Super Supra Pubic Catheters

1,776 thoughts on “Super Supra Pubic Catheters”

1. Hi everyone,

   My daughter is 3 and about to have an SPC placed. We find out Monday what day the surgery is scheduled for.

   I had a few questions to ask:

   1. How does this work for active people? Has it hindered your activity in any way?

   2. I know the article said you can go swimming, but can you go in the ocean with a SPC?

   3. Has your site healed or is it always “open”?

   4. Anyone on here know someone who has had it this young? How do you explain it to someone who is three?

2. Hi Rachel, 1. Many able-bodied people play tennis, hockey, golf, cycle, scuba, skydive, ride roller-coasters etc with a supra pubic catheter in no problem. 2. Salt water swimming is fine. It can actually aid healing, reduce infections, and clean around the site. 3. A supra pubic catheter site never truly heals as the body will always try to expel it. You can expect a little weeping especially in the first few months until a tunnel is formed. 4. I would simply tell her not everyone’s body works the way it should and hers just needs a little help to get the wee-wee out.

3. Hello, I have had a SPC for 3.5yrs. It has not hindered me from doing everything that I did prior. I have jogged, hiked, cut fire wood, done heavy lifting, shingled roofs, swam, shovelled snow (unfortunately). I do not where a catheter bag with mine but just drain my bladder regularly by opening a valve at the end. As Graham mentioned if I get too busy and forget to drain, nature takes over and I get the “urge” just like BSPC (before supra pubic cathater). In the time I have had the catheter, I have only had 2 major infections. The first I went to the Dr and received medication. The second that was just as bad, I drank lots of liquids and it went away on it’s own.

4. To Dave.
   I have my SPC with flip-flow now for about 18 month and have the same experience. Never use a night bag and have to get up for a leak about three times during the night, just as before. Swim and work in the garden as before. When often asked what I think about my SPC I jokingly reply “Almost like the real thing”. Only one thing is different but does not bother me very much is that when I finish urinating I get sort of a stinging sensation through the penis. I had a blockage only once which was not a very pleasant experience.

5. Hi Tom,

   Thanks for your suggestion. It’s nice to get some positive comments

6. The valve concept has more value then I feel credit has been given. The convenience factor alone warrants serious consideration. The clinical value is (in the right patient) that of maintaining bladder volume. The smaller the bladder the higher degree of leakage events (sooner) and bladder spasms. The bladder is a muscle so it can be trained to hold more volume. I have heard from many urologist that have performed diversions in young children who have years later been reconnected and the bladder came back to a normal size. Key being that during the disconnect no scar tissue was created.

   Please take the follow as an engineering perspective of how the flip-flow or any valve acts when the bladder fills and drains. The focus is the tip of the catheter first and second the drainage eyes. When fluid expands the bladder wall it is lifted off and away from the catheters mentioned working parts.

   Upon drainage each again comes in contact, this can create stinging, spasms and hematuria. Not sure with current Foley design there is not much that can change this dynamic. Perhaps as the bladder gets close to empty user could slow down the flow to lesson blunt contact with catheter and bladder wall.

   Just some thoughts

   Greg

7. I know a common reason for SPCs are for incontinence issues. Has anyone on here had them for retention issues?

   My daughter has neurogenic bladder and bowel disorder, her bladder is larger than an adults and she can go 26 to 30 hours without voiding. And when she does, it isnt a full void.

   We are hoping the SPC will make her bladder smaller due to being fully emptied and she will eventually no longer need it.

   Has anyone had luck using the SPC for retention issues?

8. My husband who is a paraplegic had a suprapubic put in a few months ago. He is starting to adapt to the new situation, he used to intermittent catheterize until this happened. However he does not know WHAT TO WEAR! Luckily this happened during winter, so he has just been wearing sweatpants and pulling them up high on his waist because he does not want the waist band rubbing on the catheter. But once summer comes and it gets hot, he does not know what to do. What do all of you do? I mean does the waist band of jeans/shorts rub against your suprapubic? I think it is harder for him too because he is sitting down all the time.

   Also when he empties his leg bag which is attached to his thigh, he pulls his pants all the way down (what a hassle), because he has to undo his straps and he says that is the only way he can get all the urine out. Is this what you all do, too. It is just so inconvenient especially when we are out and about in the car.

   Any input would be greatly appreciated, since this is all new territory for us. Thank you so much! Janice

9. Janice,

   As with many situations this too will be one which your husband and you
   will have find the best methods that works for you both. Hopefully some
   others will post some ideas.

   Regarding the collection bag there has been many new catheter valves that
   have hit the market. This might a another solution for various situations. I understand
   your husband perhaps can identify how full his bladder is getting but again with time
   he may be able to better understand when you empty.

   Good luck

10. lt is trial and error to get a system that suits you. lf your husband has any control of his bladder – he could – perhaps manage with a flip flow valve. A length of tubing connected to it to simplify emptying.
    l have MS – and have absolutely no control. l have had my SPC 19yrs. l have the short length catheter – and a 600ml direct valve connector bag. This l thread a lace through the eyelet holes and tie around my waist. So no length s of tubing – so no kinking. lt drains very well. And all l do is undo top button of my jeans to get the tap end out to empty. This can be made easier with a length of tubing connected to help emptying. l can wear shorts/leggings/tight jeans/ short skirts with no trouble. At night l stay the same. lf l did need to empty during the night – and did not want to struggle to get out of bed -l just empty into a plastic bottle.

    Also, l have my catheter changed every 5 weeks – as this suits me. Any longer and l find it quite painful as the balloon end gets crystallised.
    Hope this helps – but try not having the bag strapped to his leg. Every movement will drag on the catheter site and must be uncomfortable for him.
    l get my bags from Manfred Sauer – their products designed by and for disabled people. They will send samples.

11. Janice,

    When I wore a leg bag, I put an extension on it to put it on the calf. It seemed a little more accessible. I spend most of the time with a Rusch belly bag, which is a little more accessible through conventional clothing and is no problem with shorts. I do get clothes with a little more room in them to accomodate the bag. If he has bladder capacity, the flip flow valve on the end of the catheter may be easiest to deal with.

12. Hi Janice.

    I have had an SPC for just over two years now and I use a flip flow attached to a leg bag which is strapped on just below my knee. (Conveen leg bags which come with different length tubes). I use some tape on my thigh to stop the tube from pulling on the SPC and it works for me. (I move the taping site so my leg does not get sore). Unfortunately I have a quad belly, but this conveniently allows the SPC tubing to be protected from chafing by waistbands. However, fortunately I have some sensation in my bladder and so I try to leave it fill up as much as possible. This is not always accurate and sometimes there is not as much as I anticipate but, as mentioned in previous comments, I think it is important to maintain capacity. I am a pretty independent quadriplegic and I find that this works very well for me. At night I connect the leg bag to a night bag and leave the flip flow open and this enables me to get some sleep. If I didn’t I would be constantly being woken because I can pass up to 2 litres in a night. Hope that this might give you other alternatives.

    Les

13. My daughter has had the suprapubic catheter now for almost a month. We were told this would be better than the intermittent catheterization which was hellacious for us.

    We were told her bladder was too large for bladder spasms, but she has them and screams for 20-30 minutes at a time. She’s on oxybutinin but they dont want us using it all the time since she already has retention issues. We were told its hard to pull out, especially for a kid, but she was able to partially pull it out and had to have it reset and her bladder irrigated.

    We were told to expect some blood for up to 7 days post surgery and yet we get blood every day at almost every emptying and times like tonight where its almost straight blood.

    How long did it take for the spasms and blood to go away for you guys?

    Add to this that she’s only 4 and doesnt know how to deal with all of this. We’re worried about how emotionally damaging this is to her but we’ve got no choices…leave it alone and she’ll have kidney damage by 6 years old and kidney failure by 8. Intermittent catheterization has her screaming and thrashing and angry and volatile. This has her screaming and in panic attacks and bleeding like crazy.

14. Hi Les,

    How do you attach a night bag to your leg bag with a flip-flow valve? To attach my night bag I have to detach my leg bag from the catheter and then attach the night bag to it.

15. My wife has had a SPC for about 10 years, Last night she passed a Kidney stone during her sleep. The retention bag was quite bloody, but the bleeding had stopped by morning. She has had problems with bladder stones, but this is the first Kidney Stone. Is there any need to worry about the passed stone being in the bladder, or should it be removed. The Dr. calls her Mrs sand and gravel as we really have to watch the oxalate intake.

16. Hi Bill,

    I do not detach my leg bag, I simply attach the night bag to the opening of the leg bag and leave it open. It works for me. Before, I was constantly waking up when my bladder was filling up and I was using condom drainage, but now sleep is easier. (I have the added problem of severe sleep apnea and have a breathing machine which is under utilized because of sleeping positions.) Hence, any sleep is more than welcome.

    Regards,

    Les

17. Ben,

    You should see your Urologist and have the “now” bladder stone removed. Many are passable on their own depending on the size.

    Greg

18. Dear Rachel
    firstly, really sorry to hear what agony your gorgeous little girl must be going through. I really don’t think it is ‘regular’ or ‘normal’ for there to be so much blood or so much spasming occurring for her. You need to see your urologist again – or at least your doctor. I think she has an infection. She must keep drinking lots of water too. I try and drink at least 2.5 per day. I also think she needs antibiotics and to stop spasming, there are other drugs that can help.
    Let us know how you fare… and do you have a continence clinic in your neighbourhood?
    regards
    JW

19. Hey everyone, it’s been a long time, I’ve been caught up in life. Still in remission, but our 25yr old son has terminal ACC cancer, and our 29yr old Daughter has cancer of the Thyroid. Dr’s say I’m not a carrier of the gene. but I say bullhonky!!
    My SPC is going really well! 3 years now, and I can attribute being comfortable to VESICARE, a neat little pill taken once a day to keep my bladder spasm’s calm! I can’t live without it! I was constantly on Antibiotics that seemed to be doing nothing! But I was on them for nothing, as it wasn’t UTI’s after all! There’s another pill you take 3 time’s a day, their on the PBS, so they’re a lot cheaper, especially if your on a Health Care card or Pension. I pay $55 a month, one a day, and Im happy!! So, if your having spasm’s, consider these, also what your eating and drinking!!! Our bladders are irritated, and foods containing acid,or vitamin C will irritate the hell out of the bladder wall and can cause bleeding if consumed too much! …. avoid, Oranges & Lemons, Limes, tomato, mayonnaise, vinigar’s, pickles, mustards, anything with high acidity!! Limit Apples, pine apple, tomato products, capsicum, pepper, chilli, chocolate, cheese, & alcohol, especially wines and white spirits. I have researched physically over 3 years ( actually 16yrs since diagnosis of bladder cancer) that these products can cause severe irritation if consumed constantly! Good things to have are celery as its a natural anti inflamatory, and green vegies for vitamin c in moderation. Carbonated drinks like Coka cola are ok, or ginger beer, Beer or whiskey in moderation also. Its usually red, orange or yellow products that will spur on an attack of spasms if over indulged, and chocolate too funny enough! My GP and Urologist have agreed that food plays an important factor in how our bladder reacts to certain foods. Water is a good thing of course, but we don’t need to over do that either! The standard 6 to 8 glasses a day is all we need to hydrate. If your like me, and my bladder can only handle around a fill of 300-400 mil, at a time, and sometimes I can only expel between 150 – 300, then its best we don’t do anything to entice an over reacting bladder (spasm’s). So, try these tips for awhile, and see how you go. Cheers!! Gayle.

20. I’ve been a free flip flow tap for over a year now as well, wouldn’t have it any other way! Bag at night to sleep through. Wear jeans, shorts, no one knows I have one! Flying to the states soon, 14 hr trip, I’ll bag that one and stay seated and sleep it off.

21. Gayle,

    Glad to hear about the flip flow valve. I agree completely respectful to the theory behind the valve regardless of the type (there are many). To help maintain the function and size of the bladder is critical. The bladder after all is a muscle and should be treated as such. I am afraid that since the Foley has been around for so long and many many institutions simply pay little attention to “other factors” after a catheter is placed, that may be beneficial steps.

    May I inquire about a few clinical items? After allowing the bladder to fill totally and empty at the end of the drainage event with a valve do you ever encounter any pain and/or stinging? Further do you encounter any blood in the urine?

    Appreciate the input have a wonderful Sunday

    Greg

22. Thank you to everyone who has responded to my question of my husband recently getting a spc and not knowing what to wear, etc. Gayle Taylor may I ask if you are able bodied or paraplegic?

23. Dwar All,

    I having a SPC fitted in about 10 days time, I’ve had MS for over 20 years and I’m a full time wheelchair user, and because I’ve lost most of the use of my left arm/hand to help with self catherisation which I did for around 12 years I’m now going down the SPC route.

    Now over the last three months and despite different drugs, I’m totally bladder incontinent (bladder spasms), will the urine flow cease through the usual routine with a SPC fitted? as without warning, I leak quite a bit every hour and a half unless I get to the toilket first, in bed it’s terrible the hoist is not quick enough so I’m wearing pads.

    I’m also having bladder botox injections but after having botox injections before for my bad leg tremors which didn’t work I’m concerned it might be a waste.

    What is a good flip-flow valve for a person who has only one good hand and a very limited second one, as I’d still like to control when I go to the toilet so to speak during the day?

    Thanks very much for any answers,

    Kevin aged 45

24. Hi, when I have my SPC changed by the district nurses and when I’ve had it done by doctors there is always a problem of it getting **stuck**. It seems to come so far and then it won’t come anymore and the pain is unreal. The district nurses won’t pull on it as the pain is too bad but the doctors in the hospital just yank it out when it gets to the point of being stuck. I was just wondering if anyone else has this problem and how the overcome it. I don’t really know what’s going on as I always get told its stuck. If anyone has any ideas as to why it’s stuck I would be more than grateful for your opinion.

    Thank you

25. I sometimes get blood clots in the bag, I think my SPC gets pulled during the transfers from bed to chair and vise versa. Then I get blood in urine until I flush it out by drinking a lot of water. Does any one else get this and what can I do about it?

26. There is a new suprapubic catheterization technique with the T-SPeC device. This technique utilizes a streamlined procedure addressing most patient types: no comorbidity, neurogenic bladder patients, obese patients, and, an alternative to open cystostomy. The T-SPeC technique of placing an SP catheter reduces complications to 1.6% by performing the technique from inside the bladder, utilizing the anatomy for reliable location of correct SP tube placement, as compared to the percutaneous punch technique blindly placed from outside to in with a complication rate of 29%.

    For more information on T-SPeC consult your urologist.

27. The main issue with this procedure/device has been the level of cost against reimbursed amount. Been some time since I spoke with the company however.

    Unfortunately unless they have gained their own coding reluctance at the hospital level will prevail. Many on this forum perhaps do not understand how hospitals receives dollars for various procedures, but generally each specific procedure has a aggregate amount split between technical and professional fees tech for the hospital and prof for the docs.

    Sad but if the cost of a procedure due to increase equipment is above the stated fee then difficult to gain traction. Unless there are very compelling clinicals. However more and more patients are beginning to ask by name for particular products. if you want this product then by all means you should ask for it by name!

28. Hi. I have had a SPC for 4 yrs and for the past 18 months have used a flip valve, rather then a plug. I am pretty active and a plug would occasionally come our. It did not happen too often, but there is never a “good” time. The valve works much better, has never come out & you don’t have to worry about dropping it. I am lucky in that I have never had to attach a bag, even at night. I try to empty regularly (every 3-4 hrs), but if I don’t I am reminded when I get the urge to go. I never have any pain when I empty completely, occasionally I will get a little “twinge” at the end of my penis just as I finish. I have never had blood in my urine.
    Hope this helps.

29. Hello,
    I have heard of meditronic bladder stimulator. Is it helpful? Has any one used it. Will it be a good option? Many thanks.

30. Hi… First I would like to thank the person that create this site…

    Recently, I was told that I will be needing a SPC for about two months. My doctor is going to reconstruct my urethra and she wants it to “rest” for two months prior to the surgery.

    I have gone through a long oddessy regarding my urethra… beginning with a bike accident at age 8… through lots of dilations and one botch surgery to having my uretha shutting down completely in March only to start back up again seven hours later… and always being terrified that I was going to end up with a tube coming out of my belly…

    So finding this site has reduce my fears by at least half… I am sure that once I have it installed I will have lots of questions…

    Again thanks…

31. Robert,

    I am sure everything will turn out fine. Good luck you may want to ask your urologist if utilizing a catheter valve would be ok. This will allow your bladder to cycle while on constant drainage. Think what your arm might look like if you did not use it for 2 months. The catheter valve can assist with maintaining bladder tone and patency.

    Take Care
    Greg

32. Les,

    Help please! You said that you attach your night bag to the output valve of your leg bag, but for me it seems impossible to do! I use a bard leg bag that has a hard plastic flip-flow valve at the bottom, and my bard night bag has a hard plastic input. They are both the same diameter, so it’s impossible to fit one into the other.

    Can you please tell me exactly what you are using that lets you attach the night bag to the leg bag?

    Thank you!

33. Hi

    I have had a Supra Pubic Catheter for two years and because of continued bladder infections, I am now going to have SPC removed & go back to Self Catheterisation. However, the doctor has told me that the sight where the SPC goes into the bladder may not close, simply because it has be opened for two years. Has anyone faced this problem whereby the SPC is removed & the sight does not close without an operation to close it. I always thought that the sight would close very quickly without any intervention by the Doctor.
    Thank you so much.
    Wilma

34. Hi Wilma, you are correct, after two years without any major issue, if the old supra pubic catheter site does not close within a few days to a week naturally, something is wrong, like infection. Any decent doctor/hospital will test for UTI and site infections prior to removal/repositioning as these can vastly complicate the otherwise simple procedure. After 12 years my supra pubic catheter required repositioning. Clear of infection it was performed in hospital under a general anesthetic. The old site was simply covered with a dressing. It took 4 days to stop leaking urine, 3 weeks to stop weeping, and 8 weeks to fully heal over. The day after my operation my suggestion of a stitch to aid healing and reduce scar size was brushed aside by the surgeon. I have always used a 16 fr silicone foley catheter. For any size catheter I still suggest asking about a stitch to aid healing.

35. Hi Graham

    Thank you so much for your information I do appreciate your reply. Yes , the Doctor here did say they may have to stitch the sight of the SPC if it doesn’t stop leaking. I have surgery due on the 15th July for the reversal of my Stoma, the Doctors are going to close the Stoma, however, I have to be infection free prior to this surgery which is understandable, so here’s hoping that there is no infection & my surgery goes ahead.

    Thank you Graham
    Wilma

36. Hi Graham

    Sorry should have mentioned that I have an Ilieostomy & they are doing the reversal for this on 15th July.

    Thank you Graham
    Wilma

37. Love your website dude! I think you go through so much detail in “regular speak”, that I’m almost tempted to print it out and highlight some of the parts for my new primary care doctor who thinks that it’s silly to have a UTI every two or three months. Or I’m crazy if I send in a urine culture that has sentiment or “floaties”.

    There are lots of new, and better options from the old days of of oxybutynin, and it’s nice to see I’m not the only one that’s gone through periods where they have to change it more frequently than once a month. I still have mixed feelings about the Uribel or Urex but I know people that it works for and I’m happy for them.

    My main question, 17 years later this July, is which kind of catheter do most people here prefer? I’ve done everything from pure silicon, to the fancy silver coated, the silicone coated latex, the hydrogel coated, etc. etc.

    What I have noticed recently in some Bard products is that 9 or 10 mL of saline is put in, but within 10 days only 6 mL are left. Or by the end of the month I’m under five. Sometimes what I feel might be a bladder infection (or at least does create a lot of irritation and sediment which can cause a UTI) is due to placement. Not having the catheter anchored if you will. At a C-4, C-5 level I can move quite a bit in that movement can create some painful positioning issues.

    So I have a 24 French, 5 to 10 mL balloon.

    Is there a particular brand or type of catheter that people on here are swear by? I’m tired of playing the trial and error game to avoid UTIs. There was a time where I would have one a month, another time only once a year. I know technology has come a long way as well as research in the last 17 years.
    I have never done the irrigation or flushing, as I’m afraid that that might introduce bacteria in a unsterile environment, but besides using normal saline is there any other product that you use monthly to help reduce the recurrence of UTIs?

    Thanks man and everybody keep rolling!

38. Kyle
    I’m the care giver, and the UTI’s bother me probably more than my wife. We probably were averaging one UTI every six months. haven’t had one probably for a year and half. what we are doing at present is Methenamine mandate late at 1GM twice daily also an OTC called Ellura 1 time a day. It was the addition of the Ellura that seemed to stop most of the UTI problem. We also push the liquids. I like to see at least 2 liters in the bag per 24 hours, more if possible. We also flush with Renacidin twice a day, but that is just for calcium build up. We are doing cath changes every three weeks, but this can vary. The wife is called Mrs. sand and gravel.

39. Kyle,

    Here’s my 2 cents on catheters. I have no latex reactions, so I use the Bard 5-10ml balloon. They are under $2 and work as well as anything else. I change it myself every 3 weeks. My wife hands me things as I need them. I had some failures with other catheters in the 4th week, so I shortened the schedule.

40. kyle
    Hi i been using spc for going on 5 years i went the first 4 years with no problems i am a brain injury 34 years old i got shot 13 times twice in the head i’m bed bound but i had problems with it clogging so i had my nurse go up one size om my catheter i use an 18 f 10 but its a 3 way catheter that way if i start to have a problem my mom can flush it with out having to open the tube the three way catheter has worked for me like i said brain injury so i still feel everything

41. Hi Bill,

    I use Conveen leg bags (Colorplast) and they are 800 ml bags. The night bag I use is a Simpla 2 litre bag (also Colorplast). It can be a little difficult to connect them, but even with my limited grip I can do it so they stay safely connected during the night. It really does make a huge difference to getting some sleep, so pursue your pharmacist.

    Good luck.

    Les

42. Robert
    We have a clogging problem as well, the thing that helps a little is to cut out as many foods with high OXALATE content. You can look them up on the internet. I find that it is impossible to eliminate all oxalate, but we just try for the high one’s. It has helped.

43. I got diagnosed with Corectal cancer two years ago. I now have a supra pub catheter. The bladder spasms are terrible. My Dr. has me on an antibiotic. Any suggestions to stop the Spasms. The Detrol and the oxybuiynin do not work. The plan is to reverse my osteomy and supra pub. We are changing the cath about once a week. I will not have a spasm for three days. Then they start. Last for a day or two. Then a day or so after the tube change.

    Thank-you
    Kevin

44. I haven’t even had time to read through all the posts & I am already excited to find this site! I had Transverse Myelitis 5 years ago & have been left with both an overactive bladder (Rx solves this) & a bladder that retains. We use a suprapubic foley catheter with no bag for this. I use a plug rather than a hose & bag which lets me lead a pretty “normal” life. This works well until the plug begins to not stay “plugged” & pops out. I’m seeing a “valve” mentioned in several of the posts — do I have an option I’m not aware of? Thank you for any info available.

45. I have an obese man with aSP cath,, almost 12 months,,no problems, lately has had more leaking , so urologist ok to go to 18f with 30 cc balloon..from a 16f/30…I have been having difficulties with it going straight in last 2 visits, some bleeding last time, this time with the new size, I couldnt get it is, it was NOT bleeding profusely, but bled a small amount of bright red blood, took 3 attempts to get in and then ok,,,still bled.. I laid him flat and pushed his pannis up with my left arm and finally got it in with my sterile R hand…MY QUESTION …how do I line it up for a straight shot in? I think I got \]-= between the badder and the abdominal wall , what should I look for ? will this heal on own, should he go to the urologist?

46. Hello everyone. After 2 yrs with spc my urologist suggested I start clamping off my cath to let my bladder fill, eventually building up to getting through ther night with a clamped bladder. He said this was appropriate spc managment. I have MS and have no feeling or sense of control of my pelvic floor muscles. I tried clamping off several times and as expected, the urine just bypassed the spc. Also at night I usually drain 2 litres. So hard to imagine this working. Any comments or advice? He is a super pleasant doc but way too busy.

47. Bill, I use a leg bag during the day and connect a night bag directly to my leg bag. I cut the hard plastic nozzle off the end of the tubing on the overnight bag, leaving just a clear plastic tube. I jimmy this clear tube over the hard plastic valve end of my leg bag. It takes a bit of work the first few times, but even a very small bit of tubing will hold on the hard plastic valve. When the clear tubing is in place I open the leg valve. I think hospitals have a gizmo that does this but I haven’t tracked one dowqn yet. Hope this is helpful.

48. Hi. I am a paraplegic for 15 yrs now. At first I self catheterised and over time my bladder got weeker. The last few years I have been using the permanent catheters with baloon and leg bags attached. Being a female and sitting all the time this is very uncomfortable and can be painful. I now have a cyst in the area where the catheter goes. I am researching supra pubic catheters and have spoken to my sergeon. My only concern or question I need to know is… When the supra pubic catheter is inserted is there any leakage from the normal way where I have been using catheters now. Does this stay closed and the supra pubic one takes over.
    Thanks for your site. It was really helpfull and hope to get a reply soon.
    Also if there are any females out there who have a supra pubic catheter I would love to hear about your experience.
    Regards Shaz

49. Shaz,
    lf you scroll back to February 11th – there is a post from me explaining how l manage my SPC – and l have had mine 19yrs.
    l hope it helps you – any questions just ask.
    All the best
    Trampergirl

50. I wanted to address Misspies and Amy comments.

    Amy mentions a plug popping out and a valve. If you would google search
    Catheter value and hit images in your search you will find several great
    options. The value is first for convenience but also allowing your
    bladder maintain it’s holding capacity.

    Misspies I understand what your uro is attempting to accomplish, that of
    more bladder volume. Since the bladder has amazing ability to expand
    after a long time what he is attempting may take some real training on your part.
    Like a mucsle being worked out small steps are advised. Start by utilizing
    stop watch and clamp off by plug or valve (recommended) and begin around
    30 mins drain repete and see if over time (months) you are able to increase volume levels.

    Take care have a nice weekend
    Greg

51. Hi Tampergirl,

    I read your post dated 11th February. My question was when you have a SPC inserted do you get any leakage from the uretha or does the SPC take ove and you get no leakage.

    Thanks Shaz

52. Short FYI from the 2014 American Urological Association (AUA).

    ORLANDO — Symptoms of neurogenic bladder improved significantly following a single treatment with a liposomal formulation of onabotulinumtoxinA (Botox), a small randomized trial showed.

    Patients who received intravesical liposomal onabotulinumtoxinA averaged almost five fewer micturition events per day 4 weeks after treatment. Patients randomized to placebo had no significant change in micturition frequency, reported Michael Chancellor, MD, of Oakland University’s William Beaumont School of Medicine in Royal Oak, Mich., and colleagues.

    Here is the link if anyone would like to read the entire study…

    http://www.medpagetoday.com/MeetingCoverage/AUA/45832?utm_source=cardio-meetings&utm_medium=email&utm_content=mpt&utm_campaign=DCH

    Thanks
    Greg

53. I have the catheter in pubic area only been 2 and half weeks when will the pain stop around it

54. You may have a little scaling round the wound, which can be removed by your urologist.

55. Hi Shaz,

    To answer your question – I only leak from the urethra / normal route when my spc is blocked and I’m bypassing. I have limited sensation and get a few minutes warning before this happens so I can generally do something about the blockage to clear it and prevent the bypassing. This is only my experience and I don’t know what other people go through. Any other questions, just ask away!

    Fiona

56. Greg, I just had a second botox treatment in clinic at the VA SCI unit. I was scared the first time because I have full sensation and muscle spasms. You want to be very still during the procedure. It was tolerable and cool to watch on the monitor. Doing the treatments in clinic rather than the OR I am able to go every six months. I take my as needed morphine and an extra muscle relaxer prior to and deep slow breathing, the payoff is awesome. I enjoy almost six months without debilitating bladder spasms, tube changes are quick and almost painless. I read the link you provided and that protocol works for me. The wait is to long to schedule day surgery for botox where I am, about 12-18 months. About half an hour of gutting it out is worth it to me. I don’t know if other places have the option for botox in clinic but I am glad it is available for me. Thanks for the link.
    Laurie

57. Laurie,

    That is wonderful while nothing is perfect it sounds as though benefits out weigh the hassles…

    Have a great weekend to you and all on this site!!!

    Greg

58. Hi,

    I have been diagnosed with a kidney stone and in a couple of weeks I am going to have it treated with lithotripsy, which is supposed to shatter the stone and enable it to be passed in the urine. Has anybody experienced this and if so, can they tell me about it?

    thanks,

    Les

59. Hi.

    I have had my SPC insitu for over 3 years now. I had it popped in due to severe retention (when I was first catheterised they took nearly 3 lts out of me!!!). I have had numerous minor niggles over the years but, when I was given a flipflow valve as opposed to the leg bags I was using at the time, they made the world of difference. They offer unparalled freedom as compared to bulky leg bags.

    The docs have tried various options to fix my problem from self-catheterising ( which failed miserably as I passed out everytime I tried it due to the extreme pain and some form of nervous reaction)to sacral verve simulation which did nothing at all.

    My main problem is that I suffer from quite severe depression as well, partly exaserbated by my medical condition, which means I struggle to keep up with a routine of getting my catheter changed. This means I have had quite a few infections requiing some heavy duty anti-biotics to shift um. My urologist has not been in touch for well over a year and seemed to have no answers the last time I saw him anyway as to any future progression besides the ill-fated self catheterisationand sacral nerve stimulation so I kind of think I’m stuck with my 2nd old fella down there lol.

    During the years I have used Bard stuff with no issues at all really. I’m lucky that I haven’t had the spasms others have suffered from as of yet.

60. Hello,
    I have found out about Queens bladder stimulator has anyone used it. I found it online it is a machine used when one has to pass urine. Many thanks

61. If considering a Suprapubic Catheter, request information from your urologist on T-SPeC. A simplified cystostomy technique for placement utilizing a larger size 18f catheter for better drainage.

62. Hello,

    Thank you Ya for mentioning about the Queens Bladder stimulator, as I had never heard of it, after reading about it I was really interested in purchasing this machine, therefore, I contacted the company who sells them, I have placed the order so I will let you know how the machine is once I have tried it a few times. Hopefully it does help with the urinary retention.

63. I’ve had my catheter for 10 years.on August 8th I will have an SPC put in.my question is this when they pull out my catheter and put in the SPC will I leak urine through my penis?or can the doctor plug it someway so I will not leak?

64. I’ve only dealt with SPC in my wife, and if the catheter becomes plugged for some reason, then the urine will find a way out, either by leaking around the catheter itself, or out the urethra, which with you would be the penis. If leakage does occur, they make male pads. we use Depends full time, as we have a problem with plugging due to calcium. Go back thru all the posts on this site and you will probably find more information.

65. Hi Alan… you can leak through the penis with a SPC.

    I have only had mine for 5 weeks and will be getting it out next week… during the first couple I had bladder spasms… when I spasmed a bunch of urine squirted out. I am taking an anti-spasm med.

    I believe I have read where it is possible to have the sphincter from the bladder to the urethra stitched up… but this might me hearsay, so I would talk with your doctor.

    Good luck

66. Hi there,
    So glad I found your site as I have a SPC which was inserted for a neurogenic bladder,(following a long term back injury)about 2 months ago. Initially following the cystoscopy, I had a month or so of UTI’s & haematuria, casts, & lots of spams. I’ve not done well & have asked my Urologist about having it removed because it’s so uncomfortable. Sorry for the description ahead of time, but the only way I can describe the sensation is that it feels like I’m sitting on “shards of glass”. At night it wakes me up with similar discomfort. There is also still occasional flow the old way & sometimes flooding. Does anyone else have this problem & is there anything that can be done about it? My Urologist just keeps telling me things will settle & I should give it more time. He says I wouldn’t want to go back to permanent incontinence. No I certainly would not, but, this pain is disconcerting & exhausting & I’m not enjoying life at the moment. Also, I’ve read that you can’t plug a SPC when it is used for neurogenic bladder as it may set up the autonomic response which can be life-threatening. So, how else can one go swimming with a SPC? Something I thoroughly enjoyed before all this. I look forward to having your feed back.

67. Alan,

    I had a catheter in before my spc, but only for about 4 weeks ( which I thought was long enough). My urethra continued to close after various procedures to open it due to the radioactive seeds I had for prostate cancer. I had about 3-4 weeks of a real challenge with the urethra still open and at the same time healing from the spc installation. Then the urethra closed and the surgery healed and the situation got a whole lot better.

    I’m thinking that if you have had a permanent catheter for that long, there is some real possibility of the urethra closing pretty quickly.

68. Marie,

    I wanted to address the catheter situation with you. I do not advertise on this site because the moderator has been gracious enough to allow me to continue to offer my opinion as it relates to various catheter related situations.

    The matter of autonomic and swimming. If you are empty prior to going for a swim there should not be an issue. Unless however you are planning on swimming for better than an HR. I would test your urine making rate ie we generally make 1CC of urine per minute give or take. This is where it can get a tricky hence the need to test. Normally a bladder has little issue with as much as 400cc. We had a failed bladder scan in a patient last week where upon inserting a Duette catheter he had 1000cc. So much for the reliability of bladder scans.

    The issue becomes one of YOUR bladder’s capacity. After on a indwelling catheter for long periods of time the bladder can atrophy. So perhaps utilizing a plug for small amounts of time you can better identify YOUR own urine making rate and bladder capacity. The rate will vary but you should be able to get a sense.

    Regarding all the catheter related issues you and others experience.. is why we developed the Duette product. This is where I have to be careful and not promote!!!! But please do me a favor and google indwelling catheters and then hit the image button so pictures come up. You will quickly see many images of Foley catheters in bladders. The issue is every pictures shows the bladder all distended like it is full of urine. If there is a catheter in place the bladder should be collapsed and be silhouetting the catheter. Tip rubbing on the done of the bladder… that is your pain when sitting down, bladder protective lining being aspirated into the catheter eyes… bladder spasma. Broken mucosal lining UTI bacteria and hematuria equal sepsis.

    Frankly the Foley is 75yrs old. Besides the fly swatter just about everything else has advanced in technology but the Foley.

    Hope this helps

    Greg

69. Greg, l would like to learn more about the Duette. l have had a SPC for 19yrs. Lost all control of bladder [and bowels] due to MS – which l have had for 32yrs. For the last year l have found the SPC getting more painful and uncomfortable. lt is on constant draining as l have nil control – so cant use a flipflow valve. After all these years – my bladder must resemble a wrinkly old deflated balloon. So the catheter [foley] does stick to the bladder wall – and quite often goes to far in and blocks the uretha.

    l would like to know if there is an alternative. l have asked my GP to refer me to the Sacral Neuro-modulation unit at hospital not far from me. They have assess to see if l am suitable for the treatment. lts a small implant in the buttock – that is programmed to control the sphincter muscles. From what l have read – it is easily reversible.
    But if their is a better alternative to the foley catheter l like to try it. l live in the UK.

70. Spasms and pain.

    I have a neurogenic bladder and happily use valves day time (including swimming) with a 2 litre bag added overnight. This works well for me – I have had my valve pop off on a couple of occasions over the past few years usually after some really bad spasms. When in hospital for a nasty infection I had a bag on day and night and ended up with constant spasms and more of that sitting on ‘shards of glass’ pain ( great description!) as my bladder shrank rapidly. Took a few weeks once back on to the valves to to get to reasonable volume.

    My older urologists attitude was it’ll get easier…..4 years later just the same pain. Newer younger urologist have suggested thinking about alternative surgery if it’s not getting better. I can’t self catheterise via my urethra. Currently having SPC changed under heavy sedation or light general anaesthetic as I get severe bladder spasms triggering abdominal spasms which trigger leg spasms. Not ideal but only option right now. Infections make it worse.

    Greg – great to read about alternatives to further surgery for some of us. In the end it’s about each of us finding the best solution we can for our own lives, not easy and pain & infection can really drag you down. This forum is a great resource and I pop back every few months for a while, it helps when
    I find SPC stuff getting tough to deal with.

71. Hello.
    Great site. I just had a SPC inserted because of restriction in the penis. I only had it in 24 hours and it got clogged. I went back to the urologist and they used a syringe to flush it out. It was a little painful but it worked. Now 24 hours later it is clogged up again. Is there anything I can do you clear the clog?

    Thanks again for the great site.

72. Hello, I am 76 years old and underwent back surgery in Nov. 2013. Shortly after the surgery I began retaining. The ER doctor sent me to the Oregon Urology Institute. I had a catheter until June 14th 2014 as they were waiting for my brace to be removed and for me to be able to bend, etc. They then performed a Urodynamics Study and said my muscles were no longer functioning. I also have a vaginal prolapse. They advise a total hysterectomy and to place the bladder in a sling to correct the prolapse. In the meantime I have been in touch with a Physical Therapist who has suggested I have a supra pubic catheter placed and then we would work from 6/10 weeks to train the pelvic floor muscles. My understanding, and I could be wrong, that I would go into the bathroom every 2/3 hours, and try to urinate. Then uncap the catheter and drain any residual into the toilet. All the while she would be working with me to train the bladder to function on its own. I would only wear a bag at night. Is this possible or will the catheter drain continually like the one I now have in my urethra, and I will always have to wear a bag day & night? I am at the point of having to make a decision regarding full surgery or the physical therapy approach.

    I just found this site and appreciate any input anyone can give.
    Margo

73. hi all yes another nasty infection I have had at least 5 this year up to now. Spent all night in a and e last night this time a site infection again.
    only had the same problem two weeks ago took antibotics for it. Now antibotics again two weeks later. I cant understand why I am getting so many. Hopefully in a few weeks time I can say bye to the catheter. They going to do a perment uriany divison an urostomy. No more painfull changes and tubes. I cant wait for this to happen.

74. Mike i use what is called 3 way catheter so that my mom can flush it with steral water it dose work i really hope that you figure it out i will keep you in my thoughts and prayers always

75. Hi Greg,
    Apologies for taking a while to say ‘thankyou’ for your comments on my problematic SPC. Have been down with a serious virus. I appreciate your assistance very much. I did Google the Duette catheter & it’s company & emailed their Representative. The website was incredibly informative & like you, they explained why I have these problems with my single balloon catheter. Unfortunately, & depressingly, I am unable to order the Duette as the company only has FDA approval & therefore cannot ship overseas until they are granted an Authority to do so by your Government. I live in Australia & there is definitely nothing like the double-balloon catheter here. I’ve spoken to our central Continence body but the nurses say they have not heard of the Duette. There are many products that the US has, that the rest of us need but cannot access. It’s surprising how many people don’t understand what the Foley does to the bladder wall nor what a ‘spasm’ really is. More education would not go astray.
    My Urologist has suggested further surgery – what I don’t know as yet – if my problems don’t settle. Seems that’s where I’m headed at the moment unless the Duette becomes available to us ‘Down Under”. You are fortunate to have this available to you. For now, it’s “shards of glass” & those painful wretched spasms. I fear them as I know the damage being done to the wall. Appreciate your help & will keep in touch. Good health to you all!

76. Maria,

    You are correct as unfortunate as it is until we apply for CE Mark outside US distribution is not available. It is not difficult to understand why so many MDs and patients do not understand what is occurring in the bladder though…For one unless you have a MD who genuinely cares to go the extra mile for better care; a good majority do not make the effort. Also the large companies do not care to bring change to the market unless forced to by competition (thats what Poiesis is trying to do). Lastly as you are aware if you google search catheters and bladders the images show a bladder full but truth the bladder is empty when a catheter is in place. If one understands this it is clear what the tip and drainage eyes are doing to the bladder innate defenses.

    Currently Poiesis is seeking additional investment to perform the needed task for outside US sales to take place. When required dollars are reached I will post to this site so all patients who require a catheter may have access.

    I would like to mention that out of the many sites available this one really does have very good information. Sorry if I am late in responding sometimes. Please feel free to ask questions, that is the only way to learn!!!

    Thanks
    Greg

77. Good news at last I am going have an urostomy in 8 weeks. No more pain, no more horrid and off the scale pain full cath changes. No more leaking from the urethra and no more soaked pads yay.

78. Hello,

    I do not usually ask for help through this site but I thought since more and more healthcare is beginning to move towards patient preference items/requests why not in this new World of connectivity (crowdsourcing, Facebook, Twitter etc etc). By the way if there is a super super Tweeter individual we want your help too!

    The way Poiesis Medical has been able to be successful is with results from individuals using catheters both inside and outside a hospital setting. This has been wonderful but still at the end of the day the product has to work.

    This is great news because a better safer product is available but also (in the US) we are taking cost out of the cost of care equation. So onward and upward… not so fast, unless a large company like Cardinal Health, CR Bard, Henry Schein, Hollister and Medline get behind the product innovation will be kept under cover.

    Generally catheters are looked at as a simple supply, also interesting to note most decision makers are only looking at dollars and do not have to utilize a catheter… if they did it perhaps would be a different outcome! Be this as it may the product value proposition saves dollars.

    So my reason for reaching out to this website, 1) I have enjoyed the passion and general environment where people help each other when they are able 2) I think we can make some noise and help bring a new innovation into the indwelling catheter market. You would think something would have changed over 75yrs since the Foley entered the market??

    I am asking for everyone when they feel its appropriate to express to there care provider and/or product suppliers mentioned above to demand change. Even if a DME like Liberator is supplying your product let them know you deserve better. Don’t let them say the product is not available it is (US ONLY)everywhere across the Country. Companies like Liberator have attempted to discourage patients from receiving the product saying it is not available, also Bayhealth in Florida has done the same shame on them all.

    For US only Poiesis’ pledge is the following split two ways A) a years supply for every individual who fights for change by letting supplier, caregivers, large companies, and anyone else who will listen about the new product. B) Pledge to the Craig Institute in Denver Colorado, of product for 1 year. The Craig is using the product now and I am sure would appreciate any help in caring for individuals who require this product.

    Thank you for the time and i hope this message was taken in the passion and empathy for which it was meant.

    Sincerely,
    Greg

79. My mom who has MS and lives in a nurseing home has one of these and since she’s had it for a bout 2 years or so she keeps getting UTI after UIT and they have put her in ICU . I’m glad most of you are doing well with yours.

80. I have had a SPC now for 5 years . I got it a year after i got shot the first year i was in a hospital and a nursing home but for the first year i had a regular catheter in my penis .I will never let them put a catheter in there again ,I had this nurse pulled it when she tripped over the line but it wouldn’t pull out because the balloon and when the nurse let the fluid out of she didn’t even have to pull on it , it shot out with a stream of blood but i had so many problem with regular catheter .So i went 6 months without one i wore briefs .Then when i figured most of my life is going to be in bed well all of it lol . So i decided to get SPC because my mom is the one that takes care of me and changing a brief every hour on a grown man will wear you out . i went 4 years without any problem changed it once a month then i got a UTI that put me in a suiezer and the past year i have had UTI and hospitalize 3 times i was having the nurse change it once a week

    Now i use 3 port so that my mom can flush the catheter without having to open the main port . It has been going okay my mom can take a sample in at any time and i got a standing order for antibiotics . All i drink is water cranbarry juice apple juice that’s it no soda nothing like that and i try to drink a lot so the seddmennt dont clog but most of the time it looks just like water in the line

81. Greg,
    Here in the UK – there are many of us waiting to be able to have the Duette catheter. l mentioned on the Multiple Sclerosis MSS forum the new catheter – and many SPC patients are desperate to be able to change to a Duette. l contacted my provider Wilkinsons Healthcare and the agency nurse – they have never heard of a Duette – but were very interested in it. l have got them to look at the youtube video – this gives them an idea why we with SPC foley cath have so much discomfort and constant UTI’s.
    l emailed the company Poiesis – and they replied straightaway. l do hope they get the go ahead to supply UK. ln the meantime, l shall spread the word that ‘help is at hand’.
    l shall certainly make waves – the more SPC patients that ask for a better designed catheter – ie The Duette – the better. lts time we were listened to. Trouble is – the urologists/ continence nurses etc do not understand the pain and discomfort we suffer.
    Can l suggest that you contact the MS-UK group who have a magazine called New Pathways – which is full of new ideas and info – and as nearly all MS sufferers have bladder issues you will have a captive audience.

82. I have had my catheters removed and had a sacram neuro stimulator implanted which is similar to a pacemaker but it sends the electrodes to my bladder and it is fantastic.. I was in full retention for years I could not urinate properly I also couldnt feel the urge to pee but now my life no longer revolves around procedures to fit supra pubic caths, leg bag caths, leg bag caths or constant uti’s or kidney infections. The SNS is also for incontinence so I tink everyone should look into this! My life seems bright for the first time in years!

83. Tramergirl,

    Thank you for the kind words and yes I will reach out
    to Pathways! Further and unfortunate as it is the Uros for the most
    part are not interested in something that can not produce
    additional revenues. Understood in these times of tight
    reimbursements.

    Perhaps the worse offenders are the medical companies and supply
    organizations. These control who does and doesn’t get products.
    CR Bard and Liberator Medical being the worse players. Niether has brought
    anything innovative to the markets but yet they control the end markets!!!

    We will continue the fight but any help is appreciated.

    Sincerely,
    Greg

84. Greg, What we need – in UK – is some samples of the Duette. l am positive that as soon as any patient tries one they will not want to return to the old fashioned foley.

    The customer is always right!!!

85. As a suprapubic catheter user, I got REALLY fed up with needing to cath in public (actually, also at home) so I DESIGNED my own unique catheter, which I’ve been personally using for over 3 years – my urologists have FINALLY come around and ENDORSED the idea (and design) – so I decided to SHARE IT – by putting it on the web (yes, it’s for sale – but nearly the cost it takes to MAKE IT). My “story” – of WHY and HOW – is also explained – so if anyone is interested – I’d love some initial feedback (only just got started on the web site adventure) – but I really HOPE it can help some people – with the same issues (an Indiana Pouch)!! http://www.easycathing.com

    thank you all

86. I have had the SPC 6 years now. Prior I had SILICONE and LATEX and now the new one 100% SILICONE LATEX FREE. The size is the same, but leaks on the sides of the SPC. Could this be from stones?

87. There might be a slight difference in the outer diameter (OD) where catheter and stoma meet. The specs on the OD of catheters are pretty open meaning manufactures have a lot of room for making some bigger and some smaller and still staying within the approved tolerances.

    Generally stomas will “heal down” in a fairly short amount of time. The question is if the new catheter has been in for only a day or perhaps two the stoma maybe still adjusting to the possible new catheter size.

    A 20F by spec can actually be a 22F (even a 23F if there was a size) and still be within tolerance.

    Hope I understood your questions correctly. I believe if it were stones you would feel it and possibly see hematuria in the tubing.

    Thanks
    Greg

88. Two thougths on that. I used one 100% silicone catheter for about a day and the material was a lot stiffer than the latex I had been using. I don’t know if that rigidity plays into the seal around the stoma? I couldn’t get the thing to stay connected to my collection systems, so I changed it and went back to the latex for that reason.

    At one time I was getting some leakage around the side of my 20 catheter and I went to a 22 and the problem stopped.

    Hope these help.

89. I had a SPC done about 3 months ago and I do love it! The only thing is I retained urine and then late in the afternoon I start flowing more often can hold 3-4 hours like the Urologist said. In the afternoon once I start I have to go every hour and sometimes I can’t hold with enought time to get the bottle, I do use the plug. I tried the EZ Flow but that was not working I think there must have been a manufacturer error. I live in the US where can I get the Flip Flo looks like a better product.

    I am a c6-7 incomplete and have very little use of my hands well it be to hard for me to managed myself?

90. great topic! I love this site very informative. I have one question where can I purchase the Flip Flo Valve?

91. This site is great. I am a post polio paraplegic and full time power chair user. I have not had the SPC long but have had infections all the time, and different types of infection, proved by urine samples. I’ve had continual pain and bladder spasm and can’t sleep because I feel very “busting” even though I am draining well. No one can sleep if you feel like you need the toilet.Also blood clots etc. but I drink lots of water and always have.
    I found Greg’s management piece very helpful. Also re acid foods. I have 40 ml. brandy each day as it greatly relaxes my muscles, but I do like beer, but what does fresh-brewed beer mean? Sorry I am not a bloke!! I am a getting-on-getting-older woman who had polio over 60 yrs. ago as a kid. I am using a flip flow which is ok because I have full feeling, but I was allergic to the bag straps as I have a latex allergy. Interested in all the comments about different bags you can tie round your waist etc. I just get what Nurse Maude provide and know of no other options. I feel rotten ever since I had the SPC and more scary I am due for FOUR major joint replacements in the next couple of years (elbows/knees) and infection is the worst thing possible for this.

92. Beginning in 2011 into 2012 UTIs on a monthly basis, determined cause , I was not completely emptying my bladder. Starting in 2013 through Feb 2014, self-catheterized four or five times daily no real problems, no UTI’s but blockage in the uretha began to make that procedure difficult. I had SPC put in in Mar 2014 and the first thirty days were blissful, no UTI’s, no overactive bladder, was able to get a full nights sleep. Then I had SPC changed in doctors office for the first time and everything went to pot. The next sixty days were torture, three UTI’s, blood in the urine, some blood from the penis and extreme pain in the penis when emptying the bladder through the SPC. Urologist explained blood was normal and the pain was caused by bladder spasms. I went to primary physician who prescribed anti-biotic for infection.

    Since June I have not had a UTI and the pain is still there but not all the time and only about half as bad. I visit doctors office every thirty days for SPC change.

    Questions: What is a bladder spasm an what does it feel like? What causes pain in the penis when I empty my bladder through the SPC?

    I have really enjoyed reading all the information on this site and have increased my knowledge tenfold re the use of the SPC.

93. Hi ALNM,
    How do you do! I read your comments with interest & can answer your questions. I have had a SPC since May this year & have not had a good experience. I can relate to some of your discomfort even though I am a female. Bladder spasms are not gender-related. They are,in fact, a sudden involuntary, often painful, squeezing of the bladder muscle without warning.
    The term is called, a “detrusor contraction”. It causes an urgent need to pass urine. The spasm can force urine from the bladder, with subsequent leaking. The condition is termed “urge incontinence” or “overactive bladder”. You don’t have to have a SPC to suffer these spasms.
    People who have had recent lower abdominal surgery, nerve or bladder muscle damage as in disease or injury, e.g., neurogenic bladder, UTI’s, recent pregnancy or menopause, sports injury, & the elderly, may experience bladder spasms.
    My spasms occur when my SPC empties the bladder & the catheter tip adheres to the bladder wall. When it releases the wall, the spasm occurs. I can actually feel & see the release happen, because there is a vibration down the catheter & then into the leg bag tubing. My medical staff always give me a quizzical look when I say this. But it’s a fact. In my case, I had a back injury with nerve damage through nursing, & the result was a neurogenic bladder. I suffered incontinence for 19 years until my Urologist decided on the SPC. Because the injury was in the lower spine it was physically impossible to self catheterise due to pain. I never had a spasm until the SPC was inserted. My bladder is “overactive” because the SPC irritates the bladder. My ER doctor confirmed this recently. I often wonder if a Duette catheter would help prevent this. Unfortunately, it’s unavailable to us in Australia.
    You asked “what does it feel like”? For me, it’s an intensely severe burning sensation. I had a hysterectomy & I felt the same burning in the lower abdomen when I first moved to sit up after the operation. I recently described it as “having your guts ripped out”. It’s that painful. The whole perineum & rectum is involved, causing incredible pain in this region. The burn is felt right through the urinary tract to the exterior. Ural sachets don’t help, nor does cranberry. My GP prescribed an anti spasmodic medication which I started taking twice daily & increased over a month, to four times a day(maximum dose allowed). It has been a blessing. I rarely have spasms now & the constant “by passing” of urine has all but ceased as well. For me spasms also occur when the SPC is changed. Some people described spasms as “cramps”. It sounds as though you are experiencing spasms when your SPC empties. Your doctor can verify this. As a community of people with SPC’s we need to be proactive & push for answers & assistance in every sphere. I hope this information has helped.

94. hi any one i am a maried man 36 year from mauritius .I had an SPC 6 years from now.last time i got my SPC change every 3weeks but now its 1week only.when I have my SPC changed by the district nurses and when I’ve had it done by doctors there is always a problem of it getting stuck.It seems to come so far and then it won’t come anymore and the pain is unreal. The district nurses won’t pull on it as the pain is too bad but the doctors in the hospital just yank it out when it gets to the point of being stuck. I was just wondering if anyone else has this problem and how the overcome it. I don’t really know what’s going on as I always get told its stuck..I was just wondering if anyone else has this problem and how the overcome it. I don’t really know what’s going on as I always get told its stuck. If anyone has any ideas as to why it’s stuck I would be more than grateful for your opinion.

95. Francois,

    Is it stuck because the balloon isn’t totally deflated? Have you seen it when it is removed?
    Is it adhering to the skin?
    Is your body trying to close the stoma so that a smaller size catheter would go through the opening better? I would think you wouldn’t want to get too small so that it continues to function, but maybe stepping down a size would reduce the trauma.

    I am not a medical expert, just another SPC user for 3 1/2 years.

96. Hello Francois,
    I have also had the problem where the catheter gets “stuck”. I can tell you that the bladder tissues are probably adhering to the catheter. This is extremely painful when you have to have the catheter changed. Also, some of the pain is likely due to bladder spasm which in itself, is exquisitely painful for some. Anti-spasmodic medication can reduce their severity.
    Care needs to be taken as the bladder wall can be damaged during catheter removal, & even pulled out with the catheter if not managed with care by the practitioner. There is a procedure that is followed in such events. My experience with a previous change was so painful the catheter could not be removed, so I needed an anaesthetic in the Emergency Department. There was a lot of debris, pain, & haematuria for the next few days & I needed antibiotic cover. Nurses will not change your catheter at home if you have a history of this problem because they don’t have emergency facilities in your home should something go amiss. This is not an uncommon problem & sometimes by turning the catheter each day between your fingers, while you are showering, can help prevent it. Not always though. Sometimes a type of residue forms around the catheter & the bladder wall seals around it. It’s just something some of us have to contend with & there isn’t much that can stop this. It’s the way our system reacts to the “foreign” body, that is, the catheter. Perhaps you can also suggest to the person doing the removal, that they “turn” the catheter to break the suction before trying to take it out. The suction on the bladder wall is very strong, & if not broken, can do damage to the wall. Hope this has helped you understand the process. I do sympathise with you.

97. Maria,
    Very interested in your post. l have had a SPC for 20yrs now – lost all control of bladder due to multiple sclerosis which l have had 32yrs. The SPC has been a god-send to me – but like you l get awful spasms caused by the catheter getting sucked into the bladder wall. l do give it a twist and turn daily and do have to be careful that it is not in too far as it can block the urethra. l imagine my bladder now is like an old wrinkly deflated balloon. l wish l could use a flip-flow valve so l could control the amount of urine in the bladder – instead of being on constant drain. l have tried the valve but just wet myself within minutes.
    Like you – l am also keen to try the Duette catheter – and so are lots of my friends on the MS Society UK. website who have SPCs. What anti-spasmodic med are you on and does it have side-effects. l use Sativex – which is a cannabis based spray that you use under your tongue. Luckilly, l get it prescribed by my GP on the NHS. lt does help with spasms/spasticity in my
    legs.

    l have asked my catheter provider about Duette – they say they have not heard of it – well they haven’t looked very hard! l would like to purchase some- even though l get mine free.

    Francois – You should not be having this problem with changing your catheter. As suggested perhaps you would be better coming down a size to see if it makes a difference. Also, check how much fluid they use to inflate the balloon – usually 10ml – and make-sure they take the time to ensure that 10ml is drawn out so that the balloon is completely deflated. Look and see if the tip is clean – not encrusted. Make sure that you regularly turn the catheter to keep it from getting embeded – and drink plenty of water before they change it. Have you tried using a flipflow valve – it does prevent the bladder from being constantly empty and depending on the reason you have a SPC – can be a good way of managing it.
    You can have a bag connected to the valve so that you can open it to drain at regular intervals if you cannot get to a toilet. Do you use lnstilagel to help dumb the site before they start taking it out – and then use some of it straight in the stoma before they insert the new catheter. Cathegell works the same.

    Hope you all find an answer to your problems – and Greg – let us know as soon as we can all try the Duette!!!!!!!!!!!!!!

98. Hey i’ve had a SPC for around 3 weeks which has been fine but for like last 4 nights it does not drain at all when i’m asleep and i have to flush it a lot when i wake up. Any idea what this could be?

99. Hi Francois,

    Besides the balloon perhaps not being totally deflated another possible candidate could be balloon cuffing. If you go to youtube and search for duette catheter there is a video that speaks to this issue with silicone catheter. Unfortunately current foley type catheter from Covidien, Bard, and Coloplast all tend to have cuffing issues. But with proper manufacturing this does not have to occur.

    To help with cuffing make sure that when removing the fluid from the balloon one allows the syringe to be pushed back from the pressure in the balloon. Remember you typically will not remove as much fluid as was originally put into the balloon. Important to not pull a vacuum on the balloon this will only make the ridges in the cuff worse.

    Gently pull back on the plunger and then let it relax, also try twisting the catheter as it is removed.

    I have heard a few events where the stoma does indeed attempt to close down on the catheter, making the next catheter difficult to get in.

    If you are using anything larger than a 20F its too big. 18F should be utilized when possible, unless you have lots of sediment. When a catheter blocks it is usually from mucosal sloughing cause by the damage of the catheter tip and aspiration of the bladder lining into the drainage eyes, thus most medical professional simply feel a bigger catheter makes this go away, it does for a short time only.

    Hope this helps
    Greg

100. Where is the flip flow valve sold?