pneumonia is a concern. Yes, your injury level is a concern. A-Rod can happen at home, although less likely to. And MRSA is everywhere. You said that you got MRSA the last time you were in the hospital. If you csn, it helps to minimize your chances of you are in a single room. No guarantees.

    I know that you are tired, lonely and scared and certainly have a right to be. I am just not sure what else to tell you.

    The more you labor over this decision, the more you will become paralyzed in trying to make it. I certainly am not telling you to rush into anything, but just advising you to keep in moving in the direction of making it.

    ckf
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  10. #10
    OK, thank you everyone for your concern and advice!!! This past Wednesday night the severe bladder pain and flank pain came back with a vengeance (even though I was still on Doxycycline) so since my home health agency nurse was scheduled to change my catheter and they wanted a fresh catch (as usual)... my urologist's nurse ordered a urine specimen to be taken for a C&S (Culture and Sensitivity) yet again to see if the Staphylococcus Aureus-MRSA diagnosis that was found back at the beginning of March (less than a week after my bladder biopsy that was performed as an outpatient in the hospital on February 25) is still there.

    I am so tired of this. I thought for sure the Bladder Neck Closure surgery along with an SP catheter that was done in June of 2017 would take care of everything (the terrible leaking around my urethral catheter because a home health agency nurse back in January of 2016 stretched my urethra beyond repair by blowing up a balloon in my urethra and leaving it there for the first time in 38 years) only to find out, via a cystoscopy done in November 2017, there was a suspicious growth on my bladder wall which turned out to be Superficial Bladder Cancer found this year. Just 5 months after having the Bladder Neck Closure surgery with an SP catheter.

    If I didn't have any bad luck, I wouldn't any luck at all. Sure this could be seen as a negative way of thinking but I have now lost everyone and everything for the first time in my life since I was 15 years old.

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