Super Supra Pubic Catheters

1,776 thoughts on “Super Supra Pubic Catheters”

1. Alicia,

   I have used a little vaseline around the site to keep the catheters small movements from hanging up on anything. I hope it helps.

2. thanks when I see her i shall tell her that tip. she has ms not mobile anymore .
   Alicia

3. I am confused reading up on spcs and ureathal cath they have all said i should have regluar bladder washouts. I have had a ureathal cath since april 2012 and a spc since june. I have had the spc seince june but not one bladder washout. Do I need regular bladder washouts or not?
   alicia

4. I have had an spc since May, 2011 and haven’t had a bladder washout and neither the doctor who did my spc or my regular urologist has mentioned one.

5. My wife now has her SPC in place…and I’m really nervous about it coming out…I’m being super careful with all movements, but wondering if anyone has ever pulled one out..? I am just nervous and being paranoid..!

6. ALSO…is there a tube in her abdomen that the new catheter goes into, or does it just go into the abdomen hole…?

7. Mark,

   In order for the catheter to come out, a very large balloon in the bladder would have to deflate. The only way it will come out is if the balloon is deflated either by the medical person doing the cath change or if the water leaks out of it. I had a few leak, but even that’s not a huge deal. I put tape on the first one to hold it in place until I got to someone to change it. After that, my wife and I learned to do the change and always have an extra one around as well as a syringe. You will not pull it out just doing dressing changes or cleaning around the area.

   The tube coming out of her abdomen is the catheter. That will be replaced and go back into the hole in her abdomen at the change. As long as this happens within an hour of taking it out, it shouldn’t be a problem. Eventually the abdomen will heal up to a nice tidy hole around the catheter and life will be simpler for you than it has been for a while.

8. Hello Bill…thanks for the information…sounds great! Yeah…life has been complicated for a while, but a lot nicer now that we can SLEEP all night for the first time in 8 months! Thanks!!

9. I hear you on that, Mark. I hadn’t slept for longer than 1 1/2 hours for 3 years before my SPC.

10. Hi I am waiting to have one fitted. Planning to book a holiday to Cyprus. Flight from Manchester and back. Was worried about booking a holiday involving a flight.

    Janet

11. Janet,

    I have flown with an SPC with no problems. some have mentioned pressure variations causing bladder discomfort. I had no experinece with that. I would leave a little time for healing and getting used to it. I would also have a backup plan in case the balloon deflates ( as in someone who can help you replace it), but plan to enjoy your trip.

12. Hi,

    Anyone ever experience urine leaking from the SPC site and wetting your bed? What would cause this?

13. Never heard of this happening. The only thing I can think of is to have a larger gauge catheter or perhaps there is not enough water in the baloon.

14. Robert,

    Is the leakage occuring around the catheter? Would a larger catheter help?

    Is the connection between the catheter and the tubing to the bag leaking? I had a problem with that when I used a clear all silicone catheter. I changed quickly back to a silicone coated latex catheter and have had no further problems. I use a piece of cloth tape over the connection between the catheter and the tubing at night so that it dosen’t come loose while I move while sleeping.

15. Hi,

    My husband has a supra pubic catheter over a year now. On day one he still pee thru his penis. The doctor said it’s normal to leak but this is not leak it’s burst of urine most of the time. Even with thick pad and diaper he is still soak. That’s why he has rash in his groin. Please help me. Is it really normal? Thanks.

    Renee

16. Hi has anyone else had difficultys when their spc is changed. District nurse came to do my first change today. It came out fine but when she tried to put it back in she couldnt get it in. I ended up having to go into the urology ward in the hospital. They couldnt get the same size catheter in so had to go down a size. Has anyone else had experiences of this problem.
    Ann

17. Hello I am very surprised that you had your first spc changed by the dn. As far as I know the first spc change should/ must be done in hospital.I think that the done in about 6 to 8 weeks after they have fitted it. Mine first change in the hospital 7 weeks after having it fitted. Next time the dn came out to change it but could not remove it.So I now have all spc changes done in hospital. When you have it changed next time drink some water before the change and ask for the dn to use a numing gel before they put the new one in. Also you can take parcemol after the change. I find that it does help. I hope that this has been some help to you.

18. All my spc’s have been changed at my urologist’s office and usually by the physician’s assistant.

19. Robert, I have had leakage around the SPC site. It was caused by the catheter being in too far. It was against the urethra and the eyelets in the catheter were blocked. So there was nowhere for the urine to go. Doctor had put the catheter in too far. I occasionally have the catheter pull loose from the leg bag, creating a leak. I have to attach it further onto the leg bag.

    My urologist used to change my catheter. After my first urologist retired, my new one changed to the clear silicone catheter to prevent collapsing of the catheter. He also changed to monthly replacement instead of 8 -10 weeks. Then he suggested my wife do my changes, but do them every 2 weeks. There is less chance of sediment creating a difficult removal with a 2 week change. This has resulted in less problems.

20. l have had my SPC for about 18yrs. The first change was done at the hospital. After that l had the district nurses come to the house. There have been times when they have had difficulty in removing it – but now we stick to every 5weeks – no longer as then the catheter becomes a bit clogged and difficult to remove. lt is best to drink plenty of water just before the removal – and the use of lnstagell or Cathgel to numb the area and make it easier to put the new cath in. l only shower – l found if l did lie in a bath – especially with bath oils in the water it made the the catheter too slippery and the drainage bag would not stay on and it leaked. l often find by the fourth week l need to make a ‘washer’ out of the little connection tubes that come with the drainage bags – to stick onto the end of the catheter to wedge it onto the drainage bag. l do change the bag every 5days so l expect if l left the bag on longer the cath would not stretch and become loose. l have MS – and to stop my bladder going into spasm during the change l take a couple of sprays of Sativex [which l get on prescription from GP]The bladder is a big muscle and will spasm and make it difficult to insert a new cath. Especially if the cath being removed has caused some trauma. My district nurses are pretty good and get everything ready so that as soon as the cath is removed the new one is inserted straightaway. Occasionally l get a ‘new’ nurse who is not quite so adept. And sometimes l have had them push the new cath in too far and it is so painful afterwards and has actually blocked my uretha. So l then have to slowly pull it back by gradually turning and gently easing it back. Now l get them to check how far in the one that is being removed is as a guidance. After all these years – my bladder must be like an old deflated wrinkly balloon!!! So l get the nurse to gently insert the new cath and stop as soon as urine flows into the bag.

21. Dear Anne – what bad luck that your first catheter change was so darn dramatic! I really feel for you. Don’t worry though – things will get better.

    Depending on your medical condition – you may have had a bladder spasm which can make it very difficult for the new catheter to go in. There are some good anti-bladder spasm medications you can take prior to the catheter change.

    Take the advice from many here about drinking lots of water. before and after catheter change and for every day you have one. Its absolutely essential for your bladder to get rid of bacteria.

    Take daily cranberry tables. I use Herbs of Gold 60,000 Cranberry. It helps to smooth your bladder.

    Overtime, you will learn more about your own body and catheter changing moreso that than the nurses. And so, you may even feel the confidence to do your own SPC change if possible. Hang in there – you will be fine. Its always a bit tricky the first few months getting used to a SPC.
    Cheers
    Jane

22. HI
    thanks for the advice. I cannot have anything with cranberry in as I am on warfarin and have been told to avoid things with cranberry in. I am on oxybutin for bladder spasms and have had to increase the dose today as the spasms were quite bad after them finally getting a new catheter in. I have ms and have right sided weakness so I couldnt do the change myself. The incontinence team have rang this afternoon and asked me to attend clinic on 13th feb and they are going to try and put a size 16 back in.
    The drinking plenty of fluids is something I used to have problems with as I used to hardly drink however I have changed this and drink more now.
    I have found the spc a lot better than the urethal catheter. The bladder spasms are nowhere near as bad also if I fell out of my chair or off the bed I had a habit of pulling the urethal one out, However not had that problem with the spc.
    The dr at the hospital has put me on a course of antibiotics because 4 different people attempted to get the new catheter in before it was successful. I am discharging quite bad from the site but think thats because my inr level is quite high atm so its causing a bit more bleeding than it would have normally.
    I am glad I found this site as you have given me valuable advice.
    thanks
    ann

23. To Trampergirl
    I go into big spasms when supra cath being changed too. The nurses (and myself) found it so traumatic they now send 2 to do it. I take valium, ditrapam and balclofen 1 hr before change, but they dont make much difference, plus I’m drousy for rest of day. How long lasting is effects of Sativex? Some nights i eat some marijuana butter and it relaxes me for many hours (but keeps me awake). But i couldnt use it in the day because it saps my strength, can’t transfer, even hard to just sit in wheelchair.

    Also i go into ocean for swimm sometimes, but afterwards my bladder is irritable and blood n guck discharge from cath site. i wonder if the extra pressure of being in waves can force water thru stoma!

    This is very helpfull site, appreciate people’s comments.

24. The only time I had spasms after a tube change was when the urologist (not my regular one) was tugging on the catheter to make sure he got the right depth into the bladder.
    Most times the changes have been pretty simple. Actually, my wife and I have gotten pretty good at doing the changes ourselves. I understand that some of you are going through some different experiences, but I thought it would be useful for those reading the blog to know there are some who are having regular tube changes without this trauma.

25. Is there any Spc patients who has a Spc do to a bladder that has been scared or damaged by radiation Therapy?

    I am a 8 yr. surviver of prostate cancer, but left with a poor quality of life condition. Do to the radiation Therapy my male bladder has been stunk
    and harden to it’s full compacity of the size of a orange!

    That is the reason I have a SPC. Unpon urinating quight freguently,when to the ball of the catheter draws the urine out of my bladder there is a painful irration in the penis for about 7-10 minutes, B-4 it subsides
    .
    Does anyone have any suggestion for me as to how I can ease the pain more??? Thk U!

26. The Sailor & Trampergirl
    My first spc change was done by dn, no problems with next 2 changes. From 3rd change onwards nurse was unable to remove spc due to severe spasms which ‘held’ it in, medication of any kind made no difference whatsoever and I am on strong painkiller patches. I now have every spc catheter change done in hospital under very light general anaesthetic as it was the only way drs could get spasms to ease enough to change catheter. These spasms are painful. I was never advised to do washouts but had constant infections so decided to try my own version as antibiotic resistance was becoming a reality – since using Milton at ‘drinking water’ sterlising strength for washouts I have had almost no infections. Last dr who checked bladder condition said to keep doing whatever I was doing as it kept sediment down, kept infections including fungal away and my bladder was in much better condition than before. Just keep trying to find whatever works for you, eventually you’ll find it all settles down – I would never go back now to being without a catheter. Nights are sooo much shorter when you can sleep for more than an hour at a time.

27. i have a slight problem with my spc I am getting the urge to pee when i do i pass urine in the normal up 100ml. the cath is draining slowly but the urine is clear. I also have a yellow sticky discharge ozzing from the spc site and it very red and very sore and tender. I am using a cath valve at the moment i drain about 150ml every time. When i was using bags i was draining a full bag every two hours or so. I still had the urge to pee and had to go normally i passed about 20ml. What has gone wrong and where to i go to sort it. Do i ring the dn or see my gp or go back to the hospital where it was fitted. I am going to the hospital on the 6th feb to have a cath change . Any info or input on this please. I would so greatfull of any ideas on where to go next about this.
    thanks
    Alicia

28. Alicia. This is a no brainer. If I were you I would go to the Hospital at once. At least give the dn a call, she might sort it for you. Good luck.

29. BroBro,
    I have an SPC as a result of radiation therapy causing the prostate to close the urethra. They tried 3 procedures to open it and it would close again over the next several months. The SPC gives a whole lot better quality of life than I was experiencing between procedures.

    I am not sure what the problem is that is causing the irritation in the penis. I have minor sensations there when I have the occasional bladder spasm, but nothing like that.

30. It took 12 months before my spc settled down( had it 7 yrs now) My body still wants to reject the cath for a week after each change – i sweat, increased spasm, it feels like it is blocked, and it’s painful enough to make sleeping difficult. The urologist stretched the hole about a year ago and it was good for bout 2 months.
    A bloody pain it is. Sorry, havin a whinge!

31. Hi, I know that everyone is being given advice about just drinking water instead of going and getting an antibotic. I had been taking this advice for 3 months and kept feeling more ill. Turns out I had strep in my urine. If your urine is green in color, there is a good chance that this is your problem.

32. Cassie, drinking 3ltrs of water or any fluid/day is important for supra pubic catheter users, but nobody is saying it is a substitute for antibiotics. To expect drinking water to somehow magically turn green urine clear would be fool-hardy.

33. hi i had a suprapubic fitted on thursday as i am awaiting surgery for a urethral fistula caused by surgery to remove a urethral diverticula seem to be in a lot of pain where the cathater goes in my tummy and how long should i wait to go back to work.

34. Leakage around the SPC can be caused by taping the tubing to your leg.. Removed the tape, all is well, thanks all. Does anyone experience periodic blood clots in the urine?

35. Robert, ‘clot’ has a large sound to it. I frequently get bits of bloody
    tissue, usually after having to wrestle with my spc for one reason or another. These are very small but stick out a mile due to the colour.

36. Hi All, I was wandering if you use a valve, how often should it be changed and if they can be cleaned out and used again? The information I have been told and or read differs, would appreciate any opinions, Thanks in advance!

37. I get several UTI’s a year. I go in yearly for an ultrasound and a scope to look at m kidneys. My Doc has prescribed me a half-dozen prescription meds to try and curb my UTI’s but they have all failed. I drink aprox. a gallon of water from the time I wake up until I go to bed. Water is all I drink unless I go out for a few beers once a week. I change my SPC once, sometimes twice a month depending on my infection. Also after sex my SPC gets clogged and don’t know why or how. We try to flush it but distilled water can’t bust bust through the clogged tube. Will repeated infections cause my to get bladder or kidney cancer of some sort. I’m a C-4,5,6 Quad for 10 years this next July.

38. I’m having a suprapubic catheter inserted in a couple of weeks and I need opinions of those who actually use them. Super amount of practical information in this article. The only question I have is whether to use a valve or rely on a bag?

39. Hi Daveyy12, As long as you have decent hand function the logical answer would be to get both and see which you use most. Some plug a bag onto their valve leaving it open overnight to save getting up in the middle of the night.

40. Thanks, Graham. Your answer makes sense to me. Another dumb question: I know you can buy the bags because I do that now. Is a valve something you can buy and install yourself?

41. Hi,I had a spc fitted last August, first change done at Hosp.8wk changeover, since then have been done by dn, My questions are – 1.I get a feeling of needles pressing my vaginia, which are very painful.doc has put me on Urispas 200mg to try to ease it, works sometime. 2. On the last change,dn had trouble getting the catheter out,when they finally succeeded, the catheter had a bulge on the outside of it. They have now decided to change it 6weekly rather than 12. I am able bodied and on good days
    I can do housework and such as bending,stretching, lifting and such.could that have caused the problem with the bulge? Still very nervous about the whole thing.

42. Is the suprapubic bladder catheter considered a disability.

43. Daveyy12, yes they are only $2 to $20 odd dollars and plug onto a catheter or tube easily.

    Munchin, the bulge sounds as if the balloon was not fully deflated. Daily activity, houswork, or even strenuous excercise does not cause a catheter balloon to inflate or deflate. Next time you have it changed ask them to inflate and deflate the old catheter balloon so you can see how they work.

    Dpepper, no it is a condition not a disability.

44. Thank you Graham for the insight, by it being a condition and I’m a new comer to this situation I was also wondering your and others opinion on working 9-5 job with a SPC since its painful when I do minor work around the house which becomes more tolerable as you do it.But there is a nervousness that you will pull the SPC out. I’m a whs associate I do a lot of stocking and unloading, also driving a forklift and a delivery truck. Hopefully this situation will not be permanent just waiting on a referral to go see a specialist about getting a urethoplasty.

45. Dpepper,
    YOur spc may get less painful as time goes on. I didn’t pick up more than 10 lbs. for the first month, but gradually increased after that.I work as a surveyor, walking thru the woods, cutting line, carrying a 30 pound pack on my back and it works fine. The only time the spc came out had nothing to do with stress from work but just having the balloon deflate while I was sitting in the office. It just takes some getting used to.

46. Colin/Tas
    Hi Guys I have had the Spc catheter for 3yrs since becoming a complete T2/T3 paraplegic. I have found that being very anal about my care of the spc I have only had 1 blocked catheter and only 3 or 4 Uti’s so far. I use a size 20 Releen silicone catheter that I have changed every 10wks by a Community nurse. I clean my catheter daily by rubbing the tube between my fingers making sure I hold the base at my stomach firmly so it doesn’t spin. I tend to get a blood clot sometimes as long as the catheter after I do this but I don’t worry about it it generally only lasts a few minutes. I also put betadine around my spc site every morning then put a topper pad around my site and tape it down this soaks up any small seapages and stops your undies getting a bit of urine on them. I try and drink at least 2 litres of water a day and a couple of cans of beer helps keep my kidneys flushed. I generally put out about 1.5/2.0litres overnight but have done 4litres on a few occassions. I always use alcohol wipes when connecting my leg bag or overnight bottle. Don’t take shortcuts,prevention is the best cure.
    Goodluck all.

47. Colin/Tas,
    Doing what works to keep up with maintenance of your catheter is not anal. It’s wise. We are in this for the long haul and daily care is critical to good health. Keep it up.

48. I have had a {spc} for 4 years now and her lately i have been having alot of settlement and since i first read this yesterday i have been drinking nothing but water and i changed my catheter and i haven’t had any settlement since and before i was drinking alot of flavor water and i think the propel water was causing me to have alot of problems but thank you i learned alot

49. Urine infection etc.
    Bit of a heads up on my experience of “infections”

    I’m in England, I had a suprapubic catheter for 1 year from april 2011 – 2012 whilst waiting for surgery to open a urethral stricture near my bladder neck.

    It has been one year since I had the catheter removed. (april 2012)

    During my catheter time I went through many water phases. drinking 2-3 litres, in the summer of 2011 I was drinking 7 litres of water mainly per day with 5 litres urine output.

    This did not make the infected urine smell of fresh plastic and or ammonia/potent odour go away at all.

    Antibiotics (nitrofuarantoin) worked great for me last year (with catheter – 2 litres liquids per day due to catheter issues causing me massive liquid retention/bloating feeling but not in bladder.

    What I have learned about infections and antibiotics is this on 2 occasions.

    1) Smell and milkiness/cloudiness of urine if clearly not right/noticeable/unpleasant. dipstick urinalysis (siemens sg8/10) showed “infection” of high nitrites,leukocytes. Antiobiotics nitrofurantoin were given.
    I would say it is best to get urinalysis proper of the infection, to make sure correct antibiotic is given. (however, nitro cleared both occasions)

    Culture of the urine sample however, did not show growth, according to the consultant urologist appointment.
    However, the infection was probably catheter contained (encrustation and infection increased risks) they said.

    I had anti’s 1 month before catheter was taken out and it cleared me good from the foul odour/cloudy urine(plus crystals/encrustation evidence) to no odour, see through urine.

    catheter was taken out april 2012. october 2012 followup, dipstick and odour/transparency showed ALL showed no infection.

    I had the cloudiness and odour symptoms for a few months but my grand apathy meant I did not get antibiotics until last week march 2013. 8 days in my urine is back to normal from a stage of cloudy/odourous.

    However, dipstick did not show any infection, doctor didn’t mention that the culture analysis showed infection. However, this nitrofurantoin can clear my “non infection”.

    What doesn’t help me is my post void residual always lurking about 150-200ml.
    I am doing once a week dilatation of the urethra.

    So, with a catheter 7 litres per day didn’t clear infection, even though I was passing amounts of 500ml urine during 10 min timespans. (glug 1 litre water on an empty stomach in the morning – 45 mins later start of urine cascade 10 mins later, end of urine cascade)

    However, without a catheter and with the post void residal (normal urination) and with 2-3 litres liquids I still got an “non(infection)” eventually.

    Don’t be tempted to do this if you have known bloat/retention issues.

    STeady drinking is definitely the better way to go plus a catheter valve if possible and remember the citrates (citric acid) from lemons WILL increase your citrate levels which will decrease the potential of some types of encrustation. MAke sure however, you are not classed as a “blocker” because some stone composition is helped by excess citrates (yes.. you can’t win them all lol)

    Thanks to everyone who contributes to this epic thread on this very helpful site run by graham :)

50. some one help please. Why is when i use a cather valvle i get problems. When using the valve i get the urge to go, but cant open the vavle in time if this happens it will pass in the normal only about 70 to 100ml. i then can open the and i pass about the same amount from the valve. I want use the the valve for the long term. As It is more discreet and easier to use. How can i get to use use the valve with out leaking and getting the timming right. I am also leaking from the ureather when i am walking about takng the dogs ect. I then leak a lot and have use tena ladies underwear.
    thanks

51. My son has had a SPC for 20 years. He is paralyzed with a spinal cord tumor. The past few months the cath is leaking so bad at the site and through his penis, that we can’t contain it. His bed is wet every night, his clothes get wet when he is in his wheelchair. We have seen two urologists and they have been no help. He has been on Detrol LA for a few years, but I have never seen anything like what he is dealing with now. Apparently doctors don’t know how to stop it either. His skin is so red and irritated in his pubic area. Any advice? We are desperae!

52. I’ve had my SPC now for three years approximately and for the last three months, particularly the last two i am getting alot of increasing pain in my bladder. It washes me out. There has been no sign of above normal bacateria thus infection in all path tests. The doctors now reckon it may be bladder spasms. do bladder spasms hurt so much and leave you so washed out? At the moment, I’ve restarted taking my Oxytrol patches to alleviate spasm pain.

    What I am worried about is that i think my catheters (changed by allied health nurse in continence clinic) are faulty because there the amount of water in the balloon decreases to 6ml from 10ml and/or 8ml. At 6ml water in the balloon – is too small and ends up bouncing around in my bladder stabbing the poor inside walls.

    Tampergirl – or anyone – have you exprexienced this? Or could it be that I am perimenopausal? Or do you think it is Intestial Cycsitus – which alot of women get?

    My doctor is sending me to have pelvic imaging to identify any problems.

53. leg bags high or low? having now found out that i cant use a vavle. Due to leaking from from the normal route and not being able to open the valve quick enough then only draining about 150ml and bypassing most of the time 100ml at a time from the valve at the nmost. I have gone back to using leg bags. do any other spc users find this. When you wear the leg bag higher say thigh or knee you dont bypass so much. If i use the leg bag on the calf i bypass when moving about. The bypassing comes from the normal route but calms down when i wear the bag higher. Have any other users come across this before.
    thanks
    alicia

54. Alicia,
    Have you considered the belly bag? Doesn’t slosh like the leg bag. I use them most of the time and only an occasional leg bag to give the site a little break.

55. thanks bill for your input yes i think i will give the belly bag a try. I live in the uk. can you get get belly bags on prescription in the uk. I am with charther healthcare and get all my supplies from them
    kind regards
    alicia

56. Hi, I have a question for my father. He is a quad and he has a spc from last June. It has been less than a year now. For a first 2 month or so, he had a little bit of blood in his urine quite frequently when he was transferred or when his body was turned during the night. It seemed to settle down. About two months ago, it started again. It seems like a very small amount, sometimes little bit more. Is it usual to see the little bit of blood in the urine? Sometimes it is everyday and sometimes once in a while. Do we need to see a doctor? Thanks.

57. Is there anyone out there who can answer this question:
    I have been told by a new district nurses that I should change the flip-flow tap on my SPC on a regular basis e.g. once every two weeks. Not any of the other nurses has ever mentioned this. I have had my SPC now for more than six month and I have never changed the flip-flow in between catheter changes, which is every 5 weeks. I have never ever had any problems with my catheter(apart from a blocked catheter only once).
    What are your experiences as far as this is concerned.

58. Hi, really hope you can help me. My partner is a T12 paraplegic, absolutely no feeling from belly button down. We have a great sex life in our own fashion and my partner use to intermitent self catheterise, until this week when he had to go to the spinal unit and against his wishes had to have a suprapubic catheter fitted because of trauma causing problems with self catheterising.
    Obviously different parts of the body compensate when injury happens my partners chest and nipples are his most sensitive sexual part now but when aroused obviously his stomach contracts strongly. When he asked about the sex side of things,he was told by the surgeon that we could no longer do these activities because of the contractions which has obviously shocked me and left him feeling quite down and depressed. Surely there must be some way that even with a suprapubic catheter you can still have an active sex life as contractions are a normal part of arousal in love making.
    Really hoping you or someone can advise or shed some light on still having a healthy sexlife.
    Thanks Miriam

59. Hi Guys I’ve had my SPC for about a year now, some great info here, my question to you all is “have you ever heard of anyone going scuba diving with one fitted?

60. Alicia,
    l have posted before on here about how l wear my spc. l use a female short length cath – and connect to a 600ml direct valve bag – l get them from Manfred Sauer – they have a cotton-feel backing. l thread a lace through the slots on the side of the bag and tie it around my waist. My stretchy short style knicks hold it all neatly inside of my jeans. To empty l only need to undo top button and pull out the tap end – which is by my hip -to empty. l stay the same at night – no connecting to a night stand for me. lts worked this way for 18yrs.
    l find that the catheter balloon is best filled with glycerine. 10ml goes in and when its changed -every 5weeks – there is always 10ml to withdraw.
    l have been taking the D-Mannose supplement – and find it great for keeping the bladder healthy. l recommended it to a friend who had a succession of uti’s that no anti-biotic seemed to touch. Within a couple of days of D-Mannose she is feeling much better. Urine is clear and does not smell and the pain has gone. l am thrilled for her as she is about to fly to Tenerife to visit her son who lives there.
    Can’t see any reason why you cannot go scuba diving. Give it a go – and let us know how you get on. Don’t let anything stop you doing what you want. Life is too short for if’s and but’s.

61. Hi I am wondering if anyone can help me, I am a female aged 40, and 10 weeks ago i had a suprapubic catherter fitted as i was suffering from retention.
    Since coming out of hospital i have been in pain around the vagina area.
    It is worse when I lie down and sit upright, but it is ok when standing or walking.
    I am taking oral morphine for the pain, and to be honest i cannot take any more.
    In addition i have a flip/flow valve catherter, i find that when i am emptying my bladder the last bit of urine to come out, i get a severe stinging pain and it feels like something is jerking , or i get a shudder and It really hurts and i am in a lot of pain. Can someone please help me or give me some advise please

62. hi gill
    When I had my spc fitted i had the same problem. Have you had it changed yet. It may need changing. I was told that you have a bundle of triangle shaped nerves all connected to the bladder and this what courses the pain. You can try plugging your valve onto a leg drainage bag for a few days. let the urine drain freely this may help. Drink about 2 to3 lt of fluid per day. It may be a good idea to ring your dn you may need a bladder wash out. Also ask your gp to do a cath urine sample. You will have use a leg bag for this make sure that it has urine test point it usaually a color valve. you may have a water infection. spc are renowned for infections. Try to drink about 5ooml of cranberry juice per day. Also the pain you are getting could be bladder spams or cramps. Ask your gp for a anti spamsbotic oxbution detrol. or vesicare are good. It wil settle down with time .Mine as just about settled it took about 8 monthsto settle. let us know how you get on
    hugs
    Alicia

63. When emptying with a flipflow – it is best not to empty completely – leave some in – that will stop the sudden shudder and collapse of your bladder. lt is one big muscle and does contract and spasm. l remember when l first had my spc – l had pain as bad as contractions. Your GP can prescribe meds to prevent the bladder spasming. Make sure you get the cath changed regularly. l find every 5weeks works best for me. Also, avoid latex catheters as most people find their body wants to reject them. Drink lots of water – keep the urine diluted. And D-Mannose is great for bladder health. Since l have been taking it l notice that there is no sediment in the tube anymore – which must be a good sign. Even after 18yrs of a SPC – l am still learning. So try to guage it so you do not empty completely.
    Another thing – sometimes the catheter is inserted too far and it can rub or even block the uretha – and that is painful. When you next get it changed – make sure they insert it slowly and as soon as urine flows thats the time to stop and inflate the balloon. You can slowly turn the cath yourself and give it a little pull back to see if it feels more comfortable.
    Hope this helps.

64. Gill,

    In addition to Alicia and trampergirl comments and presuming that your problem is not a badly located catheter, then bladder wall suck could be a problem.
    The fact that the pain comes on when emptying, suggests, bladder wall suck is at least one of the problems. The resulting damage also takes time to heal and a raw bladder combined with increasd infection agitation is best not experienced.

    There was a time when I had a sp cath and a urethral cath (after surgery) due to stricture in the urethra. I waited a year for urethral surgery and I then had the sp cath blocked off and drain bag connected to urethral for one week. IT was then removed and I did a UK TWOC Trial without catheter, or it seems, I was not fully informed that trial without catheter means no catheter, not 1 catheter blocked off.
    Anyway, I was drinking like mad and getting massive surges of urine during my TWOC in hospital and I was emptying the flipflo valve to the point where I was shuddering inside in agony. I spent all day doing that, and in the nighttime I went back to legbag because I couldn’t handle it)
    However, it is known that in a percentage of bladders, bladder wall is sucked into the catheter eyelets. When this happens it is immensely painful as the bladder approaches “empty”. Once bladder wall is sucked, you will probably feel quite uncomfortable.

    I always felt that the best technique for me (and I reckon my bladder was mashed a lot over 12 years of urinating through eye of a needle (max urination was 3ml/sec plus backpressure plus chronic retention) is to wait until urge, if you get that, then depending on your trigger bladder volume, empty for a few seconds at full opening of the valve, then slow it down to empty slower. That way, you get a purge which keeps eyelets clear, but you also avoid/reduce bladder wall damage. If you have feeling, you can also stop the emptying when you feel a very slight pull inside. If you don’t have feeling, then maybe going

    This may leave you with urine retention maybe even 100ml.(just under half a cup volume) or more. LAst year I had 7 months of a 150-250ml post void residual, which I measure with catheterisation without any infection concerns due to large ish post void residual.

    There was a time last year when I was getting catheter changes and straight away I was blocked again. It was never diagnosed because they didn’t care enough to.

    One night was tortorous which become early morning and I had to have a catheter change. For 24 hours I basically didn’t move unless I had to because taking the catheter out (bard hydrogel at the time) was pretty painful but for her to get it back in was like she was pushing a needle into my bladder wall. 24 hours, didn’t really move….awful.
    6 months of awkard catheter, even from afresh.

    It was awfully traumatic even as a non-SCI’d becaues I couldn’t understand why I was unable to drink more than about 2litres per day without bloating and such weirdness at 2-3 am that I had to go to hospital.
    Useless response in the NHS. I dread to think what its like 1 year on. The average catheter patient with full feeling, has far more of an idea what works, what hurts etc. Now, I am practically doing the same thing but can drink 2-3 litres water in 5 hours no problem. I think I had mild hydronephrosis and permanent backlogging which was bloating the whole area and sort of occupying the bladder space. Anyway, no time for a novel here. Talk to some competent catheter professionals if you feel there is a consistent problem.

    My main worry is for those who don’t have bladder feeling, they can’t use the technique of sensing bladder wall suck. Those people are far more likely to get blood and bits and blocking in catheters and obviously most people that have long term catheters, have them due to nerve damaged reasons, not just strictures or other catheterisable issues.

    There is a new double balloon catheter out in the usa, which is meant to stop bladder wall suck. In the uk, however, where I am, I do not believe it is yet licenced, yet samples are being tried. If its silicone, I damn well would not want to have 2 ridged balloons (instead of normal one) that have not deflated fully and are therefore ridged.
    I used to have laughing gas before having silicone catheters removed from suprapubic tract last year. It was 5 seconds of starburst pain. I found out later that silicone is not indicated for suprapubic tract… but silicone has a wider bore so takes longer to block then coated latex caths.

    I am going to try d-mannose I think, because I am running a perma “infection”, but not to treatment levels or hazards (leading to kidney infection etc) My last urinalysis grew nothing from a smelly, opaque urine, go gigure… Must be my kidneys dissolving into the urine. :|

    Far too long a post really, but hope its educational somewhere.

65. Has anyone taken the prescription drug – Vesicare? It has been prescribed by my Urologist because I’ve had terrible bladder pain now for the last four months.

    What has been your experience?

    Any noteworthy side effects?

    Did it work for you?

    Kindest regards – JWTAS

66. Yes, I have been on Vesicare for almost 4 years, no problems, great help stops bladder spasms. Highly advise you use it. Take Care nothing to worry about.

67. Anything new out there to help me stop all these constant UTI’s?

68. i am on vesicare I have no side affects apart from a dry mouth. with me it dont stop the bypassing but slows it down. I prefere oxtibution. but the cons as said vesicare. One good thing is you only have to take once a day. With oxitbution you have to take it 3 times a days. I hope this helps
    and good luck

69. I have been on Trimethoprim once a day no UTIs for 4 years now. I keep Levaquin on hand just in case talk to your urologist.

70. Alicia, Trampergirl and Andy, i would like to thank you so so much for providing me with all your knowledge and information. I am so pleased i have come across this very helpful webpage. I have learnt more from this webite than my own hospital. THANKYOU!!!
    Since having my SPC fitted 10 weeks ago i have had 5 infections, re-admitted back into hospital with pain for 3 days( i could not walk) and i am still getting real bad pain which is been controlled with morphine. I have had some emergency scans ( CT scans) and i have an appointment to see my consultant on friday. I am on the verge of a nervous breakdown.i cry every day and really cannot take much more. I hope i get some answers on friday, and i hope my consultant can fix me. I will keep you posted.

71. Vesicare is a dream. I am so much better. Thank you everyone for the support.

72. Hi everyone, I was at the hospital on Friday to see my consultant, this was to discuss the severe pain i have been in for 10 weeks. It appears to be that when i sit down or lie down,the balloon from the catherter balloon pushes through the vagina wall and is causing severe pain. He deflated the balloon a little so it is not fully blown up and not catching on the bladder wall. This has helped a little bit over the weekend but it is still catching. Has anyone had any experience of this before??
    The consultant has given a couple of options to me.
    1) Try and get a indwelling catherter that does not have a balloon. has anyone tried one?
    2) If not then he might have to operate again and create a new site, for the catherter.
    3) Operation and give me a urinary diversion (stoma on my stomach wall).

    In addition i am getting really bad spasam when my bladder empties, i am taking oxybutynin 2.5mg i am taking 2 tablets per day, but this does not help much. Can someone please advise if i need a stronger dose, what is the maximum dose you can take?
    Does the spasm’s settle in time, as it is really bad?

    Thanks Gill13

73. For those of you out there with spcs and getting utis all the time. Here’s my formula.

    – Carefully shave or wax the entire genital area – waxing is better hair stays away longer.
    – Surround spc with clean or sterile gaze.
    – Shower every day
    – Use separate wash cloths avoid cross contamination. Color code white for face etc. yellow for genials, green for buttocks area. Never mix soap and rise a lot, avoid soap into spc hole.

    Hope this helps. KNOWLEGE IS POWER

74. can anyone tell me if botox injections into the bladder can stop really bad bladder spasms, which results in bad urearal bypassing lots. I am going though about anywhere from 7 to ten large pads per day. which are soaked every time i change them. I thought with a spc this would stop, but no it as not. If i dont have the cath i go into acute retention. Can anyone one help i am getting very upset and stressed about this.

75. Another thought.

    I read Robert’s list and the only thing on it that I do is shower. I soap up the area around the spc and make sure it is clean of all residue. I have been known to shave a little circle around the spc to keep hairs from getting caught in the little movements. I use no gauze or anything around the site. I have had no problems with uti’s. Drink lots of water.

76. I have had botox injected into my bladder for 6 years to try and overcome neurological problems, to start with it worked brilliantly, coupled with an oxybutinin patch no pads or catheters needed, as it wore off, pads had to be used. These days as my condition worsens and I am losing upper limb dexterity I am no longer able to manage the botox/pads route. Currently have a uretha catheter (and pain on sitting) but am due to have a suprapubic coupled with flipflo valve and botox in a few weeks. Thanks guys for this site, have learned so much.

77. Hi,

    I had an spc fitted just over 2 weeks ago because my body kept rejecting the urethral catheters with the balloon intact.

    Since I got my spc the catheter has come out by approx 1 and a half to 2 inches (it used to end above my knee and now it sits below the knee) and I’m really worried that my body is rejecting the spc in the same way. As well as the spc coming out a bit I’ve also had some new blood on the dressing and a pressure along with quite a lot of pain around the wound. I get the pressure and pain especially when I sit upright / forward in my wheelchair and during transfers.

    I have an infection in the wound which the district nurse is dressing. She has agreed that the spc has come out a bit and she suggested I contact the urology nurse as she’s not allowed to touch it until after the first change. The urology nurse said that the spc couldn’t move and that as long as it was draining, there was no blood and no new pain I wasn’t to worry. I have had some new blood and new pain so should I be worried?

    I really need some advice as to what I should do. Is it possible for the spc to be rejected and come out with the balloon intact like the urethral ones did? If so, how can I prevent it from happening? Who should I seek help from if it is coming out?

    Thanks,
    Fiona

78. Hi Fiona

    I had an spc fitted about 8 months ago so I understand where your coming from. Blood and some blood clots in the urine 2 weeks post op is totally normal. Remember they have cut a hole in your bladder and skin to have the catheter installed. It’s a wound that isn’t meant to totally heal so it’s going to bleed and seep a little. Eventually the scar tissue will biuld up and bleed alot less, nearly not at all. I found that it does subside after about 3 months but I do sometimes still see a little blood clot every now and then. I did used to wear a dressing on the site but as I shower every day I dont find it nescessary. Yes sometimes I do get a little seepage at the site but good hygiene practices for me is sufficient. Washing the site with antibacterial washes, detol wash etc works fine for me.

    As for the spc coming out don’t be paranoid it will come out. Unless it is ripped out with heavy force it will not come out! Again using good hygeine practices with clean hands hold the catheter at the entry site between thumb and forefinger and very gently pull it. Not hard but you can feel when the ballon of the cath is against your bladder wall. Im not saying feel it sensation wise as I dont have sensation. But you can feel its stuck in there and its not going anywhere. Also the extra length your finding with the cath is totally normal. Again you can gently push the cath in that couple of inches from when you know the balloon is up against your bladder wall. Its totally normal. I sometimes do it just to release any residual if it is there. then gently pull it back out that inch or two. I understand its a bit weird to start with and I used to be constantly worried about it too.

    To start with I had alot of bladder spasm (I am a C7 quad) and it is uncomfortable and caused me autonomic dysreflexia but that was because I had an underlying UTI. Once that was cleared and the cath settled down and my body got more used to it everything is easy and its been the best decision ive ever made regarding bladder care. I havent had an infection in close to six months. I used to get them constantly. The cath has never came out. Mind you it did block once which was interesting. But not a hard fix.

    Get your GP to test your urine. Make sure you dont have a uti. From my experience the pain from the cath does subside over time but if you have a uti that could be causing the pain too. As I said theyve cut holes into you to insert the spc. It causes some trauma to the body to start with so there will be some pain involved still after only 2 weeks. It will subside.

79. hi fiona yes I agree with Jason your spc was only fitted 2 weeks ago and it still early days. You have not told us what leg bags you use. Sometimes short leg bags help with post op discomfort. If you intend to use a catheter vavle wait until your first change,which should be done in hospital in about 6 to 8 weeks. To have some blood and clots is normal in early days. I still sometimes have small amounts of blood when they change the cath.I have some blood clots as well. For the pain take normal pain killers, and ask the gp for some meds for bladder spasms ie Oxbution or vesicare. Both are good, I was told to keep the dressing on the wound until it stopped weeping mine took at least 7 weeks to stop weeping and bleeding. I still find it weeps and bleeds sometimes, but i dont use any dressing now. I clean round the site twice a day with baby wipes.I have never had a site infection,or a uti drink at least 3lt of fluid per day. Please dont worry about the spc coming out it wont the ballon holds it and your site makes a tube like chanel round the tube to hold it. You may find at your next change they will put a bigger cath in say a 16ch. You will most likely have a 14ch now. The bigger one is more comfortable. If you are worried about anything contact your dn or your urorolgy nurse for advice. I hope this helps and i wish you good luck in your catheter learing curve.

80. what is a bladder wash out?

81. Jason and Alicia,

    Thank you both so much for your advice. You’ve done more to reassure me than either the district nurse or urology nurse did. I feel far less worried now and I’m very grateful.

    Alicia, I’ve been using leg bags which sit on my lower leg at my calf. I already have a 16 catheter but mine says 16Fr – what’s the difference between that and 16Ch? I don’t plan on using a valve as I don’t have a lot of sensation and I don’t think I’d know when to empty my bladder – that was the reason I needed the catheter in the first place, I was severely incontinent. I have neurological problems and a tumour in my neck at C2 which is pushing on my spinal cord.

    I do wish they’d given me more information about the spc and what I’m likely to experience before I’d left the hospital. All I was told was that they made an incision through my abdomen into my bladder and that they couldn’t guarantee that I would be dry afterwards. It would have been helpful to have an information leaflet and also a number to contact. Thank goodness I found this website and I’m able to ask people with real experience.

    Thanks again,

    Fiona

82. Fiona, l had my spc fitted 18yrs ago. And like you- was not told what to expect afterwards re care and maintanance. Over the years l have had to learn as l went along. l soon discovered that the long length of tubing and having a drainage bag of pee strapped to my leg was not for me. l soon adapted – and have a female length silicone cath – and a 600ml drainage bag that has a direct connector – no tubing. l use a cord/lace to tie the bag around my waist and it all tucks well inside my tight short style underwear. l can wear tight jeans/leggings/shorts without the bag showing. And l only have to open the top button to take out the tap end to empty. lts so easy. l keep to the same regime at bedtime as well.l prefer this way for my own self-esteem and comfort. No dragging of the weight of the bag on the cath site – or kinking of the tubes causing wetting urethally.
    l recently took part in a new online website from Oxford Uni – its called healthtalkonline – chronic illnesses ‘living with a indwelling catheter –
    Apart from this site – l have not found anything else. l took great pleasure in informing the new one that there already was the great Streetsie site. Healthtalkonline is in the UK. They actually videod me and you can see how l manage my SPC. l am in the over 65 group. Did not think l would get to this age and my only claim to fame would be undoing my flies. But the interviewer was intrigued about the way l wore my SPC – and knew that many other users would like to see it.
    l have never been back to see a urologist since the initial op-l only see a district nurse every 4/5 weeks.
    As time goes by you get braver and find you can cope with any problems. Do not let the nurse push the cath too far in – lt will block the uretha and cause discomfort. Over the years the bladder will shrink – like a deflated balloon with a SPC – so just insert the cath gently and slowly and once the urine starts to flow that is the time to inflate the balloon.
    l prefer the glycerine 10mls put in as it does stay inflated better.

83. Hi guys… I am desperate for help but no one is listening to me at the hospital. Its a cry for help now. My Pain is excruciating when sitting upright or lying down. The pain is excruciating when my urine drains into my bag..i get horrendous spasm pain. It has been 13 weeks and I cannot take any more. I am on the verge of a breakdown. I sm drinking morphine by the bottle to stop the pain. I am going to call the hospital tomorrow, and ask them to remove my spc.. but what will happen.??? Last week The have deflated the balloon on my catherter to stop it from rubbing on the bladder wall. I have been on Antibiotics for approx 10 weeks.and know this is not right. Can someone please please help.

84. hi josh A bladder wash out where the dn nurse or urologry personal. Takes your drainage bag of and then injects water or some saline into the bladder to wash out blood or clots or and debris or gunk in the bladder. This is usually done if the catheter blocks or is not draining. My experince is the dn do this if you have blood or any muck in the cath. My own dn has done this to unblock the cath but then had to send me to the cons to have if changed any way. hope this helps.
    Fiona i think that a 16fr and 16ch means the same mine says 16ch. I think that different makes have diffrent ways of sizing caths. I found the same as you when i had mine put in. No info no nothing I have learnt by trial and error. You will soon become conifdent and a pro in using a spc. Please ask your dn to enrole you in charter health care. Where you can get all your leg bags night bags ect sent to your door. They also have loads of freebies. I too find this site invalvable for info. Any way wellcome to the life of spc users. I am still learning I have to get used to having a spc because I have to have mine for the rest of my days. I cant pee any other way.

85. hi gill sorry to hear that you are in pain. Can you manage your bladder without the catheter. I cant i cant pee without mine. Is your cath blocked or in to far. This can give you a lot of pain if it is down in the waterpipe to far. Try a bladder wash out and have them move the cath a bit before you dicide to have it removed. I would hate you to go though what i did before i had the spc. it was horrid I could not pee i was in acute retention or i would get no warning and flood every where. I was wet though all the time.
    good luck

86. There seem to be a lot of catheter related casualties building up in here :(

    Gill,
    Unfortunately, I feel that there aren’t many options but to get that catheter out even temporarily, but the bladder/vagina fistula, it would be called, is not going to disappear without surgery unless its been a case of bladder wall rubbing damage, but I don’t know about that in women.

    If a criminal in police custody was left in pain this way, it would be a criminal offence. I can understand that, if there is really no option left and you are saturated with medications and all catheter options have been tested, but I don’t think that is the case, is it?

    I can see the complication here though with the bladder/vaginal “fistula” I wonder if its possible to get a catheter into your urethra somehow, as it will have a better positioning and will attack the top wall of the bladder and not the vagina wall. It’s not just bladder wall rub, it is pure suction into the eyelets and resultant blocking and dragging damage and pain during bladder refill.

    You didn’t mention if you are on constant drain or are flip flo-ing still?

    Urethral.
    http://www.urologyhealth.org/urology/articles/images/anatomy_Catheterization_Female.jpg

    Suprapubic
    http://www.shutterstock.com/pic-104046092/stock-vector-drawing-of-a-catheter-placed-through-the-abdominal-wall-into-the-female-bladder-suprapubic.html

    Only the experts know the implications though. I presume you have some urethral issue that precluded catheterisation or perhaps there wasn’t an “expert” who could get it through the urethra and decided to go suprapubic, or did you request suprapubic? I’ve not heard much about indwelling catheters without balloons. Do they exist?

87. Alicia,
    I self catheterised for 12 months before they decided to give me a SPC,
    I was having a degree of problems with the self catherterise.
    I also have a issue with retention. Thanks for your advice love.

    Andy,
    I really don’t feel that i am getting listened too, they are just keeping me waiting, and waiting, 13 weeks in pain and i am at breaking point.
    They carried out my first catherter change a few weeks ago, and i was living in hope that this would resolve the pain and the problems i was having. This was not the case.
    After an examination the consultant mentioned that it was the balloon rubbing which was causing the pain, and he has deflated it as much as he can, this has helped a little but not enough to stop the pain and the awful spasam’s.

    Andy the consultant offered to fit a catherter into the ureatha, but i lives with one for several months and it caused a few complications so they removed it.
    I am on both systems i have been on leg bag drainage and flip flo…. I find when i am on a leg bag, the pain is constant
    as its emptying into the bag, it sometimes feels like peeing broken glass.
    I have been on constant Antibiotics for nearly 13 weeks now and totally infection free.
    The flip flo system is good but i cannot hold much urine and i get a pressure feeling and i end up peeing normal, but the pain is excruciating. In addition with the flip flo, i find that when my bladder is emptying the last bit of urine causes horrendous pain and shudder, i took your advice about stopping the urine just before the bladder completely empties,but it sets of painful spasm’s.
    I constant have vaginal pain, that never ever has left me. I cry every day, and not coping very well at all,
    I can see myself going into depression, and i really did feel like drinking a full bottle of morphine to forget everything.I know this is not the answer, but its just how i feel.
    The urology department opens at 8.30am this morning and this has to be the last time to beg for help.
    Thanks for your advice and understanding Andy and Alicia it means a lot. THANKS!!

88. Hmmmm,

    Gill, I know that feeling of broken glass.

    I should explain again, my experience of a Trial without catheter and the relevant pain/indicators.

    So in jan 2012, I had a urethral sticture opened up. Then they put a urethral catheter in for one week, connected to bag/valve etc, whilst the suprapubic was left in place and spigotted.

    7 days later the fun started. (feb 2012)
    urethral catheter taken out whilst staying in hospital 11am ish. Try to urinate normally they said.
    So I drank loads and tried to urinate normally. Eventually I managed to urinate normally about 100 mls but it was painful.
    After about 6 hours I was told to urinate normally, and then release any bladder residual by opening the suprapubic line.
    EAch time it went like this
    1) urinate normally, 2) open sp catheter valve, wow flowed out nicely, but then suddenly would start sucking me inside out as the bladder shrunk around the eyelets. 3) At this point the agony was ridiculous and the blood started in the urine.
    4)I was drinking loads of water, probably 500ml every 30 mins.
    When I felt the super painful urge to go, I had about 5 seconds to urinate or it was agony.
    5) subsequent urinations were all the same. always a residual which the suprapubic emptied but the awful sucking feeling and a quick stop starting of urine.
    After about 8 hours of this I gave up and went onto constant urethral drainage into a bag. AS sson as I did this the pains stopped and the bloody urine stopped being bloody.

    The next morning the ward urologist checked in and I told him what was happening. I asked if the suprapubic should be removed so I could trial without catheter completely and he said “it can be, but if you have problems urinating, you will have to be urethrally cathetered”
    I should have gone for this anyway, but I didn’t, due to fears and I would rather have a sp than a urethral even though urethral is at leastgoing through a normal channel.

    Anyway, my Trial Without Catheter was a complete fail and I left utterly depressed, more than normal and went home.
    After waiting 10 weeks to see my consultant urologist, they said “don’t listen to the doctors, I told you that, the suprapubic catheter will have affected how your bladder empties, whilst in place”
    So, there is a painful point to be made that consultants understand more than their underlings, or think they do.

    Anyway, they said ” you simply need this sp cath removed, then we work from there”

    After about 6 weeks I had a urethral catheter/ ISC lesson by a urology nurse and then suprapubic removed. The agony of silicone catheters being removed from sp tracts is ridiculously short but intense.

    Within a few weeks urination was functional. 1 year on, urination is still functional so it seems that the sp catheter was totally mincing my efforts to urinate during TWOC testing. Always have a full TWOC, not a half twoc.

    It’s also revealed that part of the problem is that my bladdre generally won’t empty below a volume of about 150-200 ml’s.
    There are times I’ve done ISDilatation after urinating normally and passed up to 400m by catheter.

    Regarding bladder emptying, I am all too aware of 2 issues for me.
    Firstly though, I used to drink 7 litres of liquid ,90% water during the summer of 2011. I passed 5 litres of urine but still had odours and cloudiness and crystals even though I was using suby g 3.23% citric acid, saline etc.

    2 issues that affected me

    1) Bladder wall suck, this was nasty When my bladder was full I could do things, when its was sucking on the walls, I was almost paralysed because of internal twinging.
    I advise a flip flo or equivalent for anyone who has assessed mental function from the beginning, meeting the guidelines.
    This will reduce bladder wall damage if you keep a permanent residual, better than damaging the walls, for me….

    2) emptying. If you empty a flip flo you are creating a massive change of bladder tone. It will blast out and the siphon effect of water plus the bladder compression will make sure it wraps nicely around those eyelets in a high percent of cases as it gets down to maybe 150ml or less, your mileage may vary and I’m not an expert in any way.

    As I have feeling in the bladder, I simply thought:
    a) When urged, open catheter fully for a few seconds to achieve flush effect b) slow it down very much, let it drain slowly. c) stop it as soon as I feel any twinging inside.

    I didn’t care if this caused retention as it was better than epic bladder suck and damage.

    I was on vesicare 5 then 10mg for 1 month before this came out, I don’t think it did anything for me. What really helped was to avoid the bladder being trapped in eyelets.

    Thirdly. try not to glug amounts of liquids, but drink say every 15 mins or more evenly. As a person who was quaffing 1 litre of cold water upon wakeup on an empty stomach, I was passing between 45-50 minutes later passing 500ml of water urine in a 5-10 min gap. This creates the potential for a massive bladder wall suck as it “empties”

    Yet when I was doing this, I was not having any issues.
    They really became much worse in october 2011 until surgery.
    New catheters were placed and I was uncomfortably straight away, even had to urinate sometimes :S.
    I worked out simply that I had entered a state where I had too much liquid on board and I was bloating, which was pushing on the bladder but not actually filling the bladder due to it perhaps being locked in place by bladder wall stuck in the eyelets.
    I only started using a catheter valve from about march 2011…. I left it so late.

    Gill, which country are you in by the way?

89. Thanks Andy. Firstly i am a good North East lass, based up on Sunderland. How about you?
    Thanks for your advise too Andy, i will be taking your recommendations on board.
    It sounds as if you have had a raw deal too with all the different problems you have had over the years. How are you now? I cannot
    understand why the doctors and nursers cannot give you this information,to me it sounds like a common thing that a large amount of people experience.

    I called the hospital first thing this morning and i pleaded for help. (Literally) However what they have said is that they
    have ordered a style of silicon catheter that does not have a balloon attached (apparantly you can get them, and there is one uk company that still make them). As soon as it arrives the hospital will call me to have it fitted.
    In addition an appointment has been made for me next Wednesday to see a Urologist consultant that deals purely with bladder complications. She will be able to access my situation and hopefully get an understanding
    of why i am getting so much pain.

    Andy, You are right in what you are saying about the bladder suck, i have experienced this now for 13 weeks to the point where i break down and cry. It really gets too much for me !! and normally i am a tough nut to crack and can take pain!!
    I too have feeling in my bladder so i do get the urge still to go. (which is good i suppose) :-)

    I have come off the leg bag and put on a flip flo valve and i am going to do what you have said about taking it slow when draining.
    The only thing i am afraid of is when i go to bed and i put my night bag on, that i will be on a constant drain and will start to get the bladder suck and severe spasm’s.

    I am still undecided to get the SP out, and try going back to self catheter. i think i will wait and see what this catheter is like and what the surgeon has to say. :-) :-)

90. hello gill juist a quick one to say i hope it all goes well for you and you get pain free soon. Please if you go back to isc make sure you dont go into retention. Retention is not nice, been there never again. I went into acute retention i had 1500ml in the bladder. I have failed 4 twoc every time they take the cath out i go back into acute retention. I do not want you to suffer like i did. I also have no control with my bladder. It retains or floods no warning no urge no nothing. it just leaks the full lot. I have a complete distroyed bladder function.
    sending you lots of love and understanding hugs to you gillxx

91. It’s a shame that aol can’t get their email act together. Some email notifications come through, others’ do not, otherwise I would have replied sooner.

    Gill,
    I can guarantee that no one on this planet that has feeling in bladder can stand the bladder suck over time, especially when the wall is wrecked and sore and pushing through to other areas that you mentioned.

    I’m not sure if everyone has problems with catheters, but I certainly did.
    A catheter without balloon, that will be an eye opener, I think.

    On night drain, I ended up simply leaving the valve shut with a leg bag taking the load and waking up when I had the urge. It was far better for me to get to a full bladder, without any catheter/bladder wall interactions and it could be emptied below trigger point and rinse repeat.
    Easiest way for me to tell if I had a bladder suck problem
    1) Can I play with catheter?
    a) No it hurts like hell even if I just twang it
    b) yes, I can even twist the catheter around 180degrees temporarily and it sort of glides even though its a silicone one. (when its like thisyou know there is gap between wall and eyelets.
    b was better and more health than a) infections notwithstanding.

    In fact due to the catheter issue for the last 6 months I had it, I spent nearly 4 months lying on my side to drain urine, as it just felt like it wasn’t working lying on back.

    I wrote many letters to the consultant in those days, back in 2011, and I got answers but there wasn’t any suggestion of why. shame.

    As I got lazy with the nhs standard issue leg bags, sometimes woke up screaming and noticed a big massive blister bag of 600 ml (500ml capacity) ready to burst inc back pressure. A quick empty via the valve and to the night bag made it easy, and I was fine again.

    the important thing was keeping that damn catheter from the bladder walls.

    sounds crazy, but if that wall gets sucked in you can get big chunks trapped and that will in effect block the catheter.
    Psuedopolyps of the bladder is a valid term for good reason.

    I had some 2-3 inch long pieces of bladder wall came through the catheter eventually. nice shape…
    Which was caused by squeezeing the catheter to try and encourage flow. I was advised by southend continence care to lift the leg bag up and let it drain back in to clear any simple blockages. The problem is due to two eyelets and liquid pressures.
    I thought by squeezing the catheter, that I was creating a deblocking but more than likely one eyelet was letting the pressure through and the other could have been chewing on the wall due to syphon effect.

    Right, I must be off. I hope that the valve trick can help you a bit.

    _________________
    Alicia,
    I remember
    acute retention. ugh it is awful.
    My urethral stricture had fully closed and by the time I got to hospital I was already very disturbed and whilst I was waiting in waiting area for a and e I felt my left kidney stabbing at the back.
    Over the hours this got worse until I felt a really full front body burning feeling plus the stabbing. Due to urinating epicly (but involuntarily) and therefore reducing the emergency need for catheterisation I was constantly de=prioritised that day, which I suppose is right, but it meant that I had entered hospital at 10pm tuesday, had catheter attempts made between 2 and 3 am, urinated involuntarily, best ever for prob 14 years (long story) then was left to build up again until I was finally suprapubically catheter at about 5pm wednesday. in short, 19 hours :S A few hours delay was due to needing the ultrasound scan to make a mark on the belly for the suprapubic installation, to avoid the bowels.

    Anyway, I’m off to blot those memories out.

    To this date I don’t know why only one kidney ached and not the other. I don’t think I want to research that.

    If I went into retention nowadays I feel my bladder would not tolerate it.

92. Alicia and Andy – Thanks for sharing your experiences,
    I can clearly see that you have both been through the mill too. :-(

    As i felt as it i was not listened too, At first i felt i was alone, as the hospital keep on telling me that they normally don’t get many complications like i am experiencing. I sometimes feel like the hospital think i am making everything up.
    It sounds like its more common that what they think.!!!

    The hospital have called me today and they have said that if i wanted i could come down to the hospital this week and get the SP catherter removed, and revert back to self cathertise.
    Half of me says yes.. yes . go for it, just so i can get relief and rest.. but the other half of me thinks shall i wait till next Wednesday to see
    a complex uroligst surgeon.

    Andy What is your situation now, has everything returned back to normal or do you self catherterise?

93. Gill,

    I found it quite disturbing even in 2011. Now we have “austerity” and budget cuts, it can only get worse, leaving the competent people at breaking point. Hear no evil, see no evil and speak no evil is a classic saying except the evil is something unexpected that threatens to eat up nhs time so they play pass the piece of paper around. It needed more support, not less.

    Yes, I reckon seeing the complex urologist surgeon will be far better.

    Have you tried what I suggested regarding draining bladder via catheter valve. 1) start fast, slow down. 2) stop when feeling a slight pull or even before that.

    I forgot to say that the tips above would only work if your bladder urge point is high enough to allow you to hold urine. A well rubbed bladder will also be more sensitive and maybe contact too often until it heals a bit.

    I also just realised that the bladder/vagina issue could cause problems with holding urine, when you sit down etc, as the increased pressure may try and push bladder through the weak point or increase it.

    I think the only safer option in the short term is to try and have a Specialist fit a urethral catheter at the very least
    This will put the suction point at a new area and “maybe” reduce the potential of going through the weak point.

    Catheter issues are a classic overlooked major problem.

    Only intermittent catheterisation will stop the damage you are suffering or the balloonless catheter suggestion, but surgery to repair the weak point might be possible. I hope the consultant does a full evaluation.

    :)

    I am very lucky, I only have to do ISD once per week. My urethra has a few sore points and some narrowing, but it certainly could be worse. Before my surgery I was wondering if I would be one of the percentage that closes up within a few months. I do my ISD nice and slow to avoid any trauma as I believe less pain and no blood means very little urethral damage and subsequent scarring. I have done 4 or 5 in one day, on occasion, and I have to use a tiemann tip, hydrophilic catheter to get through without puncturing the bulbar urethra area. I might start using instillagel again as it is more slippery than the hyrophilic coating and helps to lube the meatus.

94. Gill – I can understand that. I did exactly that. Had spc removed and went back to isc but ended up in retention again when I was next ill.

    Currently have sever – and I mean severe- abdominal pain. Its unusual, I have a bad infection probably in kidneys too as I have back ache but the adominal pain is burning started out near where the tube goes in and is slowly spreading right. It is sharp burning pain, much worse whenever I move.

    Have just seen doc but he thinks its infection running from outlet (or inlet!) hole to bladder. It doesn’t feel like past infections even when its tracked to kidneys. This pain is much worse and feels more like when I had my gall bladder out, was left with leaking bile duct and ended up with peritonitis. Incredibly tender in that right side of tube area, I have had pancreatitis (as result of bile duct leak etc.) and this is on a par with that. I am on strong pain killers and this is breaking through that easily. It’s also odd that its only on right side and seems to track more from tummy button area – slightly above where spc goes in.

    Any ideas or suggestions anyone? Doc put me on antibiotics (trimethropin) and said go back if it gets worse. Am trying to distract myself hoping it will ease off.

95. Tamzynn, Trimethropin is a general antibiotic. Did the Dr. take a swab of the site and urine sample for testing? Identify the strain of infection as some require specific antibioticts. Such infections can do permanent damage or even be life threatening so a week in hospital on Gentamiacin x3 50ml stat daily can be inconvienient but well worth while.

96. Hello everyone,

    My name is Darshana, I’m from Malaysia. I’m actually enquiring for a close friend of mine who after a waterfall accident 3 years ago was left paraylsed. In medical terms, that would be quadreplegic.

    He uses an SPC catheter, and has not had any problems at all for the past years. However, about two days ago he mentioned having a discomfort in his bladder, ie. a feeling as if his bladder was full. Its been constant for two days so far. Just before this, he also experienced some testicular pain, though not severe. I reckon it may have been some nerve discomfort, as we have been told this can happen.

    I am particularly concerned about his bladder issue, though. What I understand is that the SPC should relieve his bladder when it is full. However, are there any chances that this does not happen? His bag is emptying normally, so that tells me that urine is flowing nevertheless normally.

    I also checked his insertion site, and that is clean; nothing out of the ordinary there. He isn’t having any UTI symptoms either, ie. fever, sweating etc.

    Is there anything I should be concerned about? Is this normal? I should also add that with the testicular pain, this was the first time he had experienced pain below his waist since the accident. Not too sure if that is a good thing or a cause for concern.

    I’d really appreciate some assistance and thoughts. So far, everything I’ve tried to read and find out more about was not helpful in any way. Thanking everyone in advance!

97. Darshana, As your friends SPC has worked well for some years – the problem he is having now could be because the catheter is in too far. Over the years the bladder has probably shrunk – like a deflated balloon – and the catheter balloon – if inserted too far might be irritating his uretha causing pain and possibly flow. lf you gently just turn and ease it back out a little and see if it becomes more comfortable. At the next cath change get the nurse to insert it slowly – and as soon as urine flows into the bag that is the time to inflate the balloon.
    Hope this helps – l have had my spc 18yrs -so have come across a few ‘tips’.

98. Hey folks. it’s been over a year since I was last here. I’ve had my spc
    for 2 & 1/2 years. Due to my lovely wheelchair, i got a pressure sore on my tush that got infected due to a UTI, ended up in a nursing home, got mrsa and a hip pressure sore. hip is fine now, just waiting for tush wound to close up.

    Up until December of 2012 having my spc was the greatest!

    My problem for the past few months has been spc getting blocked. a lot of sediment (or crap) constantly coming thru. Always flush nightly now and drink lots of water. Use sterile water or a vinegar mix to flush cath with.

    Any suggestions?

    PS: Hey neighbor Gill, I’m in Springfield!

99. Hi,
    It has been a while since I have posted a comment, but I read those that are there when I get the mail telling me of updates. It is very reassuring to know that you are not the only one with problems, and there is often an answer to them.
    I have had my SPC for nearly eighteen months now and overall it has been a boon to me, I have only had one UTI in that time, whereas before I was getting one once a month on average. The only real problem that I have is that I still get some discharge from the site and it can get a little smelly. I don’t use antiseptic wipes, just baby wipes or bathing, and I don’t cover it, I prefer to let the air get to it. There has been some granulation, which has been treated with silver nitrate several times now, and I find that after this it is better for a while. I go to the hospital every eight weeks to have it changed by the doctor who put it in, and I trust him to do it properly. It is not something that I look forward to, as I have some sensation and when he pulls it out I get lots of spasm. Today was probably the easiest change yet, so I must be getting used to it!! It is definitely better at night, as before I was constantly being woken by my bladder wanting to empty. Overall, I am glad that I had it done, and I am willing to put up with the few difficulties that come with it.

    Carry on commenting, because there is always something new to be learnt.

    Cheers,

    Les

100. Thanks Graham – just got out of hospital, got a lot worse shortly after that message and in hospital on gentamiacin within a few hours. Very grateful to be here.

     Surgeons have asked urologists to relook at SPC as infection was so bad this time.

     Good to see that people keep coming back here. Good site. :)