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Thread: Anyone else have SP catheter removed permanently, is so how long was leaking ?

  1. #1

    Anyone else have SP catheter removed permanently, is so how long was leaking ?

    I had my suprapubic Catheter removed about five weeks ago due to a constant staph infection in the stoma hole outside the catheter. No matter what I did the infection would not go away in the stoma for well over a year. I was using a valve the whole time on the SP cath, so I still had full volume of my bladder. Ever since I had it removed its been an up and down roller coaster ride. I will start to leak less out the stoma hole as if its closing, and then it just all goes crazy and starts leaking super bad again.

    I take vesicare to help with the spasms and that seems to help a bit, I've been taking a ton of vitamins and probiotics since I'm still on ab's from the stoma infection, which actually cleared right up after 2 weeks of IV cubisin, they removed the suprapubic catheter one week into IV treatments and I have now been leaking going from light leaking to heavy leaking, and back and forth for approximately 5 weeks now. I feel like I'm going crazy. One day I will be able to empty between 400 to 600 cc of urine by straight cathing, then the next day I will leak when I get to just over 100 cc. I cannot for the life of me figure out why the stoma won't close, and my urologist says next step will be going into the hospital and having surgery to close it.

    At first I had a foley in for the first 3 1/2 wks to divert the urine away from the hole, but since it was constant leaking, the thought was maybe the balloon from the foley was keeping the hole open, so it was removed. It seems like it starts to close and then keeps opening back up. For the life of me I can't figure out why this is going so wrong. I am cathing between every one to two hours.

    Anyone else here ever have this happen? oh and I had a French 22 cath when the suprapubic was in. My doctor said it would probably take a week or two to heal shut, since I had a large catheter, but now it's just gotten to the point of frustration for me. Any help or thoughts on this would be greatly appreciated, thank you so much in advance xoxo
    BobbieLee
    SCI from L5 to S2-S3, complete Cauda Equina Syndrome , symptoms from waist to feet, as well and as far up to the stomach. Spinal cord surgery for removal of tumor Jan 2009

  2. #2
    I am wondering if because I have no nerve connections and no function or sensation to my bladder, that its stopping my bladder from healing properly ?
    BobbieLee
    SCI from L5 to S2-S3, complete Cauda Equina Syndrome , symptoms from waist to feet, as well and as far up to the stomach. Spinal cord surgery for removal of tumor Jan 2009

  3. #3
    Many years ago I had a supra pubic removed, the old fashioned way. I went into surgery, was cut open, had the bladder stitched up and then had the incision stitched. A day later, the incision started leaking and we did it all over again. I don't think nerve damage has anything to do with the healing process.

    Good luck and I hope you get your problem resolved soon.

    Millard
    ''Life's tough... it's even tougher if you're stupid!'' -- John Wayne


  4. #4
    Millard, that is exactly what my uro wants to do. He had me drop off a urine sample to my infectious disease doc yesterday to make sure I don't still have the infection, and if all is clear on the cs, he wants to schedule surgery.
    BobbieLee
    SCI from L5 to S2-S3, complete Cauda Equina Syndrome , symptoms from waist to feet, as well and as far up to the stomach. Spinal cord surgery for removal of tumor Jan 2009

  5. #5
    Well my bladder is still leaking after having the suprapubic catheter removed, I think it's been at least six weeks now. I cannot for the life of me figure out why the hole has not healed up in my bladder. I have tried e erything I can think of, to no avail. Last Monday I got the foley cath back in to divert the urine away from the hole again, even though it did not work for the first 3 weeks, but thought I'd give it another try, and it's just not working. The good news is my CS came back negative so no infection, which is what my urologist wanted to make sure of before considering surgery to close up my bladder, so I'm all clear as far as that goes.

    I think after six weeks of leaking out my abdomen, I'm going to go ahead and schedule surgery, which might actually be better anyways, since not only will he stitch my bladder closed, he said he will open me up on either side of the stoma, and stitch the hole all the way closed as well. I guess in the long run that will be better, because then I will not have to wait for up to a year for the hole to fully close as well. I will just get it all done all at once. Who would have thought it would be so hard to go back to straight cathing :-) I'm just glad I used a valve on my catheter for the Last 3 1/2 years so I have full bladder capacity .

    I ended up getting the foley back in beginning of the week, because I had such a lack of sleep from doing the straight cathing soooooo much, I felt like I was going to go crazy fom sleep deprivation. Had I known my bladder would not heal quickly like I had researched and from what my dr had told me, I would have just done this surgery o begin with. I would have been all healed up by now had I just gone that route.

    He said it would take a week to two weeks to schedule my surgery and get me in. The great thing, is I won't have to be in te hospital as I can have it done on an out patient basis at the hospitals day surgery unit. Will update once I know more. Xoxo
    Last edited by Sunnydayz; 04-26-2013 at 11:29 PM. Reason: Fixed typo
    BobbieLee
    SCI from L5 to S2-S3, complete Cauda Equina Syndrome , symptoms from waist to feet, as well and as far up to the stomach. Spinal cord surgery for removal of tumor Jan 2009

  6. #6
    Removed the foley again today after having it in for another week, and the supra pubic hole is leaking just as bad if not worse. I am wondering if having the staph infection for over a year has damaged the edge tissue of the hole in my bladder to where it just can't heal back together. I'm thinking my uro surgeon might need to remove the tissue on the edge of the hole and get fresh tissue that was not directly in direct contact with the staph for so long, then sew that up, to get it healed. I'm calling first thing in the morning and begging to get in as soon as possible for the surgery to close it. The one thing I am excited about, is he's also gonna stitch the whole stoma shut too so it will be completely healed after surgery and I recover, that part I am totally looking forward to so I can finally leave my house, and finally see my daughter and grand babies who I miss more than anything in the world right now :-) I have been in pjs for over a month and in my house the whole time. I have an amazing view of the beach from my patio, and have not even seen it. I just really miss my life, wearing clothes, and getting fresh air.

    It's amazing how many small things we take for granted in life, that we miss so dearly once we cannot enjoy them anymore. Wish me luck that I get my surgery scheduled quickly, before I go completely crazy xoxo and thanks for listening to me rant, I know I drive my husband crazy almost every night when I go on rants in the middle of the night :-)
    Last edited by Sunnydayz; 04-29-2013 at 01:51 AM.
    BobbieLee
    SCI from L5 to S2-S3, complete Cauda Equina Syndrome , symptoms from waist to feet, as well and as far up to the stomach. Spinal cord surgery for removal of tumor Jan 2009

  7. #7
    So I'm scheduled for surgery monday at 1pm , my urologist thinks from having the staph infection in the stoma for well over a year, it has damaged the tissue around the hole in the bladder as well as the stoma. He will need to remove the damaged tissue in my bladder and the stoma , then stitch everything closed and hope it finally heals shut so I can finally go back to straight cathing.
    BobbieLee
    SCI from L5 to S2-S3, complete Cauda Equina Syndrome , symptoms from waist to feet, as well and as far up to the stomach. Spinal cord surgery for removal of tumor Jan 2009

  8. #8
    Getting very nervous today as my surgery is tomorrow. I'm supposed to be doing it as out patient but I am a little freaked out by this and I think I will ask to stay in the hospital at least over night. I was the one that begged to do it out patient but now that its so close, I am reconsidering going home right away, since he is going to open my abdomen completely and remove all the tissue from the outside edges of the bladder hole as well as the stoma. My doctor even told me he has never had a patient whose bladder would not heal shut on its own, so it's a first for him too. I think it is from having the staph infection for so long, as well as having the supra pubic catheter for 3 1/2 years. Thankfully I used a valve the whole time so my bladder never shrunk and I can go back to IC. I am worried though now because I've been using a bag for close to a month with the foley while trying to let the bladder heal shut, but it just did not happen and it's been seven weeks since the tube was removed. Wish me luck that this surgery finally closes it up so I can get back to IC and do the veteracin instillations to avoid infection.

    The only good news through out this is, I had done 4 of the instillations suring this last seven weeks and I have since had 2 cultures done that have come back completely clean with no bacteria. My uro even suggested that I do an instillation before surgery, before checking into the hospital, so he is a believer in the process, as this was the first time in well over a year that I had good cultures. Will update when I can after surgery.
    BobbieLee
    SCI from L5 to S2-S3, complete Cauda Equina Syndrome , symptoms from waist to feet, as well and as far up to the stomach. Spinal cord surgery for removal of tumor Jan 2009

  9. #9
    Quote Originally Posted by Sunnydayz View Post
    Getting very nervous today as my surgery is tomorrow. I'm supposed to be doing it as out patient but I am a little freaked out by this and I think I will ask to stay in the hospital at least over night. I was the one that begged to do it out patient but now that its so close, I am reconsidering going home right away, since he is going to open my abdomen completely and remove all the tissue from the outside edges of the bladder hole as well as the stoma. My doctor even told me he has never had a patient whose bladder would not heal shut on its own, so it's a first for him too. I think it is from having the staph infection for so long, as well as having the supra pubic catheter for 3 1/2 years. Thankfully I used a valve the whole time so my bladder never shrunk and I can go back to IC. I am worried though now because I've been using a bag for close to a month with the foley while trying to let the bladder heal shut, but it just did not happen and it's been seven weeks since the tube was removed. Wish me luck that this surgery finally closes it up so I can get back to IC and do the veteracin instillations to avoid infection.

    The only good news through out this is, I had done 4 of the instillations suring this last seven weeks and I have since had 2 cultures done that have come back completely clean with no bacteria. My uro even suggested that I do an instillation before surgery, before checking into the hospital, so he is a believer in the process, as this was the first time in well over a year that I had good cultures. Will update when I can after surgery.
    While this has been a vexing problem for you, it has been very interesting reading your posts and following the process. Great to hear you are going to have the surgery tomorrow. Good luck! Let us hear how the surgery went and the progress you are making.

    All the best,
    GJ

    PS: Sending you a PM

  10. #10
    Good luck Sunnydayz. Wishing you have a fast recovery too.

    Bob.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

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