Super Supra Pubic Catheters

1,776 thoughts on “Super Supra Pubic Catheters”

1. Hi all, I have had my spc for nearly three years ago now. When my spc is changed the pain is so intense and last for a gpod while afterwards. I suffer with alot of UTI’s, like literally every other week. Sometimes oral antibiotics clear the infections up but more recently I end up in hospital with IV antibiotics. Quite a few times my catheter has been stuck resulting in having to go tp theatre to have it removed and have the whole stoma made bigger.

   I was wondering if anyone knows why it is so painful to have my spc changed. But so painful to the point I want them to put me under a general to have it changed (which they will not do). Ive had gas and air whiles they have tried to change it and again its so painful that doesn’t help. I have a change coming up am I dreading it so much im actually think I just might not tirn up tp the appointment.

   Any ideas to try and help me understand why its so painful are much appreciated.

   Lotty x

2. For catheter valves perform a Google search key word “catheter valves” ensure you click
   images view. This will produce a large selection of valves. I believe you will discover the flipflow
   is not the best one out there.

   Hope this helps

   Greg

3. Hi Greg & Everyone,
   I’ve only been on this site a few weeks but it seems so many of us have similar problems. It is also apparent that our Urologists have varying degrees of listening capabilities & knowledge of what is available for us & even how to solve our problems. Is there no way that all these problems can be solved as a “whole”? Could we pool them together & see just what is the most important & get something done about them by one body so to speak? I know we have this wonderful website we all contribute to, but perhaps it can all be put together.

   To Trampergirl,
   I’m on Pro-Banthine 15mg (2) x 4 times a day. I started off at 15 mg twice a day but had to build up over a week to the maximum dose because I was in so much pain. Have to say it’s been remarkable. I now only have spasm if I let the dose go too long & then it takes several hours before things settle again. The major side effect for me is a very dry mouth. That happens rapidly once I take the dose.
   But anything beats the pain! There is blurred vision, increased ocular pressure, & headache. I have visionary problems & headaches anyway so I put up with that for the sake of not having the spasms.

   Regarding Flip-Flow Valves – people with a Neurogenic Bladder from e.g., a Cauda Equina injury, can’t use them. They have to have free drainage.

   To Greg,
   Can you tell me about damage to the bladder wall & the Duette catheter. I’ve been on the Poesis website & watched their video. The catheter seems to work better with the two balloons, but is there much reduction in damage to the wall? Also, my Continence Nurse said she wondered about the increase in surface area with the added balloon. Is there an increase in adherence by the bladder wall, to the balloons, with the extra balloon? She said my problem with difficulty in her removing my catheter is the adherence to the catheter tip & balloon. My tissues grow onto the catheter pretty quickly. My body is rejecting the catheter & this causes the painful removal.
   Can you tell me if there is discomfort with having the extra balloon? Some people don’t tolerate more than a 10ml balloon. Myself being one of those. Of course at the present time that’s a mute point as we can’t get the Duette in Australia, but I would like to know anyway.
   Are we any closer to getting approval?
   Thanks everyone for your input.
   Travel well,
   Maria.

4. Hi Lotty,
   I also had my SPC for almost three years and I used to endure a lot of pain too when my catheter was changed (every 6 weeks, but may be not as severe as you describe it. But I am taking painkillers now. One 30 mg codeine with two paracetamol one hour before the catheter change. Prophylactically I have been prescribed a low dose of an antibiotic (50 mg nitrofurantoin) once daily, right from the beginning. The painkillers work fantastic, no pain at all and no more UTIs since I got my SPC.

5. Hi Tom, thank you for your reply. I dont think anyone understand what im saying when i tell them its painful. If going under a general was an option id choose it everytime. Im on morphine based painkillers but will definitely try your remerdy. Id honetly do anything not to feel the pain. The district nurses no longer change my spc as it is well and truely stuck and because it causes me so much pain. The urologist does it for me in theatre but i dont have a local or a general. I just think its because its where she works. It has to be pulled three to four times with quite abit of force before it comes out. Putting the new one in isnt a problem its the old one coming out that causes the problem. Im due to have it changed very soon and im seriously thinking of not gping to have it done.

6. Hi I am a 29 year old female quadriplegic whos had a spt for 12 years, i dont know if its the site or the tube but right now i am really hurting down there and pain medicine is not helping very much, any ideas why?

   please and thank you

7. Hi Marcy,
   Pain is a sign & the bodies way of telling us that there may be an issue. It could mean a number of things.I suggest you contact your doctor or continence person to have it checked. Until some investigation is done you won’t know what it is. It may be something simple that can be easily dealt with. Take care. Regards Maria.

8. Merry Christmas and a Happy, Healthy New Year to all my suprapubic catheter comrades. May all your changes be routine and uneventful, your spasms be few and your UTI’s nonexistent.

   Gdo bless you all.

9. Hello, I just have a small question myself. I’m a 22 year old woman and currently only have the normal catheter placed in. I am going to be seeing a doctor about get the super supra one. I was wondering though and I hope this isn’t a terrible question to ask ( cause it happens to me now with the one placed in through the urethra. ) does it leak down there, is that common? I am getting one because it never seems to stop for me. It’s making things hard and I always have a rash. I was just wondering if you could give me an answer.

10. To Andrea: I had to get the SPT because getting straight cathed every 4 hours was killing me, I would be screaming crying. I only had a normal catheter in while I was in the hospital. So all I can tell you is that if my SPT is kinked or clogged I will pee normally from down there, other then that I am good. Hope this helps!

11. Andrea:
    There are a number of reasons for leaking, of which, may include urethral erosion or trauma to the bladder sphincter caused by the catheter. Sometimes leaking is reduced or eliminated by avoiding urethral catheterization, by medication, or sometimes it is necessary to surgically close the urethra after the SPT is placed. Make sure to discuss the concern with your urologist first. Also understand that there are a number of procedures for placing a SPT with different complications, limitations and benefits. The techniques include: percutaneous punch kits (outside puncture to the bladder), Lowsely tractor (a grasper inside the bladder pulls in a catheter attached through an incision made down to the instrument), an Open procedure (an incision made from the skin down to the bladder), and the newest technology, T-SPeC (places the SPT from inside the bladder making a small incision from the bladder to the skin. Some physicians perform the T-SPeC procedure in a clinic setting with local anesthesia, whereas, all the other procedures are performed in the OR under general anesthesia). Do your homework and understand the differences of each. You can review the most recent published clinical study on T-SPeC here: http://link.springer.com/article/10.1007/s11255-014-0884-x . Also, the MS Society has recently formed a special committee on bladder dysfunction to establish guidelines on earlier conversion of urethra catheterization to SPT for limiting the possible injury to the urethra and sphincter which cause leaking, as well as reducing of the rate of UTIs. Additionally, the committee will evaluate all the techniques for placement of SPTs and produce a guide to all the options available. Note, not all urologists are trained or utilize all techniques of SPT placement.

12. Hello, It’s been a while since I’ve been on but I have encountered a problem.I have a supra pubic cath for 3* years with the normal issues. We change it every 5 weeks but this time my nurse was unable to pull it out of my bladder. we tryed the tricks the doctor suggested with no luck.Iended up in his office and he injected a syringe of numbing creme which was very painful and pulled it out which hurt even more. Put a new cath in and my bladder is back to being happy. The doctor says don’t worry it happens but my question is is this gonna happen again and with frequency or was it a 1 and done type event? Any feedback would be great. Happy New Year…
    Lynn

13. LYNN —
    Hi Lynn, I have had a SPC the same amount of time you have and have not long ago ended up with the exact same problem. In the end I had to be taken to theatre under a general for them to get it out and was told it took two of them to remove the catheter. In the end they had to make my stoma bigger and use a bigger catheter in order to sort the problem out. They said the catheters were crystalising and sticking to my bladder wall. I now have my catheter changed by the urologist rather than the district nurses with pain but I have always suffered the pain when I’ve had my catheter changed(just not as bad a s now). Don’t for your sake let them pull on it if it wont come, I have been there done that and the pain is off the scale.

    Please don’t let them pull it if the pain is to bad to tolerate. I don’t mean to scare you if I have just your story is very very similar to mine.

    Hope you don’t have any more difficult changes.

    Wishing you a healthy & happy 2015

    Lotty

14. l am going to try the Duette double ballooned catheters. Fortunately l have a friend who was staying in Florida with her son. l contacted her and she was able to get me some samples. As yet, it is not available in UK. And l was desperate to try them – as l have had a lot of pain with the old type caths. l have had a SPC for 20yrs – so not surprising that l am now having problems. My bladder must be like a wrinkly old deflated balloon.

    Did ask my GP [UK] to refer me for Sacral Neuro-modulation – but its now a year and still not had an appointment – so might go privately. This implant is supposed to control bladder and bowels. And with my MS – l am doubly incontinent. lsn’t life great!!

    Most of the problems with a SPC – that l have read on this amazing site – are because the nurses/doctors do not know enough about the management of a SPC. I have a wonderful nurse who works for a incontinence agency – she only does catheters changes. And also trains the local district nurses.
    They turn to her when they have difficulties.
    Read the information on SPC management on this site – its very good – and straightforward – no nonsense.
    l wish you all a problem free 2015.

15. Here is something of a very different note. Whenever I open this site I get posts which are five or six years old and it takes a heck of a long time to get to the present.
    Its for that reason that I often don’t read the new messages.
    Has any one got a solution ?

16. I have the same problem as Tom’s comment rec’d today – not being able to find the latest comments, questions, and stories.
    Is there a quick way to get to the newest first please?

17. Trampergirl,

    Please send me an email when you have time. I work for the manufacture of the Duette™.

    Sincerely,

    Greg

18. TOM,
    l find the same problem – and yes it has often stopped me from reading the posts. lt takes a while to keep tapping the ‘newer comments’ on the top right – until l get to 2014. There must be a way of getting straight to the latest posts without all that rigmarole.

19. Lynn and others:
    I am one of the developers of the new SPT placement device called T-SPeC. I found it interesting and quite curious that the catheters are not changed more frequently. By FDA regulations a SP catheter should not be left indwelling for more than 29 days. I would be interested to know the average exchange schedule that is been prescribed by doctors? Also, it should be known that there are few catheters that are not “officially” cleared for SP use, including the Foley catheter. The T-SPeC catheter is cleared by the FDA specifically for suprapubic drainage. However, the T-SPeC cath is not distributed at this time outside of the initial placement kit as an exchange cath.

    There are specific guidance and testing required by the FDA for suprapubic caths.

    Tim

20. Greg:
    Please contact me at t.braun@swanvalleymedical.com. I would like to get more information on Duette as a possible exchange cath, post procedure as we do not produce or distribute consumer use catheters.

    Tim

21. Tim–
    My catheter is now being changed every three months. I have infections every other month. The pain it causes me to have it changed is off the scale. I plead with then not to pull on it anymore but they do. I would rather go under a general to have it changed. Im now getting to a point where im actually scared to let them do it and have cancelled my last appointment just before christmas because of fright & because I had a bad throat infection.

    I pray someone somewhere could invent a catheter that would cause me no pain.

    Any advice from anyone would be gratefully recieved.

22. Lotty.
    l have my cath changed every 5weeks – sometimes sooner. Any longer- then yes it becomes quite an ordeal to remove – causes trauma which soon develops into a uti.

    l could change my own – l have had it 20yrs. So l do know exactly what to do. Reading the posts from people on this site – l think the main cause of their problems lies with the nurses who are supposed to be looking after them. Changing the SP catheter should NOT be painful. Be more in charge -insist on frequent changes. Make sure the nurse withdraws the same amount of fluid as she put in. Usually, 10ml. l find the glycerine/water better. Make sure they take their time to get all the fluid out. There is no need to rush this part of the change. Drink plenty of water before and while its being changed. lt fills out the bladder so that it is not so deflated and reduces the risk of the cath tip being sucked into the bladder wall.
    Now slowly turn the cath around a few times to make sure it is free before withdrawing. A little bit of Instillagel to numb the site helps – [and more inserted before putting the new cath in.] lf the cath has been left in too long it starts to get gummed up on the tip -crystalls form.
    lf you see this on the old cath – then that is a sign that you need it changed more frequently.
    Another thing – do see how far the old cath was in – do not let the nurse push the new one in too far. lf slowly inserted – as soon as urine starts to flow into the bag that is when to stop. Do make sure that it is flowing before they inflate the balloon.

    Greg.
    lts from your posts that l learnt about the Duette catheters. l mentioned it on the MS Society website UK – and lots of folk are very interested. They have looked at the youtube vid – and seen for themselves the cause of their discomfort and pain. Our NHS in UK – is wonderful – but so slow to change.
    How can l email you – can l get in touch through the manufacturer. They do have my email address as l have been in touch with them via their web page.
    F Ward.

23. Hi everyone,

    my name is Jane and I’m 41 with a SPC as a result of 5 spinal surgeries.
    Each one leaving me with another complication, rather than any salution.
    Although I have only had my SPC for a little over 8mths, I do seem to be experiencing some of the problems you guys are,but, as a result of long term SPC. It is mainly the pain which as a few of you have mentioned, can be, so servier, that it makes me afraid when it is due to be changed again, and which hasn’t been that often. The problem I have is, because of my back problems, I am already on a very high dose of pain medication. I take 150 of MST (morphine) twice a day 300 pregablin twice a day 10 oxibuten twice a day Duloxatine once a day and paraceptamol and oramorph as and when needed. So even when I have a flair up of back pain, I can’t take anything, but, as for pain relief for the cathater pain nobody has even suggested anything, so, I have just presumed I couldn’t take anymore.
    I am going for urodynamics on Monday, and, I will be asking what exactley my options are.
    I am also very concerned now with what Tim has just informed us of, “29 days” I only have mine changed every 8wks and last week it got stuck, and had been in close to 10wks, because I had an infection, and after 10mins or more of the nurse trying ended up in A&E to have it forcfully removed which I’m only just getting over because of the pain. But was told by the nurse at the hospital it needed to be out as soon as the infection as found, but, my district nurses had said they wouldn’t change until it was clear !!
    I’m so so confused, there is so much conflicting information out there, and nobody has actually explained much to me. I’m really down about it all because this “life changing” stuff that is happening, is already really difficult to deal with without the conflicting information.
    Sorry for rambling on so much, I’m so happy to have found this site, and all by googling “what I should expect to happen at urodynamics ?”
    Which I’m having done on Monday but, when I first had it done, I had a urethra catheta in.
    I was told very early on that there was a device that was available to me(the implant) and yet when I saw a different urologist, (I’ve seen 4 up to now) he said he didn’t know what I was talking about, and looked at me strange, yet it has been discussed on here. So when I go back for my results on 22nd January, I will be asking a hell of a lot more questions but, this time research it before hand.

    Anyway sorry again, And thanks to you all, for putting your information out there. It makes you think that we probably wouldn’t know half as much as we do if these site weren’t available to us.
    Happy new year, hope it is as painless as it can possible be.

    Thank you for taking the time to read my post, I look forwaerd to hearing your views.

24. Lotty, feelin for you, I’ve had severe pain issues with supra cath removal. Some suggestions. When the gel is applied before removal, push/slide cath in n out a bit so the gel gets right down the stoma. With some catheters when the water is syringed too hard out of the balloon, the balloon is then a wide flat object and quite sharp, it feels like it is cutting into wall of canal on removal. Sometimes a crystal-type material forms on the tip of the catheter, this makes it painful to remove. I now regularly eat cherries and the crystals no longer form. I also take a Valium, baclofen and ditropan 1 hour before change to relax stomach spasm. Good luck. Sailor

25. Thank-you for pointing out the email link problem guys. I should be able to code a solution within a week or two. Meanwhile you may like to bookmark this anchor link or click “View Comment” in the email. It will bring you to the bottom of this page where you can click a recent comment link or scroll up a little.

    http://www.streetsie.com/supra-pubic-catheters/#footer

26. Jane and The Sailor,

    I would also agree this site is perhaps the most “Real World” and meaningful that I have come across. I quickly wanted to comment on The Sailor’s comments. We can find out later if The Sailor is a sailboater :)…

    I wanted to mention that he is correct regarding the balloon/syringe statement. In particular what happens many times is that individuals removing the water from a catheter balloon “pull back” on the syringe thus creating a vacuum in the balloon. This lends itself to what is known in the industry as cuffs/ridging of the balloons. Catheter balloons should be allowed to deflate by their on pressure release, ie “place syringe in catheter valve and allow the pressure in the balloon to push back the syringe plunger”. Note often times the prescribed amount of CCs put in will be more than amount that comes out (10ccs in may indeed become 8ccs when removing, don’t be alarmed). One can perform small aspirations with syringe plunger but upon removal of catheter a vacuum should not be pulled on the balloon.

    Another suggestions when removing a SPT catheter is slightly twisting catheter shaft during removal of catheter NOT balloon. I have also heard that some individuals will place (pre catheter removal) a small amount of topical anesthetic (there are many…. EMLA 5% Cream (lidocaine 2.5 percent, prilocaine 2.5 percent), Vision-Gel (benzocaine 20 percent), Xylocaine 10% aerosol (lidocaine 10 percent).

    As always discuss any medical related items with your Doctor or care provider.

    Sincerely,

    Greg

27. Graham – What a difference to be able to get straight to the newest comment.
    Thankyou for that.

    Jane – l think the ‘implant’ you mentioned is the Sacral Neuro Modulator – google it. lt is an implant that controls the bladder/bowel. Two people on the MS Society website had it done. l am still waiting for my GP/Referral to come through.

28. Hello all …new to this site my husband recently had a penal cath removed after one year and now has a supera pubic catheter in place. First cath change in urologist office this week since surgery for original placement. I have been doing all prior cath care for my husband since last January with no concerns. It was brought to my attention that i might want to learn how to do supera pubic cath changes for my husband. My concern is not that i am incapable of doing this procedure at home but my husband is a very meticulous and organized close to OCD tendecies. This procedure goes beyond empyting a urine bag and measuring output and applying a dressing over newly inserted spc. I feel haveing this continued spc done in urologists office every 6 wks or is in my husbands best interest. Anyone else with similar? Not sure if this is an insurance coverage issue for ongoing urology visits of this nature. My husband has no other disabilitiy handicap.

29. Chicken Little (Dennis) here.
    First of all I am very thankful I found this forum.
    Second, I apologize for my clumsiness of the terminology.
    Tomorrow I am having a cystogram and radiogram(sp) xray to determine the location and severity of my stricture in my urinary tract. Sounds like from the Urologist I am heading for a Urethropolasty(sp?). She also said that at the time of the diagnostics she will go ahead and insert a suprapubic (sp?).

    I concerns are, is it painful after the procedure? I wear my belt low, since I have a pretty good belly overhang, how will that work? Just a tad freaked out. Any advice would be appreciated.
    Thanks
    Dennis

30. Dennis – For the suprapubic (SP) procedure, depending on the method of placement, severity of stricture and size of the panis (belly fold), the procedure could be done in four ways, an Open Cystostomy – incision from outside down to the bladder to place the suprapubic tube (catheter). The “Open” has longer recovery and discomfort, due to the larger incision. Or a punch device (percutaneous trocar punch) where by a trocar blade, tube or needle is pushed into the bladder. This technique has the highest rate of complications associated with the procedure vs. all others. The recommended guidelines by BAUS (British Association of Urological Surgeons) for use of this technique (because of it’s inherent complications) is to require use of image guidance by ultrasound or fluoroscopy (x-ray) and requires your urologist to be proficient in use of that technology – note: if the bowel is empty, ultrasound may not “see” a bowel loop. Both of these methods are performed when there is no access to the urethra. Two other options to place the SP tube are the Lowsely and T-SPeC and can be performed with some stricture disease (if a cystoscope can be passed through the urethra- so can the sound (tube body) of the Lowsely and T-SPeC. Both use the inside to outside approach. These techniques limit the potential of puncturing the peritoneum cavity (where the small intestine and other internal organ reside) and avoid injury to the rectum. These techniques limit the possibility of accidental puncture of bowel or other organs with the blind downward punch with “perc kits”. Lowsely has a body mass limitation where by the tip of the device must be palpated (felt) on the abdomen from inside the bladder and an incision is cut down to the tip to then connect the catheter to pull it into the bladder. If you have a large BMI (obese) and/or a large panis, this may be difficult for use of the Lowsely. Finally, the T-SPeC has the ability to accurately place the catheter by starting the small incision in the dome of the bladder (the optimal location) to the skin with a guidance system. Whereby, placing the catheter is precise for correct position for optimum comfort (which may be placed above your belt line.) All the options are performed routinely in the O.R. under general anesthesia, however, the advances with T-SPeC have allowed trained urologists to place SP tubes with minimal sedation or without anesthesia, even in a clinic setting, outside of the OR. As for pain, everyone is unique. But reason would suggest that less is more, the smaller the incision, the less recovery and potential for less discomfort.

    Do your homework, know your options. You and your family are the best advocates for what is right for you. As a developer of the T-SPeC, I have seen all techniques and understand the limitations of each. I also train physicians on the T-SPeC technique and support cases in the OR with those trained urologists. I have an enormous array of clinic support and documentation on each option. You can search this database for more information: http://www.tspec.info/references/clinical-papers

    Tim

31. Mabeline,
    I had an SPC put in 3 1/2 years ago and went to the urologists for the first several changes. Then I had 2 occasions when the balloon deflated unexpectedly after about 3 weeks and the emergency hustle to the doctor’s office ( I once sat in the local ER for several hours and they finally sent me to my urologist because they didn’t know what to do with it). That’s when I figured out I needed to have more options for this. My wife sat in on that change. We have been doing them together since then with no real complications every 3 weeks. I understand that this is not the case for some of my SPC friends, but this has really worked well for us.

    Dennis,
    Having spent 2 years with urinary stricture issues prior to my SPC, I found the SPC a welcome change to the stricture/leakage alternatives. It will take a little healing time from the surgery, but everything does. AS for the low belt thing, you mat want to look into suspenders, because that is pretty much where the stoma will be. After healing up, you also may fing the Belly Bag useful for resuming normal activities.

32. Mabeline, Yes, do watch how to do the cath change. And read the info on this forum as it is very instructive. l have had my SPC 20yrs -so do ‘watch over’ the district nurses who come every 5weeks to change mine. l have had to replace the catheter before now as it did come out. The nurse had failed to inflate the balloon. l got the syringe out of another catheter pack and did it myself.
    To begin with – it is daunting. But over time you will soon become at ease with it all.
    Dennis, l use a short length catheter and a 600ml bag with a direct contact valve – so almost no tubing. The bag l tie around my middle with a lace/cord. This way it fits snug against me – is easy to empty. No tubing to get kinked. And no heavy bag of urine strapped to my leg. l can wear tight jeans/shorts/leggings. This is the most comfortable and incident- free way l know of wearing a SPC.

33. My husband has this sub-cath now because he had so much problems with the other type. Come to find out his bladder is badly damaged. He has had the new one about 2 months. He only has the bad spasms when it gets changed. Well it was changed last week and had the spasms a couple of days and then it stopped. Now he has urine coming from both the catheter and his penis. It now has a strong order. Every time he drinks water it starts burning and starts coming out of the wrong place. I have a call placed with his nurse and she can’t come until she gets out of a meeting in a couple of hours. I’m guessing it needs to be flushed as someone else said this in an earlier post. I used to flush it when it was thru the urethea but never this way and I’m scared I will mess it up. He is also on the oxybutin 3 times a day and I have been giving him pyrthium but we only get about 20 of those a month for some reason. Any suggestions?
    Thanks.

34. Bill and Trampergirl,
    Thank you so much for the helpful and comforting information. The Doctor’s plan of action is to soon insert a SPC then wait two weeks and then do a urethroplasty. Currently have a cath through the penis.

    Thanks again for your help. I am sure I will be back soon.

    Dennis

35. I do thank all the above comments and will take all into consideration. My husband has a plug inplace and does not use a leg bag or bedside bag at night. I am thankful because this really gives him more freedom of time and mobility. if i may ask has anyone out there had a reverse situation or is this a permanent way of life for urinary retention re: enlarged prostate. My husband was given several choices of avenues to consider (Greenlight laser prostatectomy,Transurethral Resection of the Prostate (TURP) but decided on Suprapubic which just basically moved to another spot, from a uretheral cath to abdominal cath (SPC)

36. Tim
    Thanks for your thorough explanation. I just thought urologists were trained one way in installing spc(s). Little did I know. I will have to inquire with my urologist.
    Thanks for all the info.
    Dennis

37. Happy new year everyone. Regarding nurses and SPC changes, I was taken by ambulance to hospital in early fall. In emerg, one nurse changed my chath although I was in for suspected heart attack. I told him that the amount of tube that was inside my bladder was an exact length. Well, he
    felt confident he could “eyeball” the length. Wrong. Up in ICU, hooked up to bells and alarms, I rang the night nurse. I felt like there was a hot poker in my urethra. The curtains opened up by an ancient nurse. When I told her I needed help with my cather she told me she knew nothing about SPCs. MY husband and I made the change ourselves with the help of a trusty measuring tape.
    I am plagued by UTIs monthly now. I wnat to try low dose antibiotis prophylactically but nitrofurtoin doesn’t seem to treat many of my infections. Any comments or ideas would be most welcome.

38. Mabeline,

    I had the Green light and the TURP at different times. The problem was that the urethra would not stay open because the radioactive seeds I had in the prostate kept closing the urethra. It certainly can’t hurt to try to open the urethra through one of these procedures. I think I lost the function of the sphincter on one of those procedures, but it really didn’t matter in my case because it closed again anyway. But it would matter a great deal to you if the urethra remained open.

    Hope this helps.

39. Was pleasantly surprised to see that we can now go straight to the newest comments. Thanks for that.
    I read that some people leave their SPC in for long periods of time. That may lead to problems. I have been advised by my urologist to have it changed every six week; no longer!
    The flip-flow should be changed every week, although I often forget and change it less often.
    Changing the catheter used to be quite a painful procedure in the beginning. However I found that taking one 30 mg codeine tablet with two paracetamols an hour before changing the SPC ,the procedure is completely painless.

40. Thank you Bill for the above info re: Green Light and TURP. Question: why is it advised to change spc every 6 weeks or so at home by a caretaker or family member? I understand reason for spc change but why at home with a trained (family member). Why not every 6 weeks in urologists office? I also am getting impression on reading that one needs a (BASICALLY ) trained medical professional in this urology field of changing the spc. I am very nervous taking this upon myself as (wife) to do the spc change. This is completely out of my comfort zone inserting the spc.

41. Mabeline,

    I changed the catheter in the urologist’s office for the first 3 or 4 times. When I had the balloon fail between changes ( after 3 weeks) and needed to get to the urologist’s office which, in my case is an hour away, and may or may not be open, I was interested in alternatives.

    If your husband is one of those that has some of the real medical concerns as some of those on this site, it may not work, but there are also many of us out here who go through changes without a lot of trauma. I sit in the bathtub to reduce complications from unwanted fluid spills and my wife hands me a catheter with the lubricating gell on it. If I keep a finger on the old catheter to keep track of how deep to insert the new one, it is pretty simple.

    See the step by step instructions on this site and by all means, go through it in the urologist’s office before moving home.

42. I guess I don’t understand the need for a “caregiver” to change an SPC – I change mine everyday – and have never had anyone else insert it other than myself –

    I could understand for someone who physically can not – but it doesn’t seem that difficult or complicated. Am I missing something?

    And to overcome the length issue – I have developed my own design catheter – which has a “ring” cemented to it (and then it is bent 90 degrees – to snug under clothing) but even if you don’t do that – why not purchase “high quality” washers with the proper center opening (equal to that of the catheter) – and about 2 inches (50 mm) in overall diameter – and CEMENT it (super glue will work on this) at exactly the correct length to the catheter – and then you never have to worry about over insertion.

    You might also find you don’t NEED a “Foley” catheter – just put an elastic “band” – can be underwear over the catheter with the cemented “ring” – and it will stay in place as long as you want.

    Without the inflated “Foley – BALLOON” to “worry” about – it is also MUCH easier to insert – and certainly to remove.

43. Hi. I have changed my own SPC now for 4 yrs. I do it every 8 weeks and clean the flip- flow at the same time and reuse. I have only had three infections in this time. Taking out is the easy part, although occasionally it does stick,and you have to give a tug. I have learned from experience not to push the new SPC in too far, I don’t measure but go slowly and stop immediately upon getting urine coming out the new cathater. If you are able it is a good idea to become comfortable changing yourself even if you have it done by nurse/Dr. routinely, then in an emergency you have the confidence to change. And who knows your body best and has to endure a cathater incorrectly inserted by someone else.

44. For those who struggle with recurring UTIs: here is one suggesting that you, most likely, will not hear from your physician: there is an abundance of clinical evidence that supports the use of essential oils, particularly oregano, frankincense, lemongrass, sandalwood, or a blend from doTERRA called On Guard. Below are a few of the many clinical studies on the effectiveness of essential oils. These oils can be applied topically and/or ingested. Understand that there are many “brands” to choose from, some are diluted with other fillers that should not be taken internally and some are pure, certified therapeutic grade oils, such as doTERRA. These oils have natural molecular compositions and are gentle enough to be used by adults and children, a like.

    You can purchase or request a sample from this website: http://www.mydoterra.com/mystique

    References:
    http://www.ncbi.nlm.nih.gov/pubmed/23484421
    http://www.spandidos-publications.com/10.3892/ol.2013.1520
    http://europepmc.org/abstract/MED/24716181

45. Mine has to be changed by urologist, I get bad muscle spasms in arms, legs, back, neck & bladder/abdomen which leave my body contorting sometimes for hours so have to be sedated or anaesthetised to relax everything enough to get it done. I refused a urinary diversion 2 years ago not wanting a big operation. Now I think I should have had it done but we have a new urologist who isn’t keen. With MS the regular sedation/anaesthetic sets me back weeks each time…..can’t keep going through it.

    I would prefer to be independent doing changes myself & not going to urologist! I also get regular infections & am concerned about antibiotic resistance. Sometimes I feel as though I’m stuck, infections & spasms drain me and it gets harder to fight my way back to being as fit and healthy as possible. That’s when I remember Nemo film……????….Dory’s just keep swimming. For all those who struggle with SPC changes it is harder & more painful for some of us, for those who can do these themselves & find solutions to pain/infections I admire you.

46. to MissPies, re being plagued with urinary infections, I had this experience and my urologist said I was only sensitive to one antibiotic so only to take them in an emergency. Now I drink and drink and drink water and take a strong dose of Cranberry Powder each day, and so far my urine has been completely clear for several months. I am sure flushing it through has done the trick.
    Also I stopped using a flip flow, because urine was sitting in my bladder, but with a bag (which I hate), it flows through continually so my bladder is empty. This has helped loads. Also, there was the same old problem of trying to find a suitable place to empty my bladder, as I spasm before my bladder is 1/2 full.
    Hope this helps your infections problems.

47. Ruth, l tried a flipflow valve – but l have no control of my bladder at all – so have to have it on constant drain with a bag. l use a 600ml bag from Manfred Sauer. With a female short length cath and a bag with a direct connection – so no tubing. l find this the best way. l thread a lace threw the slots on the side of the bag and tie it around my waist. My underwear keeps the bag neatly in place across my tum. l can wear tight jeans/leggings shorts without it showing. And l do not connect to a night bag – l find the 600ml bag sufficient so l just stay the same. To empty l just undo the top button of my jeans and take out the tap end – which is by my hip. l take D-Mannose – and also drink Apple Cider Vinegar with honey and water. This is alkaline – so calms the bladder and reduces the chances of uti’s. l drink lots of water to keep it well flushed. And l do not use the bladder wash – l think the more you handle the catheter the more chance of picking up an infection. l do spray the site with colloidal silver. Which kills all known germs – especially the hospital ones. And is safe enough to spray into your eyes.

48. l just wanted to add – that the reason l wear my SPC this way – is there is no tubing to kink and block – and no stress on the catheter site with the weight of a urine bag strapped to your leg. Which l find so degrading – we need as much self-esteem as we can! And it works – flows so well.

49. Hi I am still confused? How does the tubing with a 600ml bag put on your waist work? Doesn’t it show on your clothes? Yes your able to wear your shorts, jeans etc but you need to wear a loose top right? And to empty how do you go about it? I can only use one hand.

50. Newbie here,
    I apologize in advance for these questions, you may find them silly and rite, but I am being serious.

    I am getting a SPC on Monday in prep for a urethroplasty next month. When I come home with SPC, my wife will be able to have the day off work and take care of things around the house. When she goes back to work the next day is what brings up my question(s).

    We have a 45 pound dog without a fenced in yard that needs to go out and do his potty thing on a leash roughly 4-5 times per day. Will I be able to walk him in the yard? If he sees a rabbit he can pull pretty hard (must be the beagle in him).

    Also, we live in an old farm hours with a well. That is our source of water. I am not sure I should clean the site with well water, suggestions?

    Thirdly, we heat pretty much with cord wood. We go through three large wheel barrow loads per week. I am guessing I will not be able to move a wheel barrow of wood. Will I be able to go to the basement and bring some wood upstairs and bend over to put in the wood stove?

    OK, lastly I have a belly. I am concerned of the placement of the SPC and then when I bend over or sit down it would pinch off the tube. Does this happen?

    What else would be helpful advice.

    Thank you so much for your replays!!!!

    Dennis

51. The only tubing is the – about – 7inches of the catheter – which is curved down and around – half circle to connect straight to the bag. The bag is big enough to lie flat across one side of my tum with the tap end just below my waist at the hip. The bags from manfred sauer have a cotton feel backing so very comfy on my skin. Tight short style pants keep it all well supported. l have been doing this for nearly 20yrs. l do frequently empty it. At night, l stay the same. lf l need to empty in the night l can do it with a plastic bottle if l do not want to get out of bed.
    l have even emptied the bag whilst on horseback. On a long hack – l might need to – pull up where nobody can see. Often emptied it into a bottle when in the car on a long journey. Believe me it works.

52. Trampergirl…..I have always used a flip flow valve as advised by urologist. I’m now wandering if that’s why I get so many infections as I’m constantly handling areas close to catheter. I tried an abdominal bag a few years ago but it didn’t flow well.

    Cranberry juice etc. didn’t work for me. I think I’m going to try the 600ml bag the way you use it, it’s worth a go and it means I’d be handling the bag valve a lot further away from catheter itself.

    My hands don’t work well so handling a flip flow valve close to my catheter means I probably don’t help keep infection at low levels. Bag might be easier with muscle spasms too as I often tug on the catheter when emptying via flip flow as my arm or leg starts dancing around without my permission.

    Thanks for description….I’m off to try this.

53. I “second the motion” about the waist bag – that is also how I use my SPC – I connect it to a “Belly Bag” (1 L) – same idea – which comes with a waist strap – and then (for additional support – which is not really needed) I use an elastic waist “band” – I use several different types depending on activity – including running and swimming (as well as sleeping).

    I’ve been doing this for over 4 years – and have it down pretty much to a “science” – and (as an added benefit for a male) it can be emptied at any “conventional” STATION (LOL) without ANYONE knowing you are emptying a “bag” – and NOT “yourself” –

    Great conversation about this.

54. Trampergirl, that’s awesome your ‘invention’ as I’m sick of the tubing and have to keep the 2 pieces of tubing tightly taped because they come apart so much, at the most awkward moments. I’m so glad to have the name of the firm too, as all we have downunder (New Zealand) are foley catheters and no choice of bags. I have a latex allergy so hope I can get those catheters in latex-free. My husband has been trying to organise something similar to your idea, but we can’t do it with the catheter I am provided here.
    Yes, the flip flow valve can definitely contribute to infections (if you are prone to them) because having the bladder full much of the time is not helpful. I know many of you use them successfully but certainly not me. Thanks for all those helping on this site, don’t know how I’d manage without it. I am in my 60s and been severely disabled following polio when I was only 3!

55. The 600ml direct valve drainage bag l use is by Manfred Sauer. They are a company who employ disabled folk – so their products are correctly designed to help everyone. ln the UK – l get all my ‘kit’ on prescription via nhs.
    The code for the bags is 710.2204S. But l expect other providers also do direct valve bags. l use a cord or trainer lace – [lots of colours to choose from] as long as it is comfortable to tie around your waist. l wear tight stretchy shorts style pants to keep it all tucked in. [Tesco’s do lovely ones in packs of two.They look tiny – but lots of stretch] l can also stay like this in the shower. Just have to dry off the bag afterwards and replace the cord for a dry one. l am waiting to try the Duette catheters – with the two balloons. A friend managed to get hold of some when on holiday in Florida. Hoping the manufacturers are soon able to export out of US. The short length female catheters are easily available everywhere. Just insist that is what you want. l think we can so easily be fobbed off. l am now 67 – and have had MS for 32yrs. A SPC for 20. The short length cath would also be suitable for men wanting to use the belly bag. The LESS tubing the less likely hood of the tube kinking and blocking – and of course the dragging on the cath site. Who wants a bag of ‘pee’ strapped to their leg/ankle?

56. Hii all..
    On 28 october I met with an accident that resulted in pelvis fracture and urethra injury..
    In 29.10.2014 afternoon doctor put SPC and till now it has not been removed..
    The RGU MCU reports of 29.10.2014 shows that my urethra has been broken but it does not show the length of breakage..but on 05.01.2015 I had again gone for RGU MCU…and the x ray film shows that my urethra is damaged from bladder end to penis end…
    Now one renouned doctor told me that I wud undergo operation and success rates are 70%….erection is also 20% left with alot of pain….what should I do..I am very afraid..
    And every catheter change gives me unbearable pain in anus and testicals..especially left one..
    Also the spc insertion area is left open…wat care shud be taken care to keep infection away..

57. Oh thanks so much Trampergirl – nice to hear from folks in their 60s, as we still need our dignity. I have worn leg braces since I was 3 and to have a bag of pee strapped on top of a ‘caliper’ is horrific at times. And it will drop lower as it gets more full!
    I’m going to find out what we have here in NZ, but I originally came from the UK and have all my relatives there. Must have been a long trying 32 yrs but you are obviously able to overcome your difficulties. I have a book written by a woman in Christchurch NZ who has had MS about that long too. It is called “As for tomorrow, I cannot say”
    I have the spc because I cannot manage toilets now (transferring).

58. I recently got my spt and just had my first change out of a tube. I go to VA and they don’t tell you anything. I went in scared. And came out in tears. They tried to get an 18 gauge in and couldn’t. I was screaming in pain. They finally shoved the 16 gauge back in. I can’t do this anymore. After 49 surgeries since the war its to much. I don’t know what to do. I was just in the ER because of the grey drainage from around the tube. I have already had a staff infection from all the knee surgeries. When they put the pic line in they hit my heart which if the infection wasn’t bad enough I had three knee surgeries in 15 days. Now I have heart issues as well. This can’t be good. My stomach is so sore I can barley walk. This is not good. I don’t know what to expect or what’s ahead. By the time you finally trust a doctor they are gone. I feel like there is no hope. Nobody understands.

59. I am getting a new spc in the morning. Never had one, They will put me to sleep. How much discomfort can I expect Post surgery? anxious!

    thanks!

60. Dennis:
    Typically you will be put under general anesthesia (certain techniques may only require local sedation). There are 4 basic techniques (see my above post) used for SPC insertion. Not all urologists utilize all options and complications, discomfort and recovery are subject to the technique used to place the SPC. Sorry I can not be more specific as to your situation. In reading your above post, there is a safety aspect as to where a suprapubic catheter is place. The most important concern is to avoid puncture of the peritoneum cavity to avoid accidental puncture of bowel. Consult your physician on activities and lifting after your procedure and you should be directed as to maintaining and cleaning your SPC site.

    If the SPC is for long-term use, make sure catheter exchanges are done on a routine basis to avoid calcification and UTI. Guidelines defined by the FDA for SPC catheters is to exchange on a monthly basis. For your exchange catheters, I would suggest using a catheter that is cleared by the FDA specifically for suprapubic use, as testing and clinical evaluations required for the SPC application are different for urethral catheters vs suprapubic catheters. Contact me if you have any other questions or concerns.

    Tim

61. please remove me from your mailing list

    ADMIN: Wayne, click unsubscribe at the bottom of the next email you get from us.

62. I have had my spc for a little over a year and half. This web site is a blessing as I have had no real information on what I have been experiencing until now. My bladder was damaged from chemo for bladder cancer (we think). My urologist has been injecting botox into my bladder plus the insertion of the spc. Most of the replacements have been painful, but take a muscle relaxer and that seems to be better. I prefer going into out patient surgery, but that doesn’t always work out as the spc needs to be changed sooner. My main problem is pain usually for at least three week after. My doctor then usually gives me an antibiotic saying I have an UI. Now I am on a daily formulated irrigation of Gentamicin with saline which other than being very expensive, doesn’t really help. The pain is situated like in my publc bone ? Any ideas?

    I feel a little silly as my problems seem minor compared to many of yours, but it helps to normalize my experience at least by reading all of your comments and solutions to some very complex issues.

    Thanks!

63. Hii Dennis T

    You will have some pain after u r in ur senses. .
    won’t hurt so much…but may be u get little bit discomfort while passing stool…but its a mind game..do not let ur mind know that u have one spc…

64. I wanted to take a moment and pass on some very valuable information that has now been demonstrated to be clinically confirmed in three clinical trials is the US. This is important for both urethral and SPC catheters. Some background information is in order.

    The indwelling urinary catheter has not changed its design in over 75 years and is well documented to cause trauma to urethra and bladder tissue. This reinforces the patient-centric concept to reduce all harm.

    In its research, Poiesis noted the clinical damage to the posterior wall of the bladder caused by the catheter tip and drainage eyes, and was able to attribute poor drainage or no drainage to mucosal aspiration of the bladder tissue into the eyes.* Poiesis then identified the body’s natural defenses to the bacterial attachment required for a symptomatic infection to occur. First, the mucosal lining acts as a barrier; second, the act of voiding flushes bacteria out of the body. Both of these innate immune system defenses against infection are disrupted by the current Foley-type catheter.
    Poiesis hypothesized that a healthier, more intact bladder lining accompanied by better and more consistent drainage would result in reduced infection events. Using the newly designed and patented dual balloon Duette™ catheter, three clinical trials in both acute and long-term care (LTAC) demonstrated no infections. In addition, other adverse catheter-related events were significantly reduced (blockage, bladder spasms, hematuria, and leakage).*

    So the clinical importance of the bladder’s two main innate immune systems have been confirmed. Reducing the acute tip damage is important. Identifying a catheter with a small tip and/or no tip should be useful as well as not utilizing a Foley type catheter with an open tip as these may damage the bladder lining more severely.

    The subject of FDA and catheters is identical for both SPC and Urethral type catheters. Each has a standard less than 30 day use label indication as well each has the same sterilization, clinical testing and chemical testing are identical. The main test that comes into play with all indwelling catheters is ASTM-623-89. The only area where additional safety and efficacy testing would come into play would be if the manufacturer is seeking additional labeling outside what is the standard for indwelling catheters. So if a manufacturer stated for example their catheter could be used for longer than thirty day that manufacture would be required to demonstrate its materials used in the fabrication of the device met safety requirements for the intended extra use. Additional chemical testing would be required.

    This is a very big subject that can be reviewed at this link
    http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/GuidanceDocuments/ucm080884.htm

    The main reason SPC manufacturers have their own filings with the FDA is because many have a different type of catheter either used in connection with other instrument like guidewires, trocars etc. But the main default is that every catheter should be employed under a doctor’s script so this trumps the entire issue.

    Please let me know if anyone has questions and comments I was seeking to enable a fair and balanced platform so nobody worries about their particular catheter uses and type. There is enough to worry about then if my catheter meets a standard that was utilized over 50 years ago.

    At the end of the day everyone should be using a catheter that reduces bladder damage, so would you want a tip or a catheter tip that looks like a straw at the end or a catheter with no a tip altogether.

    Thank You

65. So glad to have found this site. My husband has had an SPC for almost two and one-half years. Now he is due to have it removed next week. He is very nervous about this supposedly exciting event because we know how difficult it would be to put back in.
    He has been training his bladder by plugging the cath tube all day and trying to go on his own. When this became more successful, he has been plugging at night and wanting to wake up when his bladder gets full. This has proved difficult. Many nights, he doesn’t wake up in time and leaks in the bed. This is very distressing to him, but I see it as the process of getting his bladder to work again just like any muscle.
    Has anyone here had the same problem or know what else he can do? Perhaps some type of exercise or technique to strengthen his bladder?
    Thank you in advance for any help.

66. Duette

    I have been reading everything I can about the duette catheter and am very eager to try it. I have relayed the You tube videos, etc. to my doctor hoping she will take the time to review this as a possibility for me. I have had a suprapubic catheter for 18 months, and during that time I had one insertion that was done in the hospital that was not painful afterwards and had no leakage. She did inject Botox, which she has done every 6 months. It was a wonderful holiday not to have pain or have to wear a pad (which also added pressure pain). But just before I ready to go into hospital again for a change, the catheter was being rejected with much pain. It was replaced in the doctor’s office, which with a muscle relaxer wasn’t too bad, but ever since then I have pain and leakage. I am due to go in for another replacement in March and am hoping I could get it replaced by a Duette. My bladder is very small and sensitive due to bladder cancer and chemo which is why we think I have the problem of bladder retention, UI’s. With the botox treatments, the bladder wall are looking more healthy. I use a belly bag, and the tubing does get tangled up, especially if I have to wear a pad, but it is so much better than a leg bag as I have been able to leave a pretty normal life. I also swim and just use the belly bad as the plug put too much pressure on my bladder. It seems to work fine.

    I really appreciate this site. It has helped me emotionally to not feel so helpless and alone in dealing with what to me has been a life changing situation. I feel better to hear some of you have had catheters for 30+ years as I was fearful of my future–where does one go if this doesn’t work and really is this all worth it? Thank God I am 75 and won’t have 30 more years!

67. SusanF,
    Yes, the Duette catheter sounds the answer to a lot of our problems.
    lts still not available outside of USA. But l was fortunate enough to have a close friend staying with her son in Florida – near the Poiesis people who make the Duette. l contacted them and they have allowed me some samples which my friend was able to collect. She is now back in UK – so will soon be able to try one.

    Hope you can get ‘tube free’ soon – as it is much easier to manage.

68. Hii all..
    On 28 october I met with an accident that resulted in pelvis fracture and urethra injury..
    In 29.10.2014 afternoon doctor put SPC and till now it has not been removed..
    The RGU MCU reports of 29.10.2014 shows that my urethra has been broken but it does not show the length of breakage..but on 05.01.2015 I had again gone for RGU MCU…and the x ray film shows that my urethra is damaged from bladder end to penis end…
    Now one renouned doctor told me that I wud undergo operation and success rates are 70%….erection is also 20% left with alot of pain….what should I do..I am very afraid..
    And every catheter change gives me unbearable pain in anus and testicals..especially left one..
    Also the spc insertion area is left open…wat care shud be taken care to keep infection away..

69. Re the Duette product…

    Appreciate the kind words and yes we are hopeful resolution for outside US sale occurs soon. While nothing is 100% we have been extremely satifyied to date with results in the hospital and outside.

    More importantly this site has been a blessing and the people on the forums are so helpful. Hands down
    the most helpful and insightful venue on the web!!!!

    Thank you
    Greg

70. Hi
    I haven’t contributed to the site in ages. I’m an incomplete quad with a SPC with changes x6 weeks
    I was having a lot infections causing major leaks.I use a 900ml day bag strapped to my lower leg (just required extra tubing) and 2L night bag My infections are now controlled by an antibiotic prophylactially.
    I am very lucky for here in Canada we have a no charge gov’t service called “Victoria Order of Nurses” which is not only available to change the catheter, on a regular schedule, but is on-demand for flushing as required. They also provide day and night bags on demand. They have also provided plugs to be used with the catheter so that I can go for periods without a bag.
    From the problems I see from others, I am truly blessed!
    My philosophy is we can either laugh or cry, and I can’t afford all those tissues.
    Thanks to Graham for his ongoing fantastic forum,,Kudos my friend

71. Bob – Hi There,
    Have you looked into the ~Poiesis Duette catheter – look on youtube – it shows you the damage the foley type does to the bladder wall – causing infections and blocking. l am in the UK – but l would have thought you could get the Duette as it is available in US. lts FDA approved/licensed. We are also fortunate in UK – l do not have to pay for any prescriptions – and the nurse comes to the house, every 5 weeks, or when l need her.

72. Does anyone here know of some ways to strengthen the bladder so that a SPC can be finally removed? My husband has been trying to plug the tube every day and night to be able to go on his own. But the problem has been that he does not wake up at night and then he will leak. This is very distressing to him and he needs to know if it will be better especially when he has the SPC removed.
    Thanks for any help we can get!

73. Hi everyone, in addition to my previous post about my husband’s SPC, I want to tell all of you about the “invention” that my husband came up with for wearing either his leg bag or just the capped tube.
    He took a wide strip of elastic and had Velcro sewn on each end. Then in the middle of the strip, he secured one of the plastic clips that has adhesive backing that are made to stick on the skin of the leg to secure the tube. But instead of sticking it on the leg, he attacked it to the elastic strip.
    Now he can wear the elastic strip on either leg with the tube secured in the clip. It has been such a wonderful thing for him that we wanted to share it with you.

74. Hi,
    Monday my urologist installed a SPC. My first. She (urologist) said I could shower on Wednesday and change the dressings when it gets wet. We changed it Wednesday night. There was some blood in the dressings. We changed the dressings tonight (Thursday) and just a spot of blood. The pain / discomfort from the install seems to be getting less. The dr. said to just wash the area where the spc tube enters the body with some warm water and mild soap. Since this is new, I ask you all how ofter? Everyday? Every other day? Pointers for an ANXIOUS newbie in the US that is worried about infection? Thanks!!

75. Ruth: you are just “Ruth” now ok?

    Sandy: that is some major trauma. Depending on exactly what kind of operation they are suggesting you might be better to stay with a supra pubic catheter or stoma.

    Greg: if you are interested in having your own article/page about the Duette Catheter published here I am sure many would find it useful and comment.

    Bob: great to hear you are still positive and kicking around buddy.

    Eugina: perhaps hubby could leave the night bag on a shelf slightly higher than his bladder to create back pressure. Increase the height now and then until the bag remains empty. Doing so can increase the chance of UTI’s so don’t attempt if he’s prone to UTI. In that case perhaps a Uridome (condom with a tube) will catch the overflow until bladder is retrained. A tens machine may help build bladder muscle strength but you should consult a urologist about all the above first.

    Dennis T: everything you need to know is in the article above; Restrict movement, drink 3L/day, wash all you like but dry well and clean the site with an alcohol wipe or other sterilizer afterwards or at morning and night, 10min exposure to sunlight daily is also beneficial to healing well.

76. Thanks Graham for taking off my surname.
    Sounds like Sliders Paw is very depressed, hardly blame him, but he’ll die if he goes on without any hope.

    Admin says: no worries, we respect anonymity. Just check the name field in future comments or register so we can effect it site-wide. We appreciate your participation upon our website.

77. Graham,
    Thank you for your response and this site!
    DennisT

78. Thanx Graham.

    But I did not understood one thing..
    report of RGU and MCU just after my accident(28.10.2014) shows that the iodine solution has passed to some extent…but report of RGU and MCU dated 03.01.2015 shows no passage of iodine solution…which means complete urethra is damaged. ..but why urethra is visible in RGU of just after my accident..
    Also please tell why there is a pain in my anus after every catheter change??

    Nd how to keep the catheter site clean ..nd since last 3 months I am doing sponge .. can I take bath now??

79. Hi Graham, and others,
    It’s been a long time since I was last on here. I’ve recovered from my breast cancer, 2.3 years remission and doing fine, some residual effects from chemo, but that will pass in time.

    As for my SPC, it’s almost 4 years, and I recall at 4 weeks crying saying I can’t live with this thing ever!!… well, for the 1st 2 years I had trials and tribulations! But then figured out a few things, and this might help the people who are having problems with theirs…

    AVOID ACIDIC FOODS!!!…. DO NOT EAT anything containing vinegars or acid like mayo, pickles, tomato sauce, bbq sauce, mustards, chillies, capsicum ( bell peppers), Oranges, Lemons, Limes, pineapple, tomatoes, also not too much chocolate!…. I have researched and studied over the past 4 years, and used myself and another friend with a SPC and we have noticed that over eating these things, on a daily basis, irritates the lining of the bladder, THUS causing pain and sometimes bleeding! It irritates the stoma to becoming swollen or tight. Since avoiding, or minimising these food items, I have become very comfortable over the past 2 years!…. And drinking at least 6 glasses of water a day, as over drinking can also irritate the lining. Remember, we can’t pee normally, and whatever is left at the bottom becomes stagnant residual leftovers, and will cause an infection, so AVOID acidic juices and carbonated drinks like Lemonades, too much caffeine and limit alcohol… it’s fine while your under the influence, but the next day….I drink Jim Beam & coke, and I limit myself to one can a day, as too much excites the bladder wall and becomes painfull!!… I’m also on VESICARE, a type of ‘valium’ for the bladder, one every morning is all I need, and trust me, THAT REALLY HELPS with spasm’s, I don’t get them anymore! I was thinking I had an infection ALL the time, and had pills left right and centre until Vesicare, I haven’t had an infection for a year! SEX also for a woman can be irritating, so let out before, AND after sex, and try laying on your side, and gently does it! The lining between the vagina and the bladder is paper thin really, so be careful! Less is more. With my changes, sometimes it might stick a little coming out, so I brace myself and cough hard, that helps if it’s stuck. My Dr and I have it down to a fine art now every 6 weeks… I take Panadol ( paracetamol) an hour before the change, and also a 5mg VALIUM ( diasapam) around 15 -30 minutes before so that by the time I’m on the Dr’s table, I’m very relaxed! I empty just a little as well, as having some fluid there actually helps with it to slide out easily… you might get a little wet, so wear dark pants, and get the Dr or nurse to pack those ‘bluey’s around the side it comes out. My GP sends me down to the procedure room, and I set it all up as I bring my own cath and valves etc… I just set that and his gloves and stuff up, he also uses LIGNOCAIN gel, an opium based liquid that he squirts in the hole, it numbs it a bit and makes the transition easier as well. I clean the wound every day, either by shower or hand wash, I don’t lay in baths, haven’t had one for 4 years now ( I know, I smell terrible! lol )… and I wear a soft compress that’s cut into a Y shape to go around the tube and I lightly tape that on my tummy as well as secure the hose to my tummy. I use a non irritant brown tape. I’m free flow cath, no bag, except at night to sleep through. … It saddens me to read peoples pain, and I HOPE this helps you!! I just turned 50, and come through 2 bad cancers, my bladder being 15 years ago now, and numerous surgeries to try and get me to pee normaly, but I am happy living with my SPC, and if any of my suggestions help you, that’s awesome!!… oh yeah, and eat at least 2 sticks of Celery a day as it’s a natural anti inflammatory and eases the pain a lot, and avoid the cranberry, too high in Vitamin C which also irritates the bladder!! Asparagus once a week, anymore can bring on gout! ( I am a qual CHEF of 30 years and a Food Stylist, I rely on my foods to keep me healthy and comfortable )…. GOOD LUCK ALL!! XXXXX

80. P.S….. I use a 16 guage RELEEN Cathetar,

81. Hi Gayle, I found your article interesting re bladder comfort. Does apple cider vinegar (good for infections) cause spasms? I get trouble with spasms and often think I have an infection with no temp. etc. but just pain and discomfort.

82. Thank you Gayle for all the information. Will try everything!! I have found diet to be so important in my quest for health, but I did not know about acidic foods and their interaction with the bladder. Unfortunately I just love pickles, hot chilies etc, but if I can become pain free–Great. The soft compress around the tube is new also–I have never used anything, but notice a lot of crusting around the opening. I wear a belly bag which I suppose isn’t the best, but the leg bag was too confining, so I just have to be careful that the tube is situated for easy flow.

    Thank you again everyone!

83. Wonderful site. I’ve had a spc for 6 months as wheelchair bound with MS & early going had a lot of uti’s, but been clear for 2 months now. Yay. Biggest problem is I have occasional accidents in my pants. Don’t understand why I pee my pants when I have a spc! Does anyone else have this problem. It can happen when I’m sitting or lying down & I do not know it has happened. Tubing is not twisted too. Any ideas? Thanks a bunch.

84. Suzan, I had a spc for 4 months, and I also had a condom catheter on with a collection bag. It is most certainly possible, especially when lying down as your bladder is like a baloon filling up with water. The sphincter at the base of it, which is normally closed, is like the end of the water baloon. You will leak if it opens before the fluid in your bladder fills up enough to reach your spc tube. You should check with your urologist, cause you might have a uti. You can ask for a urodynamics test to be performed, so that you can know how much fluid can fill up in your bladder before spontaneous voiding occurs. Your kidneys produce about 100ml or cc of fluid an hour, which is about 4oz.

85. Suzan, If the end of the catheter – gets stuck onto the bladder wall – it will cause a by-pass of urine. The little drainage holes can so easily get drawn into the bladder. Also if the catheter is too far in – it can irritate the urethra and cause discomfort.
    And if you have lengths of tubing it can easily kink and cause a blockage. This is why l do not have tubing. Short female length cath and a bag with a direct valve contact.
    The new catheters – Pioesis Duette -l think could be the answer as it has two balloons – one on the very tip to stop the drainage holes getting blocked up.
    l too have MS – had it 32yrs now and a SPC 20yrs. My MS is Primary Progressive.

86. My husband finally had his SPC removed two days ago after more than two years. We were told that the hole would close on its own by 3 days, but it hasn’t closed because there is a granuloma blocking it.
    We never knew anything about this. Has anyone here ever had this or heard of it?
    We just don’t know what to expect because now he is leaking a great deal.

87. l would have thought they could have put a suture/stitch to help close it up. ls he draining normally.

88. Hello,

    I have a question for anyone who can help me. My mother had to get a suprapubic latex-free catheter last July of 2014. Since it’s been put in she has experience the following problems, blood in her Urethra (per an ER visit and ER Dr who did a pelvic exam), and constant pain in her Urethra.

    She’s gone to the ER twice since it was put in. We went to her urologist yesterday and he explained her problems are common with this type of catheter and the fact that it’s latex free.

    I’ve been reading that UTI’s – which she has received since getting it in are common and pain is common -but is it??? Also, I don’t see anyone talking about peeing vaginally or blood? She urinates vaginally and is getting blood and blood clots.

    Is there anyone that can answer this question? Is this “common” which is what her urologist is saying?

    On Behalf of Our Family
    Kristy Lugo

89. P.S. My mother uses a suprapubic non-latex catheter and it comes out of her stomach

90. P.S.S. It is also a 22 Gauge

91. To Trampergirl,,

    What sort of bag do you use? I am using a belly bag and the tubing is long so it has to loop to use the bag. I haven’t been able to find what you have with a direct valve connect, and don’t know if it is an option for me.

92. SusanF.
    l get mine from Manfred Sauer 710.2204s. Google them. You could of course just cut the tubing off and re attach the contact valve. There has got to be a way around this. The bags l use have a lovely cotto feel backing that is suitable for wearing next to your skin. l have used the same bags for 20yrs.

93. Hi All,

    It’s Kristy again regarding the questions about the issues my mother has been having with her suprapubic non-latex catheter. (see above)

94. All
    I have a SPC for less than 2 weeks. The discomfort of the installation left within the first week. Expecting to have this for 8 weeks or less while urethroplasty and recovery. I use a leg bag and at night a large overnight bag. When I change bags I have been told to rinse with a mix of distilled water and vinegar followed by a rinse of distilled water and left hung up to dry. I hope that sounds correct. My problem is that I use some surgical tape to anchor the tubing of the cath and bag tube to the leg and stomach. How do I clean the tape glue off the catha nd bag tubing?
    Thanks
    DennisT

95. Dennis,

    I’m not sure the distilled water is a must for the rinsing process. I use a mixture of 1 part vinegar, 3 parts tap water and hang it up to dry. The tape holding the catheter to the tubing is a good idea. When I forget to do that, I have had them come apart at night, which seems to dampen the mood. All tapes are not equal. I have tried several different kinds and find the Johnson & Johnson 1″ cloth tape to come off cleaner than the others. The adhesive residue rolls off the tubing if you just rub it gently. Hope this helps.

96. Bill
    That does help.

    I use distilled water because we are on a well and we do not drink the water. I still shower in the well water as the dr said that was fine. I have been using 3M 1″ cloth tape and it just get sticky and then I try to clean the tubes with alcohol wipes with very little success.

    I will look for the brand you mention.

    Thanks for the help Bill!

97. I have been with suprapubic catheter since last 3 months..I had pelvis fracture too..
    1. Can I take bath??
    2. After how much time catheter shud be changed??
    3. How the catheter insertion area to be cleaned.
    4. should the catheter insertion area to be exposed in sun?? If yes…then for how much time..
    5. can I take international flight??

98. Kristy, it is common for the first 6-8 weeks post-op, not common however for 6-8 months. The pain may persist though not as strong as initial post-op. She should not be bypassing urine or blood clots vaginally. I would seek a second urologists opinion and an ultrasound to see what’s going on. Something is not right there.

99. Sandy, read the article. It answers all your questions.

100. Yes, Read the article, on here that gives all the details on how to manage a supra-pubic catheter. lts very comprehensive. And a good idea for all of us – for Newbies and for us old hands at SPC. Always something new to learn.

     Read the facts above on this site – and check that your urologists and nurses actually follow the procedures. As from what l have heard, from lots of the posts, on here, many of you are not being cared for as you should.
     Many of you are not having the catheter changed often enough for a start!
     We all need to be more proactive – lt is your body after all.