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Anyone here have an Illeal conduit? Colostomy?

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  • Anyone here have an Illeal conduit? Colostomy?

    The love of my life broke his neck in 1992. So, 22yrs+ post injury. C5/6 incomplete. He used a condom catheter until 2006. Indwelling catheter placed during emergency surgery to remove kidney stone stuck in right ureter where it connected to bladder in 2006. Woke up from that surgery with incredible burning pain in his bladder that has never subsided. In 2008 he got a suprapubic catheter. Again the burning pain, pressure, and reflux to his kidneys has never subsided. Since getting the suprapubic he has been treated with IV antibiotics twice for Pseudomonas. Easly we want to reduce or eliminate the infections to extend the quantity of his life. However, the pain is robbing him of the quality of life. If anyone has an illegal conduit, we would love to hear any and all details, the good, the bad, the ugly. We know that if we do this there's no going back. Try Botox injections to his bladder walls once and it didn't really help but for about a week and even then it only took the pain down from a constant eight to about a seven. Since his last trip to the hospital for treatment of Pseudomonas the pain is still higher than ever and constantly 10 out of 10.

    The doctors are suggesting an Illeal conduit. He already has a colostomy and has since 2009. The colostomy has been great.

  • #2
    I had an IC and cystectomy (bladder removal) in 1970 because of problems somewhat worse than your husband's. For me it was a life changer. I have not had a UTI ever since. However, that outcome is probably exceptional. The last time I reviewed literature on the procedure the conclusion was that about 1/3 of the patients improved. In my case, it was done as a last resort.

    It is major surgery. The first two weeks or so following surgery are hell and leave you wondering what you have gotten into. After that recovery becomes more noticeable. There is some anxiety until the right urostomy appliance is found. You probably went through a similar experience with your husband's colostomy. I change my appliance every 4 days and management is much easier than the alternatives.

    Throughout my rehab and career I have known about 20 SCIs who have an illeal conduit. Interestingly, not one had a colostomy too. I will be glad to respond to any specific questions you have.

    I closing, near the end of your post you referred to an "illegal" conduit. Mine was legal but they are probably the same. lol
    You will find a guide to preserving shoulder function @

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    • #3
      I have one and love it! No more cath or the issues that they raise, in the 3 years i have had it i have been hospitalized i think 2 or 3 times for severe kidney infections where before it was at least monthly. I will also be willing to answer any questions but as sci55 has said major surgery and my recovery was basically the same. However he has a colostomy as well so the learning curve will be less!
      T6 Incomplete due to a Spinal cord infarction July 2009


      • #4
        I am letting the experts do the speaking on this one.
        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.


        • #5
          I am a C-6,C-7 . Problems same as you . Had a Illeal Conduit done three years ago . Perfect ! One U.T.I. a year , or less , no pain , no joke . Just Quality of life back . So I recommend it . The bad side ? Actually none , really . Good Luck !


          • #6
            I'm considering that also have a suprapubic sense 1989 And have been plagued with bladder stones for the past two years have every five months or so. Those stones cause severe amount of pain, just like the Pseudomonas which have had many times, so I understand that
            C4 incomplete since 1985