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Thread: Opinions on Catheter and Rig tube.

  1. #1
    Forum Member
    Join Date
    Nov 2016
    Location
    Kildare in Ireland.
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    50

    Opinions on Catheter and Rig tube.

    Hi everyone

    I'm looking for opinions of people who have had catheters fitted and also have had a Rig feeding tube fitted. Basically last November I had a standard catheter fitted by one of the doctors at the local hospice. I found it awkward and uncomfortable at the start but I wanted to give it a good go due to the hassle of using a hoist every time I needed to pee. After a week or so it was somewhat settled down but still still awkward. But after ten days I had a problem in that I could feel my bladder filling up and not emptying. The public health nurse removed it and I peed immediately. The catheter had come partially out while I was in bed and wasn't emptying properly. I found myself a bit sore and tender for the next few days and there was blood in my urine for the next two days due to the catheter not working properly. So I've decided not to get a urinary catheter again and would like to look at the suprapubic catheters,These hadn't been mentioned to me by any of the medical team and I only found out about them by searching this forum.

    A possible issue however is my eating. I've had some issues with swallowing food in the last few months and although it's minor I had discussed the possibility of getting a rig feeding tube fitted this year. But with the problems with the urinary catheter I would like to look into the suprapubic catheter. I chatted to both the mnd nurse and the hospice nurse about the possibility of getting the catheter fitted and although neither one said it wouldn't be possible I seemed to get a vibe from them that it couldn't be done and that they seem to be against the idea. It should be noted that I communicate with them by email so it may be that I'm taking it up wrong. Anyways one of my carers was talking to the public health nurse a few days ago about a completely different person and she mentioned the fact that the other nurses didn't seem enthusiastic about the catheter. The public health nurse told her that this was because of the Rig tube I'm supposed to get fitted and they don't think having two tubes is a great idea.
    I hadn't considered this and neither nurse had said it couldn't be done. I have an appointment with the neurologist at the end of the month and I will discuss the possibility of having both tubes fitted. I also have an appointment with a urologist to discuss the catheter been fitted. This appointment was arranged by the nurses.

    So I'm wondering about peoples experiences. Has anyone got both tubes done and does it present them with any issues. Are the tubes in different places so that there is no possibility of confusion about which is which. Any other questions I should have for the two different doctors. Thanks for reading.

    Mick.

  2. #2
    Forum Member
    Join Date
    Jan 2018
    Posts
    56
    had Rig fitted but ended up with pulmonary embolisms then months later it fell out. tried to get it put back in but was too sore so didn't get it replaced. on waiting list for suprapubic but have decided I'm not going to go ahead with it on the basis of trying to recover from it.

  3. #3
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
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    2,914
    There's no barrier to having both tubes Mick - they are quite far apart really: suprapubic catheter goes into the bladder, below the belly button and the feeding tube goes into the upper part of the stomach. (I've known someone who'd both and a colostomy too)

    It's not possible to put feed into the bladder by mistake as the syringes and feeding sets have unique connections and the catheter tube is often in your pants.

    If you are getting both, it's best to space out the procedures and let one heal fully before getting the other.

    Make sure you get lots of info from the Urologist - the suprapubic catheter needs more looking after than a urethral one and you need to know what it entails, and which type - valve or bag? I wonder if your urethral catheter was the right size? They may suggest trying one again...

    If your feeding tube is fitted as a RIG Procedure, it's usually a balloon-retained tube which can be easily changed to a small button once the tract is established. I have one.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

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