Super Supra Pubic Catheters

1,776 thoughts on “Super Supra Pubic Catheters”

1. Hi Barbie, thankyou so much for letting us know. On behalf of the forum please pass on our love and best wishes. I’m sure you just being there is of great comfort to your Mom. Keeping a check on sepsis is great to hear, especially if there is any bleeding. I had a heavy bleeding ruptured urethra causing renal failure and double kidney infections, chronic enough to show up on x-rays. My doctors did the sepsis watch and nurses gave 3 x daily 50ml Gentamiacin IV stat for 7 days. It knocked me flat for a month or more afterwards. So expect your Mom to tire quickly when you get her home. If you need to vent or have questions feel free to post here, I’ve much respect for your wonderful Mom.

2. I had a positive culture for 2 bugs, kleidsilla and pseudomonas. Not sure of the spelling, the 2nd bug required a picc line and IV antibiotics. The great thing was I only spent one day in the hospital. I am home and get my drugs twice a day, the severe cramping and flank pain has subsided. I can’t believe what a difference a day makes. Looks like I will be back to my cranky old self within a day or so.

3. Hi Graham! I am out of the hospital now and well on the mend. My daughter Barbie wrote you. She originally told me of you. I think i will keep my urologist (no sense on training a new one,,lol. I had infection but my lower back pain was more that i was full of S____. A long time ago u couldn’t say the word without getting an enema..now.,. not so much. I did have to ask for sheets the 2nd nite. I really thought they went the way of enemas! It was a learning process, i learned i need to keep my guts loose….more chocolate pls! I loved my Barbie for going to bats for me. I do for my 81yr old mom. I am toying with the idea of pulling the plug on my spc. (before my family pulls the plug on me. Why can’t i have a short spickett. I have learned that one shouldn’t push to pee. It goes up not down and not everything that goes up Must come down. I’ve got 50 sterile ensure bottles filled with sterile water ready to do some house cleaning of their own. Take care good friend and HOW R U DOING?

4. Hi Graham, I care for my daughter who has a neuro-muscular condition.I recently found this site and have learnt a lot, my daughter was fitted with a supra pubic catheter 3 weeks ago and has had a few problems although things are starting to settle now. The main problem is itching, she say’s she feels like she is insanely itchy on the inside and all over her lower belly, she also complains of itching with any tapes i have tried that secure the catheter. I’m not sure what’s causing this but any suggestions would be appreciated. thanks, great site.

5. Hi Ronna, glad to hear you’re home alright. SPC or IDC bearing down would be just as problematic. You could use a spigot, the average person voids 6x daily, drinking 3 litres/day you should double that, 10-12x daily with an overnight drain bag when sleeping. Im getting better everyday thanks Ronna, these hot sunny blue skies help.

6. Hi Bonnie, the itching is likely neurogenic in your daughters case. Quadriplegics often get a similar sympathetic nervous system response to supra pubic catheters as burning, itching or painful sensations despite having no direct feeling, amputees call it phantom pain (feels like the limb still exists). Medications can dull the nervous system and numbing gels may ease the itchy reaction by numbing the cause. Micropore tape is apparently hypo-alergenic but I find Hyperfix better and very sticky. There is also a litle device called a StatLock used to secure catheters and tubing.

7. Hi Graham!! It’s me ronna’s daughter… I feel so bad for my mom. She has had such a hard time with this spc. Graham ….call me ignorant,but what do people with paralysis feel? Do they have pain associated with the spc? I kind of read your previous post. Is there any natural herbs or old wives tales out there that can fight the constant infections my mom is going through?? I am so afraid that she is going to develope a resistance to every antibiotic known to man!!! Maybe she needs what you have…. Blue skies and warm sun!!! There are days she fells so bad, she may not leave the house for a week! And she is perfectly mobile!! Well you have a great eve and I really appreciate everything you do on here and I am glad I found this website for my mom !!!!

8. Hi Barbie, paralysis from spinal cord injury affects all muscle function (movement) and sensory function (feeling) below the level of injury. T12 (above hips) paraplegics typically cannot feel or move anything from hips down, C4 (middle of neck) quadriplegics nothing from shoulders down. Every injury is unique however as the spinal cord is so complex and unpredictable. I’m a C5-6 quad, I feel nothing from nipples down, stab me in the stomach I won’t feel it, nothing at all, but after an hour I’ll get a buzzing numbness or warmth there, look down and say, “Hey, who cut me?”

   That is why many get pain, burning, itching sensations from supra pubic installations. The body sends messages of pain to the brain that would normally alert you, after SCI these messages can’t get past the damaged spinal cord, at least not fully correctly immediately. This post explains more: interactive spine.

   The best natural anti-infection advice is 3 litres+ daily. Push that sucker out with fluids. I suggest a number of foods and fluids of benefit to prevention of UTI in the article above, but the #1 is 3 litres+ daily. The sun is actually good for healing and prevention, which is where I’m going right now, to sit in the sun and have a beer, Doctors orders lol. ;)

9. thankyou for the info, im at home waiting for my wife to come home from hospital after have this fitted. feeling nervous as not knowing much about this. your info has helped alot. thankyou regards gary.

10. Hi Graham, thankyou for your advise, i have changed tapes and things are getting better, i will be sure to speak to doc about meds,hope you are well and thanks again!

11. Glad to help Bonnie. I should have mentioned silver coated catheters, a little more expensive but many report a marked reduction in itching and alergic type reactions by using silver coated catheters. Medications such as Ditropan and Baclofen may help but of course at a young age it’s best to avoid them where possible. The numbing gels I mentioned are Lidocaine Zylocaine or milder Bonjella — any babies teething gel — used when changing catheters and applied topically to the itchy areas daily. Also have a doctor test for UTI (urinary tract infection) as itchyness is a symptom.

12. Hi Graham
    Love your site! Thanks so much for sharing. I have limb girdle muscular dystrophy (also have my two sisters with it too) and we lead very independent lives (just have to say that coz i hate sympathy!!!) I actually think I have a better quality of life than most of my able-bodied friends…but then again….who am i to judge!

    My question is, that I have an SPC after a really bad fall at home. I didnt have much choice really because the catheter up the Uretha was just WAY too painful and uncomfortable. Being a woman, well…it was awful…and despite the fact i get around in a wheelchair…i do intend to have sex again…(please God! – looking up to the heavens). Graham what are the signs of a UTI? I get lots of pain in my bladder especially if ive been a bit constipated a few days prior (let alone all the good food I eat as i am really conscious of diet). It becomes painful and then i start to feel really like i’m getting a cold, and my pee then starts to get slightly pong-y.

    I am concerned that as women, we do mensturate as well, and I’m keen to find out from some of your female SPC members if they tend to get infections after their cycle…coz i do…and with lack of carers…this is a difficult time for us women!

    Hiprex doesnt work for me…but i take loads of Cranberry (50,000mg per day in one capsule) and I’ve also found that Ethical Nutrients Urinery Tract Support is brilliant for lowering pain in bladder.

    Before I go, i find it distressing to read of those USA medical websites that talk about bladder cancers from SPCs…I feel like punching them in the nose, because I read some scholary literature that stated the perieved higher indicents of bladder cancer fro SPC wasnt as high as first thought. What do you think? Anyway, buggar it…its about quality of life….:)

    From Australia, see ya later mate!
    JWTAS

13. Hi Jwtas, common symptoms of urinary tract infection include nausea pain itching and burning sensations, chills, flushed skin, fatigue, lack of mental concentration, increased spasming, and concentrated cloudy or darker urine as well as you noted a stronger odor. The feelings you get certainly indicate the presence of UTI.

    Women are more prone to UTI then men as their urethra is shorter and closer to the anus. For this, women are more likely to get an infection after sexual activity, menstruation and bowel accidents. Menopause, using a diaphragm for birth control, periods of inactivity, and pregnancy also increase the incidence rate of UTI. Constipation typically doesn’t but as you get pain I’m sure you are doing all you can to prevent that from happening.

    Urinary tract infections can be hard to avoid especially as mentioned when lacking care support. If you have a particularly heavy flow using a pad may help draw it away rather than come in contact with other lady parts causing infections. I’ve never used ENUTS so thank-you for your input, I will keep it in mind.

    It’s true Supra Pubic Catheter’s increase the presence of cancerous tumors post ten years, caused by the catheter rubbing on urethra and bladder, though any permanent catheter will do this. Again difficult to avoid but as long as you have regular checkups it shouldn’t be of major concern. As you say, it’s a balancing act between quality and quantity.

14. Iwas so sorry for myself untill I read yor column I have been diagnosed as having a non funcrtioning bladder I can pee maybe 100 mils and retain around 600 and am having to self ctherterise 3/4 times a day since sept 2010 and have landed in hospital several times with urine infections the last one was so severe that unable over the xmzs holiday period to get help soon enought it triggerer a heart condion and i was in hospital for 3 days. I find the urology dept in my hospital very unsympathic and get told to get a superpubic device fitted or put upwith the situation. as I am 80 years ond and have not had the best oucomes from former sugical intervention I am truely frightened to resort to the insertion. What do you think , would it be an advantage ? is it possible to meet some one in my area who has had this proceedure? look for ward to hearing your opinion thank you B

15. Barbie
    Some of my personal support workers also work with other individuals who are of all ages particularly older people and they have super pubic catheters. Whilst I’m only in my early 40s, my superpubic catheter has provided me with enormous freedom and peace of mind. With all medical interventions, there is an element of risk. I do invest alot of energy into personal development trying to accept these medical interventions as part of my impairment journey. Look, the procedure is a bit scarey, but its over and done with quickly. Also, leading up to my choice, i realised i had no choice. Quality of life is very important to me. Good luck. I’m sure you will make the right choice for you.
    Take care
    JWTAS

16. hi its been just over a week since my wife jan had a spc fitted.still got stabbing pains in tummy,hope this settles soon.

17. Hi Gary, did you try some babies teething gel or a stronger numbing Lidocaine gel around the catheter? That may give her some relief.

18. hi Graham,wound is covered with a dressing ,has to stay on for another 5 weeks.thankyou for your reply.regards gary.

19. I am Marcie. I been sick my bladder had lots infer action without supra pubic catheter from January 20 2004 until December 16 2010 I had surgery for supra pubic catheter by female urologist on December 16 2010 since December 16 2010 I felt better much no more sick no more infer action!!! My supra pubic catheter is great!! I am new life

20. Hi Graham, was wondering if you could help me out. I have a super pubic and don’t seem to have too much problems with it (touch wood). However after getting over various problems with my condition, Syringomyelia, I am now extremely over weight. I used to be an extremely good swimmer, Commonwealth team NZ, and would dearly like to start swimming again as a form of exercise. I can’t use my legs but I have strong arms, however due to my condition I cant put a peg or a flip flow onto my catheter because I have no where to bypass. My surgeon did say there’s a dressing but I cant seem to find one. Could you recommend sites for me to look for said dressing, even the district nurses who change my catheter don’t know of any kind of dressing. So please any help please.
    Yours Sincerely Wendie

21. Hi Wendie

    How are you? I am fine. I been have my supra pubic catheter since December 16 2010 You can find newest belly bag urinary drainge for swimming suit or short or skirt at store no problem

    From Marcie

22. Wendie: Some doctors suggest using a large sticky waterproof covering like Tagaderm to seal off the SPC site. I’ve never had much success doing so, it comes unstuck or leaks. As long as your site is reasonably healed it’s not necessary to use anything. I’m unsure why you can’t bypass, use a stint, or flip flow valve.. As long as you cease fluid intake and empty your bladder just before swimming you shouldn’t need to void again for at least an hour.

    If not possible there are several types of sealed bags you can use as Marcie suggests. Just empty and tuck up under your swimwear, if you have a few extra bumps due to weight, I don’t think many would even notice an extra one.

23. I have a question about the methenamine. My mother lives with MS and has an indwelling catheter for a long time (maybe ten years, or more…). However, the last couple of years she has had a lot of very serious uti’s. So, I found this website – awesome, I must add – and was wondering if the spc might help her to not get so sick. Her doctor just prescribed the methenamine to try to prevent further infections (no mention of a spc) and her insurance does not cover it. It would cost her $174/mo. to take it (that is the generic cost). The doctor feels that the effects of the methenamine are minimal, and he is suggesting that we could just go back to the low dose antibiotic treatment that they were trying, although she got another uti anyway doing this. I would really like for her to try a spc. Do you feel it is necessary to take the methenamine along with having the spc in place, or do you know of any alternative drugs that may do the same thing?

    Any help you could suggest would be appreciated.

24. Hi Graham, thank you for your help so far, my daughter had her first catheter change last week and it went better than expected, all seemed fine until yesterday when the catheter stopped draining properly, there didn’t seem to be any kinks but her bladder became uncomfortably full and started to leak from the urethra, i did notice a white powdery like substance in the tube and a crystal like clot come through, does anyone have an idea as to what this could be and what can be done to avoid this from happening again? Sorry if i sound a bit naive, this is all new to us.
    Thanks again,
    Bonnie.

25. Hi Tara and Bonnie
    I am no means an expert, but i’ll tell you my story briefly to assist you with your queries. I have muscular dystrophy and after a really bad fall, i couldnt stand up anymore, so going for a pee would mean 24 hour carers about. So i made the choice of having a spc. the only chemical drugs i take are Ethical Nutrients: Urinary Tract Support. I think i have developed cysitis too..so these natural nutrients really help to alleviate the pain and symptons of that.
    Bonnie..you will find that there are lots of ‘gremlins’ happening in the tube. and sometimes you may get crystalised bits and pieces which can block the catheter. I even found for the first 12 months, some blood little bits too, especially after catheter changes. but this is reasonably alright – but if you have red pee…get to a doctor quick…thats a sure sign of advanced kidney infection. I’ve had blocks too, and realised…drink plenty of water. PLENTY of liquid is important to flush out potential chrstylised gooblies…
    Tara…I would suggest you ask your doctor to refer you to a Urologist. And I would also as the MS society or organisation to put you in touch with other members who have SPCs.
    I had to make a decision – catheter up the uretha…(oh dear god, that is so painful) or an SPC…yes please…an SPC because i intend on having sex again AND it simply doesnt hurt as much as the other uretha catheta.
    Get advice. TAlk to nurses, especially if you have continence clinic. Only listen to nurses/practitioners you trust or feel a good connection with. Keep talking to us..the SPC specialists (because we live with them!!). You need to take control of your decisions around your own health…not the medical fraternity. Work with them…do your information searching…and good luck. Life with disability isnt necessarily horrible…its fantastic. But we just need to be safe and secure and have peace of mind.
    In the spirit of being free from infections…!
    Regards
    JWTAS

26. Tara: Alternatives to methanamine used to treat bacterial infections such as pneumonia and urinary tract infections are prescription medicines; Linezolid (Zyvox), Spectinomycin (Trobicin) no longer available in USA, and Nitroxoline and herbal preventatives; Cranberry, Goldenseal, Marshmallow root, Buchu, Uva Ursi, Corn silk, and Horsetail. None of these are specifically required to be taken by supra pubic catheter users, or any catheter user. Like any medicine they are simply available for those who are experiencing problems.

    Research suggests a same or very similar incidence rate of UTI between supra pubic catheter users and indwelling catheter users. While that may be true it’s not based on a same case scenario, it doesn’t take into account that catheter users have a life, what works for one may not work for another. A bowel/bladder incontinent woman will on average experience 3.6 UTI/yr with a supra pubic catheter. That same woman will experience far more UTI’s using an indwelling catheter as the catheter creates a pathway for bad bacteria to enter the urethra and bladder.

    Therein is your answer Tara. If your mother is of reasonable health with no underlying complications besides MS I would say no, an spc will not be of great benefit to reducing UTI for her. In fact having full sensation in the abdominal area it may cause more pain than it’s worth. Now if she’s bed or wheelchair bound, overweight, sweating alot, unable to practice good hygiene, change catheters sterily etc. then these complications lend to an spc being of great benefit. Talk with your Mum and Doctor, weigh the pros and cons, if you have further questions fire away, we’re here to help.

    Bonnie: You’re welcome. The white powdery substance is sediment. Everybody produces sediment in their urine it’s just that normally we pee it out without noticing. It’s important that permanent catheter users drink at least 3 litres/day to prevent sediment building up blocking the catheter, the internal diameter of a catheter usually being much smaller than tubing.

    Her catheter possibly temporarily blocked from sediment until enough pressure built in the bladder to free it. This trauma on the bladder most likely caused the blood clot. Sediment can encourage bacteria growth leading to urinary tract infections. Push fluids steadily over the day and if the problem persists see your doctor.

    Leaking (bypassing) can be terribly embarrassing especially in a classroom as children can be so cruel. Try to let your daughter know that while a nuisance it is actually a good thing, without what I call “that safety valve” you can damage your kidneys or even cause renal failure (kidneys shutdown) and you need to replace the blocked catheter urgently. That safety valve a) gives you warning b) gives relief and c) time to act.

    Should you encounter a blocked catheter you can disconnect any drainage device or tap and force sterile water up the catheter with an open 50ml syringe to free it. If it will not free the catheter must be changed. Sterility is secondary when it comes to unblocking a catheter but is best practice.

    Jwtas: Thanks for helping out mate, I was laughing at red pee.. get to a doctor quick. Haha, accurate.. but funny.

    Who thinks we should add an spc pro/con list to the article?

27. Advantages of an SPC:
    1) I dont have to worry about when I need to do a pee, and how I am going to do it, and if the bathroom is wheelchair friendly
    2) I dont have to worry about falling over and get stuck on the floor for 10 hours overnight in the freeezing cold with four fractures and rips in my arm
    3) I then dont have to worry about my dog wanting to sit ontop of me as I wait for the carers to arrive to find me on the floor.
    4) i dont have to worry about finding extra funding for care support
    5) I can pee now in the most unusal places … and can see the opportunity to develop a pictorial guide of where to pee in my local city for those with pee – bags… especially the vacant spots main roads.
    6) I pee’d on a vacant grassy lot on a main road, and no one had any idea i was having a luxurious pee in broad daylight during peak hour traffic.
    7) when i’m out with my friends, I can now write my name skillfully using my wheelchair with my full pee bag and value open
    8) its really important that if you are showing off on the dance floor and you happen to be doing a solo infront of a crowd of 150 diners waiting for the disco music to finish and Abba-impersonators to come back on the stage…to remember to do your valve tap back on, for you may find yourself showering the audience in droplets of pee…especially if you just drank way too much champers.
    9) I now have a bevvy of pee jokes
    Howz that for starters????

28. Haha you’re to fun, that’s a great start, I can see the hilarious image gallery. Here’s me at the beach, peeing. Here’s me beside a potplant, peeing. Here’s me at the state fair, peeing. Here’s me and my wheelie friends, all peeing!.. lol. It’s a Charlie Sheen substitute for winning, peeing! Register an account here and I’ll make you an Author, login and start uploading. You should write a post all about you and your story too.

    pro) no rope in my drink while intermitantly catheterizing in the toilets
    con) no numbers from the bathroom wall
    pro) no sticky pee on my wheels
    con) no one passing me a reefer under the stall

29. Hi,

    I’m new here, I’ve had my SPC 10 years now and yet I’m still frightened of having it changed. I have to have a seditive before. Does anyone else need this?

    Emma x

30. Emma: I don’t get frightened but those changing it often do. Mum having changed mine a thousand times still gets nervous. It’s mostly because they don’t want to hurt me. Is that why you get frightened, you fear it will hurt?

31. Because of a neutrogenic bladder that was weak, my husband’s Dr. did a suprapubic catheter. He can urinate normally or empty the bladder from the catheter. He hooks up to a bag at night so he doesn’t have endless trips to the bathroom at night. The big problem he has is significant leakage around the catheter. When he sits in a low couch, crosses his legs, or even at night sleeping, everything gets soaked. Dr’s nurse put in a larger catheter this week and that didn’t help. Dr. doesn’t seem to have any ideas. My husband (86 yrs.) is a very active man, walking miles, gardening, doing ours and a church lawn. It’s difficult to go and sit in church or in any social gathering without getting soaked and being very embarrased.

    Do you have any help or advice or know where we can get any? We are desperate. Thank you so much for listening and hope some help is forthcoming.

32. Wanda: First let me thankyou, your email lead me to find unregistered commenters could not comment. I have corrected that problem for now. If hubbys suprapubic catheter is new it may just take time to heal closed tighter or may require a stitch to aid the process. Post 12 weeks or more I suspect he is to active. One of our kind members (see Marge, May 16 2010) came looking for the same answers you are and after trying many things found pushing and rotating the catheter daily to prevent it sticking was enlarging the passageway. When they stopped rotating the leakage (bypassing) subsided. It’s hard to restrict activity but is what I suggest you try first. Possibly including a Stat Lock or taping the catheter down to tummy but do not cover the entire site with tape long terrm while bypassing exists as urine can burn.

33. Hi all- I have a few questions that I am having a hard time getting answered. I’m hoping y’all can help. I am a 51 year old, active healthy woman, non ambulatory due to multiple sclerosis. I finally realized that I needed a supra pubic catheter due to my inability to get on and off the toilet. I had one surgically installed last week. I just do not know how to wear the bag without it being seen and with me being able to drain it myself. The thigh bag is too long and is quite obvious. The calf is less obvious, but is difficult for me to bend over to drain. My Doctor said that I can just keep it plugged and unplug it every hour or so to drain, but….. I can’t get the damn plug out and it won’t reach the toilet anyhow. Is there a good site with other options to buy? Perhaps a plug that has a drainage attachment to it or an extender that lets it reach the toilet along with a plug that has a drainage attachment. I am very frustrated and can’t stop crying and am already thinking that this was a bad idea. Any and all suggestions would be very appreciated!!! I can’t stop crying over this (perhaps it’s the drugs from the surgery) and I hope there is an answer out there. Thank you!!!!

34. Hi. Graham, thanks again for all the help, i am learning so much on this site, i am amazed at how much you’re not told by dr’s.
    Cheers to all.

35. hi Leslie,

    I dont know where you live but i use something called a flip flow valve when i am in the shower. this is a plug that goes on to the end of the tube but it has a lever on it so you dont have to take it off, you just flip the lever and drain out. you can get these usually from your doctor but if you live in the uk, try a company called bard and they should be able to send you some out.

    as for the bags, if your finding them too long, there are smaller ones (300ml) that might help, also try strapping it higher up your leg but make sure you dont kink the tube at the same time. i wear very baggy trousers that cover it without it being obvious but thats personal preference.

36. Hi Leslie: as Emma says Flip Flow valves are great, twist and squeeze to drain versions are also available, most of these will allow a tube to be plugged onto it if you need to extend. Besides thigh and leg you can also get what are called a belly bag, simply Google those terms and if you still feel like crying plenty here have strong shoulders and experience.

    Bonnie: you’re welcome, anytime.

37. Hi Graham and Emma,
    Thanks for the info. The belly bags sound interesting to me, but do they really work with them having to flow upwards? I’m still looking for the twist and squeeze drainage systems. My hands do not work well, so I want the easiest system and the most hidden, as I am vain and do not want the world to see my urine! :)

38. oh, and do belly bags work for women?? All the ads show men!

39. Hi leslie, I have used belly bags for nearly 2 years and I wouldn’t think of going back to a leg bag. You can’t even feel it and it is un noticeable under clothing. And yes they do work, even though it has to go uphill. Think about when you are lying in bed, with a bedside bag. Your cath comes out of your belly before it goes down to the bag, so it is indeed going up in that case also.

    As for a “valve” I take a used belly bag, cut the valve off and inset the top connector directly into the valve… Works great and it’s recycling! If yours hands don’t work well you may have issues with the valve on a belly bag, however. They use a twist valve. I don’t particularly care for it, but it works and isn’t bulky.

    -Craig

40. Graham… Just thought I would mention, I was in the bahamas last week, and made a 25 foot dive. No issues, and as I always do when I swim, I just left my belly bag on. I still have not had procedure for suprapubic, and have transurethral, but I figured it was noteworthy.

41. So……am I crazy or do the Doctors and medical supply places just have no clue on how to deal with anything but a leg bag? My Doctor’s office, which is a urological specialty clinic has never even heard of a belly bag and they only have one type of plug for the end of the supra pubic catheter. One supply place in my area has a belly bag, but she said that no one ever buys it- they all love leg bags! So again, do you all buy your supplies from the internet? Are there different sizes available for the belly bag, as I weigh 120 lbs and am short waisted? Is there a best place out there to buy different types of plugs?? I am so frustrated and can’t believe that no one has the answers for me in my area (Eugene, Oregon, US). Thank goodness for your site Graham!!!!!!

    Also, my doctor’s office says to not clean the bags and they will give me a new one every 4 weeks and other places say to clean them with vinegar and other places say to replace them every 2 weeks. How often do you guys say to get a new belly bag and do I rinse it with vinegar??? Sorry for all the questions, but I feel like a fish out of water and no one to plop me back in.

42. Leslie, I thought the same thing after I started using the belly bag. I reluctantly bought my first one on ebay… After I used it I couldn’t believe anyone still used leg bags… For me, leg bags slid down, became disconnected, pulled on my cath, and were just a general pain (literally). I could run a marathon (summing I could run that far lol) with a belly bag.

    As for size, they are one size fits all. They have a nylon strap with a buckle that adjusts, and you cut off excess length on the strap. Think of a fanny pack that you wear under your clothes. That is about the best description I could give you.

    I get mine from http://www.athomemedical.com. I change to a new one with every cath change say about 4 weeks. I just rinse with hot water evey so often, and it does fine. I actually sleep with mine quite often,, so the only time I disconnect is while I shower. As I mentioned before I also swim with it under my swim suit… A woman could probably hide it under swimwear with the skirt thingy.

    -Craig

43. Thanks Craig. I just ordered one to try out. I’ll keep you posted.

44. Hi all… I’m hoping someone can help me. I had an SPC fitted 2 years ago and love the independance it has brought. I’ve been single 3 years but have recently met someone and am terrified of having to tell him that I have an SPC. Has anyone here been throgh anything similar, and can maybe give me some advice on how to explain it without having him run for the hill

45. Hi CornishPixie,

    I met my partner 3 years ago this year. I told him about my SPC within days of first speaking to him so he knew about it before meeting me face to face, or having to empty it for me on a spur of the moment!, so he knew what to expect. I always think if they haven’t ran at the SPC idea, then they’re a keeper! If they don’t like the idea then they’re obviously not worth it. Its all about being honest from the get go really :)

46. Hi CornishPixie: It shouldn’t make or break your relationship. Anyone needing a supra pubic catheter also needs an understanding partner. He got this far sooner or later he will find things relating to your spc and think whoah.. what the. It’s a litmus test, if you will, they can accept the spc or they were not worthy of you in the first place. I’m a male with spc 16yrs, the girls who frequent here would be much better advice if they will, so I’m only going to say don’t use the term, “we need to talk.”

47. Since my divorce a few years ago, I have had 3 girlfriends, the last and the current were/are pretty serious. Of the 3, none of them bat an eye at my need for a catheter. All of them have ben understanding. I agree with graham, if they have a problem with it, they aren’t worth worrying about. I have opened the v conversation myself, by just saying “you know we have ben getting close, and I feel like I can trust you with even very personal things…” This way it focuses more on the fact that you trust them than something you are worried about… Make no mistake… I had the same worries you do, but it was always unfounded.

    Good luck,
    Craig

48. Anyone know of a place to buy a leg bag cover? I am in the US and can’t seem to find a cover for my leg bag on †he web. Thanks.
    -Leslie

49. Leslie: like these? http://ezlifesolutions.com/Purchase.html and http://www.llmedico.com/n/one-leg-pants/ There are many different types of covers and and even specially designed leg bag clothing. Why not make your own cover, here’s some slip covers with toggle draw string my Mum and carers have made for a 2000cc drain bag. I even have a Morrisy one lol, one of my carers designer sunglasses came in it.

    
    

50. Thanks for the links and info Graham. I’ll check them out!

51. Hello, again, Graham & Members!!
    I continue to have immediate pain relief with Rx Librax.Medicare & Medicaide will will not pay for it – a benzodizepine. Roche sold it to Valiant, which has an ”assistance program…” if 1 is not on M’care/aid. RATZ! I’m hoping they will pay for the generic/chlordiazepoxide-c
    lidium. The nursing home will pay for merely 2 more weeks. YOUR SUGGESTIONS FOR HOW TO PAY FOR EITHER ARE MOST WELCOME!!!!!!!!!!
    Memorial weekend… Sunday is for honoring those who made this conversation possible… Monday is to celebrate the quality of life they have given us… Bless you all, too…
    Lily for Walt

52. Thanks Lily and Walt glad to hear ur both well

53. Hi Graham,

    I hope you can help me with some advice. My boyfriend has MS…he’s been a bedridden quadraplegic since I’ve met him. He had a motor vehicle accident about 13 years ago and since that time was unable to catheterize himself…so, He had a urolume put in place about (12 years agO) Prior to that he used to catheterize himself three times a day. When he arrived at the Long Term Care facility the staff would use a condom cathetar to rid his bladder of urine…but for the past six years or so he has been using a Foley Cathetar. His UTI’s have gotten so severe and he has gone Septic many times over the past three months.

54. cont. hmm I must have pushed a wrong button on my computer.

    The doctors have told him that they have him on the strongest antibiotics possible and that they are fast running out of help for him. On one of his most recent transports to the hospital the doctor on call wondered why he had to be on a Foley Cathetar? The Doctor checked his protate and said that it was small enough so he didn’t see why another type of cathetar couldn’t be used. Now, he mentioned to his nurse today about the type of cathetar that one could use intermittently throughout the day but the nurse said that a SPC was the best for him. Finally my question…the reason his nurse (perhaps) may be opposed to using a cathetar three times a day is that the Staff are SO BUSY!! We definitely have enough money to pay for extra care if he needs it, but, I was wondering which method of catherization would cause the least amount of UTI’s…I’m sooooo scared and worried for him.

    Thanks, LInda
    PS…Love all of your input on SPC

55. HIIIIeeeeeeee Graham. It been a while. Been so self absorbed i have no time for myself!lol.. I think i fell in love with Emma. She’s 1 of only a few that says that having her spc changed drives her to drugs. I take drugs, not sedative to have mine changed and they don’t work. It is still the worst pain this chronic pain person ever feels. Espsecially if i am carrying a lil infection. I am on the infection a mth club. 12 so far. I need to chg urol. I need to chg urol. I am trying to convince myself. I go to pain clinic and they give me versed just to give me a spine injection. Why can’t they do that to chg my Cath.? I honestly can’t stand the thought of it one more time. I go for another inj tues and am tgoing to beg them to give my nurse something for nerves and PAIN (that works). I have one good wk a mth and its not the wk they are chging it. I’ve thought of flushing it w/ lidocaine before the chg, what do u think? I know..u will say no..u have to..its a public forum. Will they commit me if i refuse to let them near me to chg it. lol Its been so long since i wrote, sorry just to bitch. Is i far better to have a million lil bitches in life or one big one like mine i wonder.?
    Thkss Ronna

56. Hi Linda, silver alloy (silver coated inside and out) and fully silicone catheters are worth trying when money is no problem. Statistically uridomes have the lowest UTI rate as they are external, followed by CIC (Clean Intermittent Catheterization) passed either by urethra or stoma, then IDC (Indwelling) or SPC (Supra Pubic) closed systems which carry equal risk.

    Recently I read a document published by HICPAC (Healthcare Infection Control Practices Advisory Committee). They conclude sterile practice as the number one critical factor in catheter related UTI prevention.

    An estimated 17% to 69% of CAUTI (Catheter Associated Urinary Tract Infection) may be preventable with recommended infection control measures, which means that up to 380,000 infections and 9000 deaths related to CAUTI per year could be prevented.

    The findings suggest a small benefit to using silver-coated catheters over standard latex catheters. This was based on a decreased risk of bacteriuria/unspecified UTI with silver-coated catheters and no evidence of increased urethral irritation or antimicrobial resistance in studies that reported data on microbiological outcomes. Differences were significant for silver alloy-coated catheters but not silver oxide-coated catheters.

    Silver alloy-coated catheters carry less risk of asymptomatic bacteriuria compared to standard latex catheters (control latex catheters were either uncoated or coated with hydrogel, Teflon®, or silicone), whereas there were no differences when compared to standard, all silicone catheters.

    For patients with spinal cord injury, there is some evidence suggests not using indwelling urinary catheters, that is IDC or SPC, of benefit to lower UTI incidence. Although this was based on the decreased risk of SUTI and bacteriuria in those without indwelling catheters (including patients managed with spontaneous voiding, clean intermittent catheterization [CIC], and external striated sphincterotomy with condom catheter drainage), as well as a lower risk of urinary complications, including hematuria, stones, and urethral injury (fistula, erosion, stricture).

    Very low-quality evidence suggested a benefit of using a closed rather than open urinary drainage system. This was based on a decreased risk of bacteriuria with a closed drainage system. One study also found a suggestion of a decreased risk of SUTI, bacteremia, and UTI-related mortality associated with closed drainage systems, but differences were not statistically significant.

    Sterile, continuously closed drainage systems became the standard of care based on an uncontrolled study published in 1966 demonstrating a dramatic reduction in the risk of infection in short-term catheterized patients with the use of a closed system. Recent data also include the finding that disconnection of the drainage system is a risk factor for bacteriuria.

    What the hell does this all mean Graham? Well, while the reduction in UTI incidence rates may be small they do exist. Any reduction is better than none, as litte as a 1% reduction in UTI incidence means 90 lives per year saved. Use the least invasive, least UTI causing, bladder management method you can facilitate. Sterile practice, silver alloy-catheters and antimicrobial/antiseptic-impregnated catheters, are of benefit in reducing UTI. And that’s only catheters — in many cases — drugs, diet, lifestyle, environment and other factors can also be adopted to reduce UTI incidence rates.

    I may produce a series of articles based on the HICPAC findings and other sources, to expand on best bladder management systems and practices, as many of you seem to suffer problems, and may benefit from the discussion.

57. Hi Ronna, nice to hear from you hun. Filling your bladder with Lidocaine is not something I recommend, not because of an open public forum, because I doubt it will be of any significant advantage. Lidocaine is a topical treatment intended for external use only — on the skins surface — around the catheter site and applied liberally to the new catheter to be inserted. It is my understanding Lidocaine should not be applied to any organs and under no circumstances should it be applied to the brain.

    What you may find beneficial is Botox. Botox injections to the bladder not only numb they relax the bladder muscle. The effects of Botox last 3 to 9 months depending on the individual and dosage. The spin-off benefit is effective reduction of spasmodic pain and other problems associated with over-active bladders. Please don’t purchase dodgy Botox over the internet. The Craig Hospital has had great success using Botox, ask your urologist about the treatment.

58. Graham,
    I am new to the SPC. I got one 3 weeks ago because of complications from radiation of the prostate. My question is this. Should I continue with a SPc or if I have the option, should I do another procedure such as an ileal conduit with an external bag or a stoma that I catherize when necessary from this point on? Are there other sites that deal with others that have had these other procedures? I think hearing from actual patients who are living with these would be a useful piece of information to add to what the doctors say. They understand the techical aspects of what they do, but seem to miss the reality of living with the results.

59. Hi Bill, ileal conduit and stoma require an operation that is not always reversible and to my way of thinking is not something anyone should have done unless completely necessary. If you can get away with an SPC or IDC stay with it. If you can CIC (pass a catheter several times a day) even better. Whatever you can manage that is least invasive.

60. Hi. Im a 46yr old woman in Victoria Australia,i was diagnosed with a fibroid of the uterus and HPV in the urethra and base of the bladder after the birth of my last son 15 yrs ago. After treatments and many surgerys over several years,including a hysto, (kept the overies)and stretchings,and one SPC for 6 weeks, i thought i was fine. But after 3 yrs my urethral stricture began to close again. After much thought and consultaion with my urologist, I have chosen to go with a permenant SPC. Ive had the original one in for 11 weeks due to the remote area i moved to in 2009. I didnt research the medical system here in Lakes Entrance and am devistated to learn theres little regarding Urinary problems. I ended up in the emergency ward and they put in a silicone tube that i now understand to be for kidneys??

    Anyway, I got put off the list at 8 weeks due to anothers emergency, but now im going in on the 9th June to have this changed to a Foleys with a flip flow tap ( eventually the tap on after a cpl of weeks). I have an infection, once so bad i was put on a heavy dose of Roxy… now im on nothing, and the tube had so much sedement in it the local nurse at the Dr’s surgery had to un-do the pipe to flush the line thru. Now ive noticed a strong smell of urine, and dark color in the morning. Im draining well over night, and drinking water, maybe need more than i do. Im a whiskey drinker, with coke, about one or two in the evening. Im trying the best i can to live with this, but i feel very alone. Sex is still ok tho, gently, but Im still scared of something dislodging!

    My husbands very supportive. Ive hit a low point in my life, coming from a great career which was very physical, to a quiet early retirement, doing little. Ive gained 4 kilo. Id like to swim again, but not sure i can do that now. Im a musician, so that keeps me going. Financially we’re struggling, Im on a disability pension, which is low. Im considering training in a new career with youth works. I wish i could be ‘normal’ again. Not as easy as i 1st thought it would be. As i said, I feel alone, but seeing this site has made me feel a bit better. Keep the communication going guys, its very important!! Would anyone like a chat buddy? :)

    Cheers… and all the best!! xx Gayle

    *removed email address for security reasons

61. Hello,

    I have a spc since a year. Recently i am getting white sediments which block my pipe sometimes. I also wash my bladder weekly. Can you tell me what i should take for my diet or any medicine which can reduce the formation. I am also using silver coated cathter as i read from your web site. How often should i change my spc? Can we go on flight? Should i keep the drainage bag open during travel?

62. Hi YA, laytex catheters like Bard and Bardex should be changed monthly, silicone foley (which most silver coated catheters are) should be changed every 3 months. Check the packaging your catheters come in. We cover medicines beneficial in reducing sediment, diet and flying with a supra pubic catheter in the article. You can close or open your drainage bag when flying no problem.

63. I have a concern and this wonderful posts’ comment thread seems like a great place for it, as it is active with plenty of input/output. Thanks to Graham for the excellent guide. I’m just an average human, no disabilities except my mind and my apathy.

    I’ve been fitted with a suprapubic catheter (Bard biocath aquamatic – latex with hydrogel coating) since April 2011, due to acute urinary retention. It was well expected for years, but anyway..

    I was due a catheter change in the last two days which is now happening on monday. I weigh 20 stones and am obese so my gut is well established. This obesity obviously will create more pressure shifts and the cath goes through more matter, hence more opportunity for irritation, I suppose. When I first had the cath. fitted I could feel a hard circular mass around the cath. I’m going to presume this was the tight fitting bubble, “locked” in place (At the time)

    Now, I’m getting strange feelings in my lower section when I stand up. It’s variable. The catheter seems to have shifted its angle from straight out to pointing down 45degrees. (or 135 depending on your orientation). Anyway, I thought that the bubble will always be in place tightly, maintaining a correct orientation.

    Last night, whilst researching various catheter related issues/guidelines, I found a site (which I won’t mention because it may taint my post with spam orientation) that made me think (a lot) that the bubble catheter is quite liable to shift around a bit too much due to a lack of anchoring on the outside. After all, what is there to secure the bubble location/tightness?

    Also, there is no hard bubble under/around the catheter….. so the compression has decreased considerably. Secondly, these strange new sensations that I can’t pinpoint. My urethra tingles when I get up (just tested and it happened as expected) It’s like a feeling that only activates when the pressure has been “lifted”.

    I measured the length of catheter outside my body and it is 340mm sitting or standing. The total length is 430mm which means 90mm is just past my skin and inside my body. Drawing that to scale looks like it’s fitting reasonably well.

    I suppose if my bladder has shrunk considerably it may be tickled by the end or bubble upon shifting one’s considerable mass. I also suppose that if I was able to keep a residual 150ml or so, then nothing would touch… (Can’t do that because the pressure of filling creates discomfort..)

    The problem is, the device I have seen apparently is able to secure the normally unsecured catheter end in a sensible way which is supposedly able to stop liquids leaking through the stoma. This theoretically would allow healing. My current status is that I’ve got constant but small amounts of thin mucus coming through and I doubt the bloody part of the stoma is going to be helped to be healed with that…

    I emailed the website of the “product” stating that it looks like its getting old and dusty, asking for an update on this wonderful product o.O I cannot find the device on any official supply site so it looks like it’s a dead product, even though I think it’s a great idea.

    Comments plz plz :)

64. Hi Andy, many use a Statlock to secure their catheter and tubing. It’s not uncommon for a two month old supra pubic catheter to have some bleeding and rawness that should settle in time. The angle change is of little to no concern. My concern is mucus, sounds like you have a site infection and that will certainly slow the healing process, cause tingles etc. Your doctor can take a test swab.

    Disability or not any bladder constantly drained is going to shrink. A flip flow valve or similar tap will create back pressure stretching the bladder, the discomfort may well prove worth it. Those unable to operate a tap or self cath have to take a drug like Ditropan to prevent the bladder shrinking to the size of a golf ball. You can imagine the discomfort and how hard it would be to get a new catheter positioned correctly then.

65. Thanks for your reply. I use a simpla g strap which secures catheter to leg. Sometimes I use tape at the halfway point. 5 weeks after the fitting of the catheter, I trialled a bard flipflo valve to allow the bladder to fill. Within a day I went from 500ml fills, with some discomfort to 150ml fills with lots of discomfort in my lower urinary system. It was so bad, I went back to leg bag since.

    There wasn’t any pain for 5 weeks, until I tried the valve. I have been damaged during the acute urine retention period, which was not helped by my herculean bladder, developed over 12 years of urinary obstruction (resistance training equivalent). Whilst I was waiting to be relieved of acute retention, my bladder was doing its best to sledgehammer blow its way through the restriction. I suffered some very bad spasms and damage due to the strength of bladder, which your average acute retention person would not equal.

    I’m waiting for investigation via urethroscopy, but I don’t have much enthusiasm towards diagnosis of strictures and probably a ruptured/torn/damaged tissue probably the bladder sphincter itself. I’m not on any medication, so I’m really lucky, as my left kidney was also well impacted during the hours of waiting for release.

    I can see that it would be handy to have an intelligent valve that only allows urine to be released at a psi range, equivalent to say 100ml. For me, it would keep my bladder enlarged, avoiding the possible golf ball syndrome, without causing the pain that 180+ml of urine causes, whilst still allowing for easy recathing.

    Dreams eh?? :)

66. wow Andy, poor bugger!… im going back in to have this changed and fit a flip-flo in 5.5 weeks. I weigh 80kg ( gained 7kg after i had to stop work), my bladder is apparently able to stretch to 500ml, in the past due to stricture it has stretched to 2000ml! THAT was painful! I hear you Andy about the tingling sensation, its like you need to pee, really bad!! Im ok now, but i hate that pain, so I generaly bomb out on panadol, cammomile tea, and a 2mg valium ( or 5mg)and by day 3 im ok again.

    I get floatys coming thru which is normal, slight bleed depending on what ive eaten…. did you know chocolate,capsicums,oranges (citric foods)and caffiene products can irritate the bladder? Explained why i had problems for awhile, now i limit my intake. Im a chef and researched foods/bladder…and my GP agreed with my find. I guess Ill know soon enough if the flip-flo is for me, for now im happy with the bag, but come summer, I want to tan my legs and wear shorts and a lay on the beach!

    A funny thing happened while i was waiting to go to theatre on thursday 9th… an older couple in the cubicle next to me were discussing the surgery, i picked up that he was haveing a permanant SPC put in, she says, ” damn! i meant to bring a spare bag!”, I spoke across and said ” I have a spare bag if you need one, i bought two with me”, the man then says, “what type of bag?” I replied “a leg bag”, he laughed and said “My wife meant a bag to put my clothes in!”, we all laughed and imagined trying to squish his pants in throught the tube! hahahahaha..funneeeee :)

67. Lol. Even winrar doesn’t do compression like that. When I was “released” from my urine burden at the hospital, I forgot to ask how much was drained, but I am curious. Drinking and eating after a 30 hour gap, was nice though…..

    Before the incident, I was obviously well aware what would happen to me, if the time ever came, that I couldnt’ urinate. Luckily , I was already a veteran in years of water restriction, so as soon as I realised I stopped any intake. I tried for 8 hours after the realisation, but it was locked up even against my herculean bladder. So then, it was the hospital and it took from 2330, when I arrived, until 1700 the next day, for my full release, via sp catheter. I did have one random urination of perhaps 300ml at 0200. I should have gone in earlier, but I was not really wanting to be so exposed and punctured with such trauma in mind……

    The first bladder scan showed 300ml at 2330 hrs……I was surprised at this. Anyway, 2 hours later I was jumping up and down and scanned again….. 999ml, which is co-incidentally the limit of the readout… he had used the wrong scan setting on the first go……..so I suffered 2 extra hours to near breaking point. I should probably try and sue their arse, but how can I justify that, when I was in the limbo of urination problems from 1999 and quite possibly caused untold damage to my ureters/kidneys/bladder/urethra. Amazingly enough though, I can still pump out 900ml of clear urine per hour, if I consume 3 litres of water on an empty stomach.

    I’m not bleeding into my urine…….even when I use a flipflo to test the bladder (which is rare due to the issue of course). I’d like to ask, if you had a stricture, then you must have been developing a strong bladder as well. If you did, did you experience the sledgehammer like spasms through the urethra whilst waiting for catheter? Any kidney pain? My left kidney was stabbing at the back and at the front, it was on fire or can’t remember so much now….fortunatley…… Don’t suppose you know what your average flow rate was? Mine was about 3-4ml/sec for about the last 8 years at least.

    I’m lucky enough not to take any painkillers…… :) and no more bloodshot-ish eyes from the straining. My only concern is this leaky hole. I’m drinking tea and water mostly. I only drink coffee for the flavour change, maybe one a week on average. I’ll probably just kick it out to observe.

    I should say, it could always be worse…. “It could always be worse”!!!!!! I hope your legbag is stab proof, being in the kitchens……..:)

68. An update. I had my catheter change today and the twinging that was happening when I
    a) sat down
    b) stood up
    has gone at this time (last 7 hours)

    Also, I note that the catheter balloon empty only produced 7ml and I presumed, with the nurse, that 10ml is the start point.
    I suppose
    a) Not all water can be recovered from the balloon, does it seem possible that only 1 or 2 ml of extra balloon would keep it more “lodged” in place??? It’s not going to make much of a bigger sphere at all but perhaps it would be more solid….maybe that is more relevant.

    It came out easy and the new one went in easy. yay. I wondered if cuffing would be a problem and lo and behold, the deflated ballloon still occupied about a 2mm cuff all round.
    I noticed that this aquacath only had one year to go on expiry. Strange as guidelines say 3 years.

69. lol Andy. Im due for my second change..awake!!… in 6 weeks, Ill have to have a valium for that, pain and I do not go well together! God knows Ive endured enough of it! Im no longer cheffing, after 25yrs, it was time to step out due to this, i cant lift over 3kg, or move around too quick, and my fears in life now are falling over and slipping! But, I am going back into assesment and training, so probably teach in a TAFE or something. My Dissability support want me to try the Stephanie Alexander kitchens in schools, but that requires digging dirt, another thing i dont do! lol
    Andy, my problem started almost 16yrs ago… I fell pregnant with my son, had a few UTI’s, one made me bleed, Dr treated it with anti’s. After i had Ben, i had more bleeding, and so much kidney pain, L&R, as well as a big tummy. It killed when i wee’d! So numerous tests revealed i had cancer in the urethra, and bladder, BUT.. when i had the urologist AND a gynie go in on the same surgery,they found a tumour the size of a grapefruit behind the uterus! it didnt show up on the scan!! So, i had a hystorectomy on the spot, at 31.I woke up in a mess of tubes, wires, machines and bandages!My husband was beside himself with fear.I had it explained to me what was going on, I said “shit”… and took it all in. Ihad several ops on the urethra after that for about 4 yrs, as peeing hurt and the cells came back!Urethra’s on women are small, I had some of mine removed, and had the muscles cut, and diathermed, and crocheted!! you name it! i had it! Kemo didnt work! eventually, I became good! I was voiding normal for about 3 yrs, then bang! my urethra closed after i had sex one night with my husband. More hospital, more stretchings, more pain, 3yrs of normal, and BANG, again!I had a SPC put in for 6 weeks, had it removed and a garden hose put in my woo-hoo! Well! didnt that just about kill me! ( so much pain Andy, SOOOO much pain!)That came out after a week, and i was ‘normal’ again, up until january 2011. We moved from our home of 22 years to a gorgeous sea-side town of 3000, so i could relax, and get on with life. Then, i noticed a stinging when i wee’d, i collapsed in tears on the flor, I knew what this was about, and I knew damn well i couldnt go through with it again. Andy, I contimplated the obvious… but my husband and my son ( he’s 15) need me regardless of this. MSU’s came back negative, and within 4 weeks, i had narrowed down to passing 20-50mil every 10-15minutes, all through the night as well, i averaged about 4 hrs of broken sleep for weeks until i was able to be seen! The Dr said as long as i pass something… blah blah blah!!!
    My husband rushed me 35min away to the hospital ( we dont have one in our town)and finally they put in a SPC.. wrong tube, but still, i had one and relief!!!!! The tube was silicone, and for a kidney, it was in for 16weeks!!! As the urologist only visits every now and then! Ive been so unwell Andy!! Thursday last week, it came out, bladder washed extensively as it was putred! I could smell the toxic guk from the outside! the tube was beginning to break down! I awoke to no pain, no smell, and calm.
    Yesterday, back to hospital, slight block, ok now tho, but that awful tingling pain!! I hate that!Its not as bad today… ( she says with baited breath), but as soon as i have suger, it niggles. Its because its still raw in there, and the pipe is draining upwards, so i have to keep the res at least full so it will drain better, so yeah, i try and drink 3 litres a day ( i feel like a fish!lol). I know its going to take time, a long time before im comfortable with this. I have to adapt and adjust my whole entire life!! Im so damn lucky my mans beside me 100%. I often question that, and he says ‘shut up, i love you and im not going anywhere!’Andy… Our added fixtures are only understood by those who have them, and Im glad I found this chat site to vent. Shareing is Careing my friend! xx

70. ok… this hurts!! im still getting the feeling like i need to pee, my bladder has a fit with spasms, then goes calm, urine looks frothy, like a beer with a head on it! there seems to be a big bubble of air in the line.. is this normal?
    its been doing this all day.Once it spasms ( and i feel like im going to wet myself!!!) it seems to release fluid through the tube into the bag.I went to the hospital the other night with this problem, Dr said its ok, its still draining.God i hope this pain settles soon!! I know its only 4 days. Oh well, more valium and a lie down. Im worried about it blocking! I had l;ots of ‘stuff’coming thru the line in the last two days, man, they must of really raked me up in there!

71. Hi Andy, it’s quite common for osmosis to occour with catheter balloons. The liquid inside being under pressure permeates the silicone rubber leeching into the bladder where it does no harm. I warn of this in the article and suggest checking and if needed top-up with sterile water every four weeks.

    Hi Gayle, large or small, air bubbles are common and generally cause no problems. The symptoms you experience describe UTI (Urinary Tract Infection), or you may have an “overactive bladder.” The urge to void and spasms can be treated with a drug like Ditropan or Enablex as mentioned in the article. First I would ensure I’m clear of any UTI and wait a little while. The drugs for overactive bladder can cause many side affects.

72. Graham, I have had a SPC cath for about a year. I have MS, it was first put in due to bladder problems being able to urinate or urinating before I can get to the toilet. I had a 3 week period where I only had to use my plug, but in the last month or so I have been unable to urinate out of my urethra when I need to go at all. Now I feel like I have to go and can’t but on my way to or from the restroom my bladder empties itself out of my urethra all over my clothes. I also retain urine. Anyways my neurologist was wanting to know if this is caused by my MS I am not sure. I love the belly-bag, my Urologist says they dont drain very well. I ended up buying a whole box of them. Recently I have been unable to use them, they don’t drain at all. Anyone know what may be causing that??????? whenever I think I have a UTI my stomach hurts, my bladder drains itself, I have to go ALOT and I just feel terrible. The doctors tell me I don’t have a UTI, WTH!!!! Any advice is greatly appreciated, thanks!!!!

73. Hi Nicole, when did you last change your supra pubic catheter? It sounds like it’s blocking either from sediment or the draining eyelets at tip of catheter are pressing against the bladder wall. Another possibility is bypassing, where your bladder shrinks forcing the catheter tip down your urethra, unable to drain, the bladder fills until pressure forces urine around the catheter, some escapes via the catheter, the rest via your urethra. All three can cause the urge to void (pee).

    Change your catheter and if you still have the problem you’ll need to have an ultrasound or cystoscopy (camera up ur urethra) to see what’s going on. I am not a neurologist but wouldn’t say it’s caused by MS, it’s more a consequence of MS caused by a problem with your supra pubic catheter. If your catheter was working correctly the episodes of incontinence (due to MS weakening your perineal muscles) would not happen.

74. I have been to a urologist for burning when I pee. They did a bladder scan in the office. They told me that my bladder had a lot of urine still in the bladder after urinating twice at the doctors office. They put in a foley catheter so the bladder would drain. They also put me on flomax. I have read that an enlarged prostate can cause the bladder not to empty completely. (aka urinary retention). The Urologist has not checked my prostate yet. I find this strange. How does he know that I have a an enlarged prostate if he hasn’t checked my prostate? I had the foley catheter removed last week. My stream was still weak. About a week later I had abdominal pain. I went back to the doctors office again and they told me the same thing, the bladder was not emptying, and they put another foley in. I am getting tired of having catheters put in and then removed every other week. My uretha feels sore after wearing the first foley. It hurts like hell every time they put a catheter in, and it burns for several hours until the pyrdium kicks in. Why do they want to remove the catheter in the first place? If the bladder is not draining completely, why not leave it in. I don’t know if I can continue to take the flomax, because it causes me to have dental pain and bad headaches. I also have IBS and Levator Spasms. Levator Spasms are spasms of the rectal muscles. These muscles are in a constant spasm and it makes you feel like there is a golf ball in the rectum. The Levator Spasms and bladder problems are driving me crazy. I have an appointment with the Urologist again and I will tell him to check my prostate for enlargement. Why did he write me a prescription for flomax, if he didn’t check my prostate to see if it was enlarged. Even If he doesn’t check my prostate this time, I will find another Urologist that will.

75. Joe, I am incapable of commenting on your problems, but if you are looking for a new urologist, check out healthgrades.com. You can do a search by zipcode and get some useful data on the doctors available close to you. Good luck and God bless you.

76. Graham, I get my catheter changed every 3 to 4 weeks, my next appt is Monday. Just trying to figure out why my belly bags went from working to not working, I have even tried using a brand new bag. I thought after my last cath change that would help, nope :(!!!! Thanks for your fast response!!!!!

77. @Gayle……..You have my sympathy. I shouldn’t really complain about my minor issues.
    @Graham. I know you wrote about osmosis in your main post. TBH, I sort of discounted it because it didn’t make sense, even though I thought it must have an element of truth :) Anyway, so I looked for another reference to make sure and bosh, it was confirmed.
    Thanks….

    @Joe Firstly the IBS.
    http://digestive.niddk.nih.gov/ddiseases/pubs/ibs/#symptoms
    If I eat a few days of excess carbohydrate or certain, as of yet, undiscerned carbohydrates, I can become temporarily IBS positive with the following symptoms from the list above.
    Abdominal pain (feels like a large blockage passing through, then its okay; bloating (sort of), and discomfort (a feeling of unpleasantness in the bowels).
    diarrhea. This usually resolves in one or two passes, within one hour or so.
    Additionally, foul smelling flatulence.

    Depending on what you read, IBS can be mistaken for coeliac, partial coeliac, FODMAP positive, etc. What I do to resolve is eat a low carbohydrate diet, which I scale to my energy needs. When I go low carb, I lose all gas odours, bloating, diarrheah, pain, discomfort, permanently. I’m not saying that your IBS is false, but it seems that some doctors like an easy way out and IBS is a great catch all for “get out of my office” responses.
    Additionally, there was a well known tv doctor in my country, England, who was “diagnosed” by a “specialist” as having IBS. 5-6 years later, after multitudes of suffering, he was confirmed coeliac. I’m not quite sure how 2 doctors’ could get it wrong….. IT goes to show, if 2 doctor’s can’t get such a simple thing right, what chance do patients’ have?

    For my low energy needs, I can consume 50g of carb max per day, without any issues. Scale to your needs.
    You may find that some of your symptoms resolve. Then again, you may not. It’s just a bit of a diagnostic for you to try.
    __
    As for your LUTS (lower urinary tract symptoms), any impingement that causes an obstruction to urination, of enough resistance, will cause the bladder to become stronger over time. It can also become a bit dysfunctional.
    If your LUTS came on all of a sudden without any progression of symptoms, without any previous trauma, then I don’t have any suggestion.
    If you felt the symptoms over a longer time, say many months, then urethral stricture or prostate issues OR (another obstruction to urination) might have led to bladder dysfunctionality. I know very well the symptoms of chronic urinary retention, bladder response (hypertrophy) strain pain and burning feeling of urination for years…..

    As for flomax, that seems indicated for bph, but your doctor did not think to even mention it? Bizarre. Perhaps there is an off label use for something else. Either way, you should be informed.
    Did the catheter allow you your original flow rate each time?
    A reduced flow rate, of which I had 4ml/sec for many years, will give you bladder hypertrophy for sure as well as all of the typical problems that comes with it.
    Use a marker pen and mark a “disposable” vessel with 50ml marks, so you know how much you are urinating.
    Count the seconds and find your average flow rate ml/sec.
    Have you had any comments about infections, prostatitis etc?

    The pain of urethral catheterisation would be caused when it goes through the obstructive areas, usually stricture zones, prostate, or even a screwed up bladder sphincter perhaps (that’s speculation)

    I was not catherisable unfortunately (emergency doctor, then surgeon, then urology registrar all tried, so I was done supra pubically.

    I would restrict your water intake when not cathetered and keep it 3 litres (as per graham and others’ suggestions) maybe more.. (more dilute, less concentrated)

    I wouldn’t really follow these bph medications if I were you, the latest data shows that they are not so great. Obviously, your mileage may vary.
    Until you have an optical urethroscopy you will not know what your cause is.

    http://www.merckmanuals.com/professional/sec17/ch229/ch229a.html

    Either way, don’t leave it unresolved, as you may end up in a really bad situation.
    You can ask lots of questions on the internet, but unfortunately, after a while, it can be the worst form of procrastination.

    Information is power though…. :)
    Every time they put a new catheter in they are increasing your infection chances, unless they follow 100% guidelines.
    I hope they use a good installation gel…… They use instillagel in England.
    Sorry for long post, people, but I try to leave no stone unturned. :)

78. @Joe
    Also, I just read up on levator spasms. I wonder if it’s possible that they can cause damage to the adjacent areas of spasm over time? I had a short look on the web but it’s a tangle on there.

79. @Nicole, poor hun!! I feel your anguish! Nothing worse than busting and you cant go, been there, still do sometimes, even with the bag in! UTI may be the problem, or the cath sits a little low in the bladder and iritates the urethra. I tried a belly bag just recently, didnt like it! On the BARD leg bag until 6 weeks when I have this changed and put a tap on, not sure how that will go either, but Im keen to try! Otherwise im ok with the bags. Ive had my SPC for 4 mnths now, but 4yrs ago i had one for 6 weeks then i was fine, now this is permanent for me, and im ok with it. Keep positive hun, hard to do i know, keep at your Drs about the discomfort!!

80. Graham, i have two questions.. 1. flying to QLD in january ( from Vic), any probs with air pressure on my cath? Ill have the tap in, should i switch to a free drain for that? 2. Im hanging for a lay down in the bath! or swim, as its a great form of excercise… can i do this? Is thre a device? Ill ask my continent nurse when i see her in july as well… she’s a bit ol school, but then again, new things are popping up often, i never realised there are SOOO many gadgets connected to SPC wearing! :)

81. Andy,According to what I have read on the web about Levator Spasms, they can cause pain in the penis,scrotum,testicles,and cause problems in the bladder.What causes Levator Spasms? Levator Spasms can be caused by long distance bicycle riding,long distance trucking,or anything that involves sitting for long periods of time.Some people can sit for long periods of time for 20-25 years and not have any problems,while others sit for 5 or 6 years and get Levator Spasms.There is a nerve that runs vertically down each side of the buttocks and then branches off to the rectum,penis,scrotum,and testicles.This is the pundendal nerve.When you sit a lot,this irritates the pudendal nerve and the result is Levator Spasms.Like I said earlier,some people will get Levator Spasms, and some won’t.I’m no expert on pudendal nerves,but this is the way I understood it.

82. Joe: I agree with Bill and Gayle, get a second opinion and ask why not or tell them to leave the catheter in if that works best for you. Are you in a wheelchair? I cannot see why you couldn’t leave it in other than lifestyle.

    Nicole: I don’t use a belly bag, of those here who do none have reported it as not draining properly when other bags do. Contact the manufacturer. I can only think it may be an air lock, sometimes drain bags that are old stock need a bit of pushing before they flow freely.

    Gayle: In the SPC article I cover flying and swimming, neither are a problem. You can use tap or drainage bag on domestic or international flights. Most use a bag on long flights to avoid needing go to bathroom, as you can’t have your wheelchair with you.

83. Hi fellow SPCers!! I havent been about lately coz I’ve been working on having a positive relationship with my disability and hence, my super pubic catheter lately. We are progressing well. At first, I was hoping to divorce my SPC with my new standing up powered wheelchair (thank you Permobil c500 – sorry to advertise but its given me a quality of life!!). But the realities of living with a degenerative muscle wasting condition is – well, you still gotta pee. What works well for me is high cranberry tablets taken every day; lots and lots of water, and a brilliant nurse to do my catheter change. Yep…I do have to travel 2.5hrs for the change, but heck, thats better than having some cowboy nurse yank out ya tube and give you infections, as well as damage your bladder…OUCH! And really, who wants to live on pain killers??? Not me.
    But in saying that, i realise that the Oxcytrol patches are brilliant for me to relax my over active bladder and at least I have loads of peace now. Phew. Nothing worse than a jumping up and down bladder.
    So fellow SPCers, may you lift your valves in peace and squirt the general public if they ignore you – together.
    JWTAS.

84. Small thought here. I have seen a few references to Bard leg bags by various commenters. I was given one on leaving the hospital and found it to resemble a water balloon held in place by rubber bands. The Hollister leg bag is made of heavier plastic and doesn’t seem to bounce as much and the straps are a lot more comfortable. Thank you, by the way to those who mentioned the Belly Bag. That is a nice option for more active days.

85. @JWTAS..love your approach to living with an SPC.. im kinda new at it, and today is my best day after surgery 10 days ago to remove a rotten one ( silicone tube initially…long story, but all good now). I have felt very alone in the world, and extremely down, but chatting here helps alot! Im not in a chair, but in the beginning i felt like id lost my legs, as i realised i had to go from all the active stuff in my life to doing none of it until i figured out what i could actually do! My work ended, my surfing ended, my jelly wrestling ended, my dancing ended, (kidding about the jelly wrestling…and the dancings alot calmer, lol), and sex has altered as well! i managed to vacuum a bit today, so that was a plus for me. My tummys not sore, and i had a bourban last night, so im getting a bit of normal back.I find i get an OAB if i eat too much chocolate or acidic foods such as oranges etc.. so i try to avoid these, except the chocolate, girls have to have chocolate!!! Anyway, nice to meet you, and hope to chat again soon, cheers! Gayle…PS, on the cathetar change thing, im due in 5 weeks for one, at a continence clinic, i assume they know what theyre doing, ive read a few nasty storys on changes, and it freaks me a bit, i think id rather not be awake when it happens, then others say its a walk in the park! a MS lady told me she said its no worse than getting poked in the belly button with a knitting needle, stings for a sec then its gone. ( rolls eyes and shudders!)

86. I love laughing about the unusual places I pee with the convenience of a pee bag. In a 10 km fun run race today, misty rain, freezing cold and pee bag full, we stopped and pissed on the inner city highway and no-one had any idea! How many people get to do that?

87. lmao@ JWTAS!! thats funnee… My 15yr old son gross’s out if he hears my bag ‘sloshing’ around as i climb our 16 stairs inside home, he says..”ewwww mum!! go pee for gods sake!” I threaten to pee on him and he soon shuts up! I tell him if he annoys me Ill wait til he’s asleep! lol
    We’re going up to the snow next weekend for the day ( its close by), Ive told my lot to just follow the yellow pee road to find me! lol.
    My hubby has offered to drill a hole in the floor of my car with a trapdoor so i can open up on long drives… ( could be a market for that, he’s Master tech for toyota).
    I usually find a car park near a garden bed or nature strip when i go shopping, to empty before and after, besides, its good for the roses…or is that lemons?? tomatoes?? And your right, no one notices, its like your doing up your shoe!
    JWTAS.. when your running, do you wear shorts with a leg bag? or trakkies?
    coz im trying to imagine me in my bikini on the beach…with a leg bag, hmmm, maybe not. Ill get a tap soon, then it will look like i have a penis! much better…lol

88. Hi all
    I have just had spc ‘fitted’ again, managed to do without one for nearly a year but can no longer self catheterise.

    Surgeon used wrong instrument, size 12, so had to make a second hole with a size 16 instrument during operation yesterday.

    I’ve had a lot of bleeding and clots and very painful. Keep having to change position to get flow going.

    I am taking extra vitamin c, drinking lots and lots, is there anything else I can do to encourage healing?

    I get a lot of muscle spasms, last time I had a spc they could not change it as my muscles spasmed and held it in place, I had a GA to remove it. This time they are talking about sedation.

    Any other ideas on how to get round spasms?

89. Hi Tamzynne, stopping spasm and activity will speed healing. You may be able to take Baclofen or similar anti-spasmodic medicine. Keep it clean dry and sterile. A teething gel or Lidocaine may ease the site pain. Drink 3 liters steadily over the day to keep those clots down.

90. Hi Tamzynne, If useing Lidnocaine, be very careful NOT to get it in the wound hole! I was advised of this by the continence nurse, as the opiumate in the gel isnt good if it goes into your blood system.I use to self cathetarise and had to squeeze lidnocaine in, but i bled as the stricture was too tight, and one time i felt very nauseas after it, so i stopped useing it. Ive recently had an SPC fitted after 3 yrs of not having one, mine is now permanent. Try a 2mg of valium, or 5mg if its really bad, they helped alot with the spasms to the point of it calming right down after 4 days.I have a 16 now, and my wound site is a bit mucky sometimes, some ooze, some stay dry, mine was also streched up under GA. Depending on what your bladder is like, ( mines traumatised alot from surgery), acidic things like tomatoes, oranges, vitC and the like can actually irritate the wall of the bladder and make it tingle, even a slight bleed, so can too much chocolate. Ive had 14 yrs of this to study up what effects me food wise ( chef of 25yrs also ), so a good feed of green veg, lean meats and white meats are good. Fish at least 3 times a week, especially Tuna or Salmon. Less carbonated drinks, and watered down cranberry, to lesten the vit C content. my nutritionist, GP and I agree that foods play a huge part in healing, the fresher, the better! Home made is always great! All the best hun! Gayle.

91. We went to the pictures this arvo… i was quite comfy, until half way thru realised i felt a bit warm on my tummy and leg.I put my hand on my leg to find it was WET!! My connector had popped off and i had leaked on my clothes! Lucky it was dark! Of course i went to the bathroom, cleaned up, recconected and went back to the movie explaining to hubby, who thought it was amuseing! Lucky for me i drank a heap of water today, it was clear and odourless! and I wasnt badly wet, just damp. LOL… bloody things!!!

92. The dreaded pop-off. My brother was helping to empty my leg bag once (no not on a highway JWTAS), I asked why one brown suede leather boot was darker than the other. “Because it’s full of piss numb nuts.” He replied, “Your tubing has come unplugged.”

93. hahahaha Graham!Some days i can hook it all up and not notice its there, other times it annoys the crap out of me and i waste a roll of sticky!lol
    Im thinking of permanently tattoing a floor plan on my tummy as to where is the perfect place to stick the tube! lol

94. Thanks for suggestions. Love the idea of tattooing a map! I forgot which way was closed on the leg bag valve so took a while to figure out why I had wet feet…

    Have 3litres measured out in fridge, just a couple of clots overnight. Will try lidocaine gel and will speak to docs about anti spasm meds.

95. Hi graham,
    I found your website by accident I have had an spc for 14 years and have always suffered with problems. I do not have a spinal cord injury but as a long term spc user I have encountered many of the problems your members have! At the moment my spc is leaking I am now on a size 20 standard size catheters it leaks all the time I don’t know how I can carrry on like this I have sevre arthrits & I am registared disabled I do use a wheel chair & I have a mobility scooter! I am battling kidney stones at present I have a pseumadonas infection & I have become allergic to nearly all the broad spectrom antibiotics I think there is only 5 I can take and one of them is only given iv! It does get me down I am averaging a catheter change a week & not every 28 days! I have botox injections every 6/8 months! Its good to know that there are others out there like me your website is great.

96. hey hun,hang in there, i know its hard to say, Ill probably be in the same position as you in time to come. At tmes you feel very alone, and feel that no one is listening… but thats where graham and this site come in handy, people DO listen! And its great comfort to know your not the only one in the world, its more common than i thought! Im not in a chair, mine was from cancer, mainly in the irethra, so i had strictures, and now have a perm SPC. IT and i are trying to come to terms with each other, even in bed it likes to hog things! I hooked up a night bag on the end of my leg bag as usual last night, and woke up several times tangled up in the thing! lol, i cursed many times at it to MOVE OVER!!!!
    Funny storys help you to see the lighter side of things, as heavy as it is to live with at times. All the best hun, and take a deep breath! Speak to your GP about how it gets you down, there’s a thing called a ‘mental health plan’ that they are responcible for for all their patients in a long term situation like this. They asses things, and bring to you the care you need, from social workers to councilors to groups etc. Im off to a physio gym group, 1st time today, to learn how to excersise with my SPC so as not to impact too much on my body to put it at risk of more damage. Im only 46, and Im looking forward to mingling with the older gen, theyve had them alot longer than me, Im sure they can teach me a thing or two ;)

97. @Gayle…I ‘ran’ in the 10km race in my whizzbang, rolls royce wheelchair.

    A really important point about your SPC is to make sure you have it attached to your body especially if you are an active wheelchair person. As my wheelchair now works to make me stand up (yipppppeeeeeee the world is so different from up here!) my catheter moves around internally. Because i’m standing up, then sitting down. Standing up, sitting down. As I’ve only had my standing up Rolls Royce (my nickname as apposed to the “Holden Ute” I had before), for approximately 8 weeks, my catheter really played up. So I do endeavour to use a flexi-track to secure my catheter tube firmly to minimize any movements. However, positioning it can be awkward.

    Graham, you mentioned earlier that taking anti-spasming medication over a long period has side effects. What is your experience here? Does this apply to the patches? I use Oxytrol patches which are like Ditropan but in a patch form. Taking Ditropan orally caused me constipation. Which of course off sets UTIs! :)

98. How’s standing up going? Is it powered or manual stand, JWTS?

    Anyone had nausea with Urispas? I feel constantly about to decorate the floor sick…….what about other types of antispasm?

    How did your exercising with spc go @gayle? Learn anything new.

99. I have had severe radiation cystitis for the last 4 month and severe bleeding.I had the prostate removed 5 years ago without any problems.The the bloody urine and pain started .After numerous foleys inserted all of which clogged from clots I learned to cath and irrigate myself .They finally put in a spc 10 months.They now want to remove it so they have me blocking it off so I can go normally but can last for about 8 hrs. max Plus I’m totallt incontinent The spasms are as bad as I have ever had them in addition I’m passing small bladderstones and the bag is full of white sediment with very dark urine Has anyone had any similar problemsI’m doing hyperbaric therapy so the bleeding has subsided somewhat

100. I have had indwelling catheter for about five years. I would like to get a super pubic but have been told that I cannot by Dr. because urethra is too stretched. Is this true or is there a surgery to fix this? If anyone has any answers please share with me thank you