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Thread: Bladder augmentation + mitro was a mistake

  1. #11
    Senior Member wtf's Avatar
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    Thanks Mimin for sharing your experience, I've thought about getting this operation and the pro's definitely outweigh the cons but I still can't get myself to do it. If I had problems (uti's, more independance) I would probably lean more to it but since I don't I can't justify it at the time. I think when I'm so much older (70's) I'll get this and a colostomy for convenience. I'm sorry you're regretting your decision, maybe it will get better, I hope so.

  2. #12
    Hey Mimi

    Im so sorry you are still having rough times with this.

    Like a few others on here have said, try irrigating with saline daily. Thats what the uro told me would be needed if I considered having this surgery (am too much of a chicken so far. I read your whole post about you op over and over trying to talk myself into it!).

    I havn't got much other useful advice. Just wanted to say You are totally not retarded for waiting 10 months to reach this conclusion and post on it. It is natural to wait and expect things will get better with time. Hopefully they still will for you!

    Lots of love and positive thoughts. xoxoxoxoxooxxoxo
    "The impossible is just that which hasn't been done yet.Impossible is nothing"

  3. #13
    So I was thinking more abot what Mimi has experienced, and realised I have read various medical articles in relation to some of these things and whether/ how bladder augmentation should be done. I realise, sorry mimi, that this info is probably more use before surgery but possibly worth discussing.

    1. Scars: Ok so drs may not thinks this is so important, but it can have a huge impact on young sci women like mimi and lots of us. I have read that it is possible to do an augmentation and mitro laparoscopically. this leaves just 2 tiny incisions,one in the belly button and the other on the abdomen.The literature also says this method improves healing time and pain. Here's some links
    http://books.google.com.au/books?id=...um=9&ct=result

    http://www.liebertonline.com/doi/abs...26410050167404

    But then I found this article which says laporascopic methods are tecnically arduous and may not have long lasting results.
    http://www.surgeryencyclopedia.com/A...mentation.html

    Dr Wise Young,sci nurse, have anyone of you had any experience in relation to this?

    2. Mucous. A clinical study is underway in sci patiebts where the flap used to augment the bladder is grown from the patients own cells, rather than using an bowel/stomach segment.The main benefit, of course is that it does not produce mucous and possibly less uti's. It is the patients own tissue so less issues with rejection.There is a thread about it on here somewhere.Phase one of the trial was on patients with spina bifida. They started phase II- sci - in 2007.Does anyone know how this is going? On the clinical trial website it says the study is estimated to end in dec 2009.

    If it is successful, when would we be likely to be able to access the surgery?
    Some links
    http://clinicaltrials.gov/ct2/show/NCT00512148
    http://www.accessibility.com.au/news...njury-patients

    Look forward to any info people have to offer

    xoxxoxo
    "The impossible is just that which hasn't been done yet.Impossible is nothing"

  4. #14
    Senior Member Mona~on~wheels's Avatar
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    Sorry Mimi, it makes since to wait and make sure
    it doesn't get better before saying anything.
    I'm hopeful the advice others have gave helps you out alot!
    Working on one problem at a time you get them solved.
    I only have morning & night help. That's why I have to have sp catheter.
    Good luck sweetie!

  5. #15
    Banned adi chicago's Avatar
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    Sorry to hear mimin ....I am afraid of surgeries and side effects like hell.Some help us some not.Good luck and be strong.
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  6. #16
    Thank you for all the replies.

    I do flush with saline a few times a day... doesn't make a difference. Everything has its disadvantages. When I had the sp cath after the surgery, I complained cause it smelled and I was always afraid it would pull off and urethral cathing sucked cause I had to lie down. So which one is the best? I don't know.

    Miss September, I think the info you posted was great. I hope to hear good results from those trials. And thx for your kind words

    wtf, by the time you're 70, we'll have a cure!!!

    I know that the majority of ppl who did this surgery were very happy w/the results so I don't want to dissuade anyone from doing it.

    Thx again peeps. It was good to let it out!

  7. #17
    Also, Emi, I've been leaning toward colostomy. I know your hubby is against which substantiates my fears that a colostomy would be a big turn-off. Maybe when I'm 70...

    Kristi, it was also my small intestine that was used. I'm not sure where my appendix is...in/out?

  8. #18
    Senior Member jessie.gray's Avatar
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    Quote Originally Posted by mimin View Post
    Also, Emi, I've been leaning toward colostomy. I know your hubby is against which substantiates my fears that a colostomy would be a big turn-off. Maybe when I'm 70...

    Kristi, it was also my small intestine that was used. I'm not sure where my appendix is...in/out?
    Your appendix is on your large intestine. Sorry you have been having so much trouble since your augmentation. My doc and I decided against the augmentation and wrote a very detailed letter to my insurance so they'd cover the Botox injections. Haven't got them done yet (will have it done of Dec. 16), but I am hopeful that they will help. I regretted my mitrofanoff operation, because I've had such a hard time with urine leaking out of my belly button all the time, despite being on 3 different bladder medicines (Ditropan, Enablex and Imiparine), cathing 10 times a day, and irrigating once a day.

    As far as a colostomy, this is the one surgery I was happy about. Sure, I needed to have to done because 1/2 of my colon stoped working and was starting to tear, but it has freed me from constipation, bowel programs that don't work well, and the intestinal infections. I had my entire colon taken out and have an ileostomy. I still have 1 1/2 inches of rectum left, which I plan on discussing removal of due to diversion colitis. Plus, its not that big of deal to have a bag on your belly 24/7. Most of the time, I forget its even there until it fills up 1/3 and starts to feel heavy.

    Jessie

  9. #19
    Sorry to hear you're having problems mimin.

  10. #20
    Quote Originally Posted by Miss September View Post
    So I was thinking more abot what Mimi has experienced, and realised I have read various medical articles in relation to some of these things and whether/ how bladder augmentation should be done. I realise, sorry mimi, that this info is probably more use before surgery but possibly worth discussing.

    1. Scars: Ok so drs may not thinks this is so important, but it can have a huge impact on young sci women like mimi and lots of us. I have read that it is possible to do an augmentation and mitro laparoscopically. this leaves just 2 tiny incisions,one in the belly button and the other on the abdomen.The literature also says this method improves healing time and pain. Here's some links
    http://books.google.com.au/books?id=...um=9&ct=result

    http://www.liebertonline.com/doi/abs...26410050167404

    But then I found this article which says laporascopic methods are tecnically arduous and may not have long lasting results.
    http://www.surgeryencyclopedia.com/A...mentation.html

    Dr Wise Young,sci nurse, have anyone of you had any experience in relation to this?

    2. Mucous. A clinical study is underway in sci patiebts where the flap used to augment the bladder is grown from the patients own cells, rather than using an bowel/stomach segment.The main benefit, of course is that it does not produce mucous and possibly less uti's. It is the patients own tissue so less issues with rejection.There is a thread about it on here somewhere.Phase one of the trial was on patients with spina bifida. They started phase II- sci - in 2007.Does anyone know how this is going? On the clinical trial website it says the study is estimated to end in dec 2009.

    If it is successful, when would we be likely to be able to access the surgery?
    Some links
    http://clinicaltrials.gov/ct2/show/NCT00512148
    http://www.accessibility.com.au/news...njury-patients

    Look forward to any info people have to offer

    xoxxoxo
    Miss September and Jessie,

    Thank you for your informative discussion. The two approaches that you discuss indeed have major advantages. Laparascopic approaches would reduce the scar but I doubt that augmentation surgery can be done laparoscopically. It would be sort of like sewing a dress through a keyhole. There is of course much interest in using other tissue beside the colon and small intestine, both of which secrete mucus and other materials that tend to clog up the catheterization. In the coming years, other materials will replace the intestine/colon.

    Regarding the leakage that occurs when no augmentation is done, one possible approach that may be useful is intravesicular instillation of ditropan, which may reduce the bladder spasms more than oral doses can (Source). While there is some skepticism about the use of intravescular ditropan, some recently studies suggest that most of the ditropan is absorbed and sequested by the bladder without going systemically (Source). Here is a detailed and conservative discussion of the many pros and cons of the various approaches (Source). All the approaches have their problems, including capsaicin.

    Several years ago, Anthony Atala at Wake Forest University announced that he successfully created a laboratory-grown bladder that he then implanted in a human (Source). Previously, clinicians had fashioned "artificial" bladders from intestines or other organ walls. Unfortunately, intestines tend to absorb fluids and also secrete mucus and other stuff. The new bladder produced by Atala used actual bladder cells from the patient to make the newly grown bladder (Source). That was of course 2 years ago. He published a review this year:

    Atala A (2008). Bioengineered tissues for urogenital repair in children. Pediatr Res. 63: 569-75. Institute for Regenerative Medicine and Department of Urology, Wake Forest University School of Medicine, Winston-Salem, NC 27157, USA. aatala@wfubmc.edu. The most common congenital abnormalities involve the genitourinary system. These include hypospadias, in which the urethral opening develops in an improper position, and bladder exstrophy, in which the bladder develops on the outer surface of the abdomen. Children with these conditions will require immediate and multiple reconstructive surgeries. Currently, reconstruction may be performed with native nonurologic tissues (skin, gastrointestinal segments, or mucosa), homologous tissues from a donor (cadaver or living donor kidney), heterologous tissues or substances (bovine collagen), or artificial materials (silicone, polyurethane, teflon). However, these materials often lead to complications after reconstruction, either because the implanted tissue is rejected, or because inherently different functional parameters cause a mismatch in the system. For example, replacement of bladder tissue with gastrointestinal segments can be problematic due to the opposite ways in which these two tissues handle solutes-urologic tissue normally excretes material, and gastrointestinal tissue generally absorbs the same materials. This mismatched state can lead to metabolic complications as well as infection and other issues. The replacement of lost or deficient urologic tissues with functionally equivalent ones would improve the outcome of reconstructive surgery in the genitourinary system. This goal may soon be attainable with the use of tissue engineering techniques.

    I don't know if it is available for adults.


    Wise.
    Last edited by Wise Young; 11-24-2008 at 01:45 PM.

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