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Thread: My urethra was stretched badly ruining my life

  1. #1

    My urethra was stretched badly ruining my life

    I can't believe this has happened to me but it has and I have not been able to get any help or any recourse.

    BEWARE - Lengthy story:


    I am a C 4/5 complete Quad 37 years post next month (October 19). I have had a Foley catheter all of that time with virtually no problems except needing to have bladder stones removed 3 different times over a 20 year time period. Each and every time they were easily removed and all was good. I never needed a urologist until 2006 and that was my first experience with bladder stones (by finding a female urologist in 2005/2006). She has been the only one to have two happy outpatient procedure done to remove bladder stones and she always did a great job.


    *** My urologist was also always amazed (after each and every time of going in my bladder to remove the stones) that my bladder and urethra were always in "pristine" condition after having a Foley catheter for over 3 decades. But I always had the best of care.


    Prior to January of this year I have always lived with a family member (grandparents, sister, spouse and then sister and brother-in-law) and I have always had easy foley catheter changes. My "comfort" of living in to an abrupt end after my beloved late husband passed away in June of 2012 (and who always kept me out of harm's way but I always had good home health agency nurses anyway). I then went to live with my sister and brother-in-law and was getting great care there by hiring morning and evening caregivers (who were all great) and having a great home health agency for catheter changes, any wound care needs, ordering supplies, etc.



    In August of 2015 my sister and brother-in-law's daughters (my two nieces in their 40s) began wanting to have "family meetings." I got nervous about this but apparently despite all the care I was getting my sister and brother-in-law wanted me to "move on" because they "wanted their house back to themselves" and they were getting older and my sister didn't want the responsibilities that she was helping me with beyond home healthcare (finances, doctor appointments a couple times a year, getting my medications and refilling medication container). After losing my husband I was in shock yet again for a second time in just a 3-year time period of having to move. This time I had nowhere to go and, having always been an active member of the community I lived in, I WAS NOT going to go into a nursing home but my sister and brother-in-law saw no problem putting me in one. Neither my two sisters, two nieces and a couple family members were willing to continue to ~share they care.~

    To make a long story short, on my own I found a great live-in caregiver and since I still have the Golden Retriever that my husband and I adopted in 2009 and whom I love with all my heart (and would die for her) I took that opportunity. My Golden daughter has been with me through my husband's death, through trying to find a place to live after my sister and brother-in-law wanting me to move on and I would die before being separated from her. She is almost 10 years old and that scares me to death in itself. I have always had dogs and can't imagine life without them.


    Like I said, I have always had a home healthcare agency nurse change my Foley catheter and have never had a problem. But the first nurse who came to change my catheter (after moving back to Tucson Arizona where my husband and I had been living for 11 years prior to his passing) blew up the balloon in my urethra stretching it very badly. At first I thought everything was okay and the nurse left but within less than 10 minutes after her leaving I knew something was terribly wrong. This is because I have been always able to tell when I can't urinate through my catheter and the AD begins to start.


    We called the nurse to come back and she wasn't happy about it and did not believe that the balloon could be sitting in my urethra (which it was). Before coming back she accused my caregiver of most probably seeing "flesh" down by my meatus because, according to her, there is a lot of "flesh" down there. Well, my caregiver has been in the caregiving field for 28 years (even though she has never had to watch a catheter change) and is not stupid and I myself do something was very wrong. My caregiver and knew a QUARTER SIZE round ball sitting right there in my urethra and it not being FLESH! Anyway, it took this nurse 45 minutes to get back to my house because she had already gotten on the interstate and she had been a very rude and arrogant nurse to begin with (unlike all my previous nurses) so I knew she would probably blame it on a urethral spasm and it wouldn't be her fault but mine. After she came back and changed the catheter correctly this time I thought all was well.


    I did not think this was going to be a long-term problem but it became one. For the first time in my life I began to have a leaking around my catheter. Although this is the first time in my life I have ever had a nurse or anyone stretch my urethra!

    My urologist and I decided to try increasing my current dosage of Oxybutynin to the highest dose for trying different anticholinergics (bladder spasm medications) to see if that would help but it didn't. I was also hoping that my urethra would eventually just repair itself but it didn't. My urologist finally performed a cystoscopy on July 6 whereby she confirmed that my urethra was indeed stretched.


    Now, since my urethra has been stretched so badly I can no longer irrigate or instill without it all drooling out my urethra. It just took ONE negligent nurse to cause all of this.

    Not only has this occurrence caused urine to leak around my catheter (causing other problems) but it took something else away from me. Prior to this happening I used to perform a daily irrigation as well as daily bladder "instilling" using sterile water/white vinegar solution to cut down on sediment that began to increase after acquiring a nasty bacteria that has decided to reside in my bladder and not go away (Proteus Mirabilis). It began around 2011 when my husband was still alive and I probably got it from having a bowel accident.


    I was not having a sediment problem prior to 2011 but when it began my husband suspected that Proteus Mirabilis may have come back. I say "come back" because it had been president in 2006 but my urologist was able to get rid of it back then using IV antibiotics and removing bladder stones. I also had a CT scan in late 2011 which confirmed bladder stones being present again. Then my husband passed away. My urologist removed 10 bladder stones in 2012 as well as putting me on IV antibiotics and suggesting a 10 day Gentamicin wash to try to get rid of that nasty clinging bacteria. I then moved across the country to live with my sister and brother-in-law. My urologist and not suggest a follow-up culture before leaving but after I got settled in my sister and brother-in-law's home sediment came back with a vengeance and, sure enough, the Proteus had come back and it has not gone away since and refuses to go away no matter what we try.


    To add insult to injury the urine that began leaking around my catheter finally got to my skin and began scalding my skin (my buttocks and surrounding areas) so I have been bedridden for the last 2 1/2 months. My urologist of 10 years has suggested that I now see another urologist at the University who has more experience with either a bladder neck closure or Botox injections or whatever to resolve my problem which has made my life a living hell.


    I have tried to see if there was any recourse that could be taken against this nurse and there is the possibility of that. But to add further insult to injury, I am now with a different agency and a week and a half ago when my catheter was changed my nurse did the same thing! Making the problem even worse (stretching the urethra by blowing up the balloon in the urethra). But at least this time the balloon was not left in my ear is for 45 minutes.

    I can't believe that, prior to February 1 this year, I was super healthy and had no problems when living with my husband or family and then when I get out on my own and had the first home health agency nurse (who says she has changed hundreds of catheters back when that happened in late January or early February) do this to me.


    I don't want to have major surgery done and I feel so alone now that my husband is gone and I am no longer living with the safety of any family and having the great nurses that I had before having to move out of the area to start living on my own.


    I have looked up all the options but I don't like any of them. Everything from bladder neck closure and switching to a Supra pubic catheter to bladder augmentation.


    I AM wondering if Botox might work for me or the "duette" catheter that I read about online several months ago and then just read about it here.


    I just want to get back to where I was WITHOUT A STRETCHED URETHRA but that isn't going to
    happen. :-( Further, the Proteus Mirabilis isn't going anywhere which creates a great deal of sentiment that often clogs my catheter. I was able to keep on top of that by "instilling" daily but now my stretched urethra won't allow that.


    Because this has taken up 8 months of my life and caused me to be bed ridden I have also lost my identity. I am also still somewhat grieving for my husband that I am a realist and know that life goes on. All I want is to get good care and always have a dog in my life.
    And not end up in a nursing home!


    After losing my husband and now not being able to live with any family member (and I only have a few family members left as my parents and grandparents have passed away) my Golden daughter is the reason I go on every day.

  2. #2
    Sorry this has happened to you. If increasing anticholinergics or switching to another type didn't help, it is doubtful that Botox will help.

    Have you tried larger sizes of catheters?

    You could try the Duette catheter and see if it helps. Poiesis will send you free samples. Contact them toll free at 877-487-5740 to request samples.

    If larger catheters or the Duette catheters don't work out, you need to get your quality of life back and reduce the risks of complications because of urine leakage. Switching to a supra pubic catheter is a simple procedure and it is reversible. Possibly, if you aren't wearing a urethral catheter, with time, your urethra may heal to normal size and you might be able to switch back to the urethra foley if you find your really don't like the supra pubic.

    All the best,
    GJ

  3. #3
    Hi GJ,

    I have not tried larger catheters because two urologists have not that this is a good idea because it will stretch the urethra even more. Although I think at one time I urologists here in Tucson about it and then decided against it. I just don't know what to do because I surely would not want to stretch it even further.

    My urologist DID say that even if I tried a suprapubic catheter... my urethra is just so stretched that I would continue to leak and that would continue to damage the skin. I am just now getting my skin back from being scalded no matter how hard we kept me dry and clean. Constant leakage just eventually got to my skin. It first caused a crack in my groin. After that healed up a big spot in my right buttock began and then everything spread like wildfire. We began to use everything from Desitin which began to heal the affected areas but then it began to get too dry and my skin started peeling and spreading that way. Vaseline finally came to the rescue.

    I just tried increasing another anticholinergic on the 13th and over the last two days the leaking has decreased dramatically. Will it continue? I don't know. First I was leaking when I was up in the chair. Then I began to leak worse when staying in bed [even with my legs close together to keep everything together or closed as much as possible if you know what I mean] and less in the chair. With everything being so chaotic and trying to deal with skin issues at the same time as all the leaking... it is hard to keep on top of everything [understatement!].

    Thank you so very much for the phone number to try free samples of the Duette catheters. My urologist did order the type of catheter that has 3 eyelets rather than just 2 for the sediment to get through easier and one was delivered to my home (from Bard) but it was made out of latex so I did not dare try it. Do you know if the company that has the Duette catheters requires doctors orders? I ask because my urologist is tired of "trying things" with me and just wants me to move on to the other urologist at the local university but that is not until November 3. In other words, asking her to do one more thing is like asking for money from her. She did not use to be like that but I never had this many problems before either. *Sigh*

    Thank you!

  4. #4
    Quote Originally Posted by Brinda41 View Post
    Hi GJ,

    Thank you so very much for the phone number to try free samples of the Duette catheters. Do you know if the company that has the Duette catheters requires doctors orders?
    When I ordered free samples, Poiesis sent them to me at my home without an order from my doctor. I just told the Poiesis representative what size I needed and they sent me 4 Duette catheters to try. A few days ago, I read (I think it was a post from CapnGimp) that Poiesis sent 3 samples of the Duette catheters to his doctor's office. All you can do is call them and see what story you get.

    All the best,
    GJ

  5. #5
    Hey GJ,

    The site went down last night and I tried until 11 PM to get it to work to get my message through to you but apparently the message did get through before the site going down and without me realizing it which is a good thing. I just came in now to repost it and that is when I saw my message did get through. I just want to thank you again and wish you and your family the best as well!

    ~Brinda

  6. #6
    Botox would relax the bladder.
    "Coaptite"(original) is possible to bulk up the urethra. They would do a cystoscopy and then do the Coaptite injection. You can google coaptite Also with indwelling- the female urethra shortens and if that occurred ( I know you said not mentioned-then you would need a sling.
    Yes this is done with some anesthesia- usually.
    CWO

  7. #7
    Dear SCI nurse,

    I have certainly never heard Coaptite so I'll bring that up with the urologist that I am supposed to see on November 3. Thank you very much!

  8. #8
    Super Moderator Sue Pendleton's Avatar
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    Thanks CWO! I'm not up on this and suggested collagen. Good luck, L!

    Sue
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  9. #9
    Quote Originally Posted by Brinda41 View Post
    Dear SCI nurse,

    I have certainly never heard Coaptite so I'll bring that up with the urologist that I am supposed to see on November 3. Thank you very much!
    I am imagine you urethra is not shrinking (healing) back to normal because you have a catheter in it all the time; I've read about that being a problem many times. Like ginji said maybe switching to a suprapubic catheter or even for a short time would give it time to heal, it's really easily managed and completely reversible!

    I've done an indwelling catheter, as well as ics /Condom catheter combo and also got bladder stones same thing happened to me when they get infected the bacteria sitsbut if you take antibiotics without removing the stone the bug just get stronger because it sticks to it. I switched to an indwelling catheter and I don't even have a drop that remains Stagnant in my bladder ( which is what usually causes bladder stone majority of the time?, haven't had a stone since infections are still a concern probably even more so then Icbut still a viable option. and you could always switch back after hopefully everything heals up and strengths, I think it's a good idea to switch it up to give everything a break as much as possible I imagine your urology system has taken quite a beating this last year or so.

    Sorry about everything else, I really relate with you; i'm sure you were trying to be reasonable and realize that it's probably good for them and you don't want to be a burden, but at the same time you can't help but feel A little bit of abandonment; but we don't want to show that! Good luck, and I hope your dog has another 10 years in him/her Golden retrievers are beautiful dogs, I used to have one a male name Rocky the name was very fitting built like an ox. Also I find that a lot of caregivers can be very miserable, stubborn individuals; but there are diamonds in the rough genuinely good people and then if I can say that that's saying something because I can be quite a prick sometimes Haha. Switching to a new area Russian roulette, I despise it feeling of vulnerability even helplessness. But it sounds like you found a good one!

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