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Thread: is keeping my SP really that bad

  1. #1

    is keeping my SP really that bad

    I have had a supra pubic catheter for 4 years but my urologist who has a lot of patients with sci is pressuring me to get rid of it. He thinks he can just take it out and have me start cathing on my own which ive done before for the 1st month I was out of the hospital but I pretty much know my bladder has shrunk so much i'm gonna have to have an augmentation. He's done a bunch of augmentations before but im scared and keep making excuses and putting it off. Im supposed to see him in May, take out the sp and try to make it and if i cant he'll do the augmentation. My questions are is there any chance my bladder hasn't shrunk or can be relaxed or stretched back out, and is keeping a sp really that bad my urologist is saying the only way for me to quit getting kidney and bladder stones is to get rid of it and that it eventually causes cancer. I am a c5 but im really incomplete and my fingers work good enough I can do the cath, I probably wouldnt need the mitranoff as long as I wear loose clothing. I havent really had many bladder infections by themselves but I have had a lot of bladder and kidney stones and a couple of times my kidney has gotten obstructed by a stone and really inected. With my limited hand function its a lot more convenient just keeping the sp and i'd also like to avoid surgery, but I want to do whats healthiest.

  2. #2

    SP catheters

    Your urologist is correct that getting rid of an indwelling catheter generally would be one way to decrease your risk of urinary stones and infection, and also to reduce your risk of kidney damage from these, as well as reduce your risk of bladder cancer.

    After 10 years of indwelling catheter use, depending on the study cited, your risk of bladder cancer increases from 4X-10X over the general population, and if you smoke this is an even higher risk.

    Many people have gone to either intermittent catheterization or use of an external catheter after 4 years of indwelling cathter use. If you go with intermittent cath, it is likely to take you some time until your bladder would stretch out enough to be cathing only every 4-6 hours. It is also possible that you would have significant AD during this process. Sometimes an augmentation is needed. If you went to an external catheter you might have to have a sphincterotomy or urethral stent placed to drain well and avoid AD.

    While an augmentation is a major surgery, it has signficantly improved the life of many people with SCI, and I rarely seen a time where anyone regreted having it done. The mucous is usually a minor problem that requires irrigation once a day or so (during a cath), and most people no longer need to take their anticholergic meds (although this does vary).

    Ultimately though you must decide for yourself. The decision should be yours, not your urologist's, as you need to live with it. It is important to know the pros and cons of each choice and then to weigh the different options in relationship to your health and life-style. Don't be pressured into doing anything that you don't really want to do or are not committed to carryout out.

    (KLD)

  3. #3
    Senior Member
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    augmentation?

    I have had sp for 17years constant bladder infections and a bunch of urologist told me to get rid of it but others say keep it. The only people I know who got the bladder augmentation ended up near dead. 1 urologist tried to talk me into it i wouldnt do it. a year later a friend got the augmentation "he was doing self cath before" he spent about 6months in bed in & out of hospital before they finaly reversed the surgery.

    My question do doctors get paid extra for this experimental surgery?

    he told the doctor to give him a sp doc still refused?

    I dont think sp is good for anyone but is better than mixing up your bowel&bladder.

    if I where you, think I would get 4 or 5 more opinions

    Want to be involved in reasearch. like a guinee pig

  4. #4
    I think its disgraceful that anyone should try to bully you into changing your bladder regime, especially a doctor!
    But I do have some advice for you. You can test your bladder to see how much it can hold by doing a 'clamp and release' system. If you order some valves to go on the end of your catheter you can hang it over the edge of the tiolet and empty your bladder by opening it every 2-3 hours at first, then increase the time and see how you cope. At least this way you can see how your bladder copes and see if augmentation would be nessesary. If you decide its really not for you, you can just put a leg bag back on without worrying your sp site closing up.
    But I agree you should get the advice of other urologists before going for surgery or removing your sp cath.
    I have a sp cath and tryed the clamp and release system but it didn't work for me so I stayed with the sp.
    Hope this helps and good luck!

  5. #5

    Augmentation, etc.

    Bladder augmentation is far from experimental surgery, as it has been an accepted procedure in the USA for over 15 years.

    As with any surgery, you should only have it done by a surgeon who has had extensive experience. Never be anyone's first (or second or third) experience with any surgery if you can avoid it. We do several a year where I work, and have never had anyone in the hospital more than a couple weeks.

    Be very careful with any clamping of indwelling catheters. Not only can this cause you to reflux colonized urine back to your kidneys, potentially causing a serious UTI, but it can cause serious AD for anyone with an injury level above about T-7.

    (KLD)

  6. #6
    I have an SP tube as well and have had it for three years. My urologist recently suggested that I think about a ileovesicosomy(sp) down the road. He said this showed less risk of cancer and infections verses the S P, but it is major surgery. I think doctors try to outdo each other sometimes and just make suggestions. Most can't get over their own egos and think they know everything.

  7. #7

    Sometimes

    Have you every heard the expression "If you are a hammer, everything tends to look like a nail"?

    Keep in mind that urologists' primary training is as surgeons. For some, they tend to have been trained to think of surgical solutions first. Not all are like this, but it is worth exploring your urologists philosophy and biases in this area when choosing a urologist.

    (KLD)

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