Super Supra Pubic Catheters

1,776 thoughts on “Super Supra Pubic Catheters”

1. Yes, there are many ways to manage our bladders. Straight cathing is the preferred method over external or indwelling. I wish I were a candidate for the device that you push a button, get a electrical current to the nerves and then pee.

   Yes, Janet, it seems unreal that a hospital or nursing home would not have catheters. I guess you remember it was not that long ago we were told to wash them and reuse. gee.

   For the men: I used external (condom) catheters for a number of years in the past. Recently I was talking to one of the nurses at the clinic and she was telling me of a new, better type of external catheter they are now using.

2. Hi everyone I have had a spc for approximately 9 yrs. I have never had my spc come unconnected in the night. My spc is connected to a drainage bag which hangs on my wheelchair during the day, and on the side of the bed during the night. There is a long hose that keeps the spc connected to the bag at all times. The hose runs down my leg, and it is held in place by a “LEG” strap. The strap prevents the spc from becoming disconnected.

3. I have a spc, i irrigate myself twice a day with sterile water. My spc is changed “weekly” because of sediment. This has been taking place for quite sometime. I have had the spc for 9 years. Along with the catherer changing weekly due to the sediment. The sediment has been changing over time, sometimes snotty looking stuff, other times almost the consistency of very small grains of sand. At the present time my urine most of the time smells ‘ REALLY GROSS’, despite the fact of drinking cranberry juice and a fairley large amount of water every day. I am a paraplegic since 3-8-01. Along with my spc on my right side, i have a colostomy on my left side.

4. hi i m due to have a siparpubic catherter fitted in the next 2weeks i would like to wat i could exspect after surgery and how long would it take to heal and get back to normal any comments gratefully recived many thanks andy

5. Al, I have the same kind of sediment but not the foul smell. I have found the foul smell and cloudy color to be the best signs of infection. When I was instructed on irrigation I was told to mix two tablespoons of distilled vinegar with 200cc sterile water. After injection do not hold it in… Let it drain. I irrigate once a day.

   Andy, Welcome to the club. My SPC settled down after about four weeks. Fairly simple procedure. Good luck.

6. I have had my spt seen April, have a lot of pain. It came out Mon. nite. I put it back, called Doc. said thats fine so long as I got return. He mention bladder augementation. I really dont want that. What do you suggest I do. I also have the urine going normal and thru tube at same time. LOL

7. hello everyone hi grahem, its been a while since i wrote on here things have been up in arms with the hubby his become allergic to all antibiotics orally the only one that was left was merapanom intrevenously, untill friday just gone. he’s been in and out of hospital unable to self cathertarise due to infections and getting blocked with some gungy stuff his urine is so foul smelling yuk. the gunky stuff is constantly coming out he has an indwelling catherter in at the moment and its still coming out and smelling badly.

   we was told yesterday that they couldnt get rid of the infections the medication isnt working he had his last dose on friday just gone by saturday the gunky stuff and getting blocked while self catherterizing started all over again so we went to the hospital and they put an indwelling catherter in again he was admitted into hospital tuesday just gone as his not feeling well at all, his urine is showing massive infection so to date he has proteus sp faecalis e-coli pseaudomonas.the consultants came round to see him tuesday evening and said they would have to get a specialist in from another hospital to look at his notes and to see if there is any surgery they can do to help.which im not sure what they can do hubby is so worried they will take his bladder away what happens then will he have an spc?

   im so worried at this time with them not being able to treat the infections because he builds a huge amount of ressistance to antibiotics. his indwelling catherter is bugging him abit he says its very itchy is this normal? please if anyone has the same problem please chat with me as im going out of my mind as to what is going to happen, he has a kidney stone also which is only6mm in size they were saying that could hold some of the infection but then another doctor says no it wont because its not big at all. but they cant get rid of the stone because of all these infections being so high at the moment. when the nurses dipped his wee to see what was in i it changed straight away with infection protein and also off the scale for blood.

   hope someone can give me some advice. this has been going on for months and months and only now the hospital are bringing in a specialist which they say can take up to 8 weeks to put a plan together but surely my hubby is going to get really sick if this gunky stuff and the smell carry on. im making a complaint to the nhs and also im going to hit the media worldwide as this is a terrible situation my hubby has been in. please help anyone !!! xxxx

8. I hope you problem is resolved since August. My spc is driving me crazy at times. I am having a lot of bladder spasm and even rectal spasm. I hadn’t had before. I will check with the Dr. next week but havn’t had this before. I drank too much and passed out at Walmart. I guess green tea was the culprit. My Sodium got too low. Live and learn. The Dextrol does nothing to keep the spasm away. There are times i want to take the spc out and live with straining to go. I may not have the catheter deep enough as i do a lot of spasm related release. Go figure, can you?

9. Gemma, if his bladder must be removed there are surgical options like Spincterotomy and Mitrofanoff proceedures where a passageway is constructed using the appendix so that catheterization can be done through the abdomen to the bladder. Itching often accompanies infection which we know he has. Throw in a kidney stone and he must feel like he’s been hit by a truck. I hope the specialist can solve at least some of his issues. Hang in there hun.

   Ronna, when trauma occours to your bladder and SPC site, such as pulling on your catheter, increased spasm can be expected. UTI (urinary tract infection) can also increase spasm. Bladder augmentation should reduce the bypassing but I understand your reluctance, ask your doctor about increasing your Detrol dosage rates or perhaps try an alternative drug like Vesicare or Ditropan. Might be worth checking for UTI as well.

10. Graham!! Thank you for getting the word out about Morgellons – which seems to relate more to the urinary track than we 1st thought. Hmmm… The WHO (World Health Org) began a 1 1/2yr study last Jan., Germany is the 1st country to admit to spreading chemtrails,* thanks to Aunt Blabby here, more than 2% of docs in the World know of “IT.” >> See cherokeechas.org for skin/laundry/etc., SUPPORT PEOPLE getting fed up with living with IT in/out of you, etc. Of any 1 industry it is nurses who are hit the worst worldwide by The Plastic Plague [did Corning get product in IT?], aka MgD, aka NASA’s “alien” theory [bacteria on meteorites, & many more theories.

    My son climbed on the ‘net & found a woman dr. who has IT & uses NutraSilver. [Order on ‘net] The morning after – I SLEPT ALL NIGHT FOR THE 1ST X IN MOS!! – Walt woke me exclaiming, “It must be a miracle; only pink & white scars nooooooo open wounds nor even dry scales!! Yeah, yeah, Mom, so I took the full dose that night. But what terrific incentive to work up to it, again!!!!!!!!!!!! No disclaimer necessary; for you have a superb website, diplomatic/responsible way of diseminating info, & useful/compassionate groupies – now like us here. We hope you are flattered that we carry a highlighted copy of your www re SP pain +… to appointments to the urologists, who – inspite of the pain article on the cover of Newsweek [we take that article to docs, too] – seem NOT to know the VA is the leader in the pain mngt field, + Cleve Clininc has the huge new Glickman UROLOGY bldg.; surprise – nooo painfreeness there either!! But a couple of Dr’s no longer laugh @ my idea of a lil blue [size of a nephrostomy tube] nearly straight down from the bladder, between the legs. Yeah, yead, lots of nerves, etc. & kinda girlie BUT would you rather be in this kind of pain even a min. more?!! You guys design this. I’m not as motivated as you men must be, tho I’m seeking how to patent other, med-related products. Know a good atty?

    We wonder if any of you know the outcome of The Pain Society’ 1st SP Pain Workshop in 2010? What is the 1st name & E address of the little boy [c/o his father] who has the throbbing in the end of the penis. [I know from the ‘net he & Walt are not the only ones with misery in the crown jewel of the family jewels.] Walt would like to encourage this so young person on the Internet, especially since he gave up his biggest motivator @ 86 – volunteering as Quality Control + person @ the nearby school for 300 handicapped kids… for fear of “sharing” morgellons. Quitting really broke him up, so this young fellow would be a boon to Walt, also.

    THE best NON-gov’t www is >>> cherokeechas.org <<< I copy the letters from Dr Smith to "Collegues" & Dr Randy Wymore's to "Dear Practitioners" Dr's get copies @ apts with the others. Surely, you know as well as I Dr's in particular – acadamians that they are, tend to believe what is written. Read, "What ever happened to common sense?!!" Soooooo that's why we put trust into your endeavor & your following, Graham!!!!!!!!!!! "Foggy" thinking is 1 of 2-pages worth of symptoms of Morgellons. morgellonsymptoms.com I can add some more. Walt has a mere 2 paragraphs. Thus I apologize if I've been repitious; hopefully, tho, repeating will drive home some useful points. Let's think solutions, troops & kindest regards!! Lily for Walt, too – a WWII mostly @ Okinawa soldier THRILLED our troops are on their way HOME as of today!!!!!!!! PS – This really is my favorite www to type upon, given the black baackground, layout, simple-to-find cues – A+ – as well as the USEFUL info!!!!!!!!!!! * Jets ordinarily spew narrow, parallel exhaust. Chemtrails' exhaust spread out in more & more of a "V" shape. The latest/greatest suspicion is that it is gov't [or ordered by gov't] for the purpose of eventual DEpopulation… possibly at the hand of the Illuminati. Gee, there must be another Tom Hanks movie in this.

11. Hi Lily, I tried colloidal silver (NutraSilver is a brand name) several years ago. I didn’t notice any great benefit in reducing problematic urinary sediment levels at the time. That is not to say it is not of benefit, I suspect my sediment problems were due to factors other than urinary tract infection. I know several people who swear by colloidal silver as treatment for UTI and conditions like ulcers and morgellons. I’m glad to hear of your continued sucess with it. I’m thinking, it may be something Gemma’s hubby (see Aug 14) could try.

12. heyy yall, its been a while since i commented i know but i really felt the urge to come in here and says thank you to everyone in here and also to say keep positive. i had my surgery finally and no longer have any catheters. it was definitly a journey learning to adapt at 19 yrs old and learn to limit myself. i must say that im ready to get back there and run again but the docs are still telling me to take it slow, i cant blame them. With the suprapubic cath in so long i gained a very interesting scar my friends like to call it my second belly button :) any ideas on when/if that will return to normal? once again STAY POSITIVE. GRAHAM WHAT YOUR DOING HERE REALLY DOES HELP PEOPLE. for that i personally thank you.

13. Thank-you Joshua, your questions and comments have helped people here too. It’s you guys that are the real champions. For your scar have you heard of Bio-Oil? It’s available in many countries including USA, France, Australia, it reduces scar tissue and stretch marks etc. Cocoa butter works but isn’t as effective, you’re better of making chocolate and using Bio-Oil. All the best Joshua.

14. hi there i have had my spc for now two months and tonight i noticed that i may have a site infection, it is sore down there but my urine is clear i had a nurse check on saturday and she said it was still red but no sign of infection and i dont feel any symptoms,but due to my anxiety im a little worried please help me thank you

15. Onkar; you have two of the symptoms of site infection, red and sore. But that can also be caused by trauma, like pulling on the catheter. I would just keep it clean and as sterile as possible. If other symptoms appear, stronger smell, burning, or itching, then sure test for infection.

16. thanks graham, I got a nurse to check it out and its not an infection it just hasn’t healed proper so I was advised to go see my doctor.

17. graham my next question is can a site infection develop right away after being told i have no site infection

18. Onkar; as you may have read in the article, a supra pubic catheter site never fully heals. Due to that you will always be at risk of infection, anyday, everyday. But there’s no need to become germaphobic unless you suffer severe adverse reactions or have a pre-existing condition like HIV/AIDS that makes infections adversely detrimental to health. The fact you have not had an infection in your first two months suggests to me that you are doing all the right things to minimise your risk of infection. If the soreness you are experiencing becomes to annoying try a numbing gel like a babies teething gel or lidocaine.

19. Hi Onkar, have you had a tube change yet, or you scheduled to soon? I have had a SPC for over two years and my site flares up now and then despite all precautions. In addition to red and sore sometimes mine will have some discharge and look infected. Site swabs have come back clean, it is just as Graham said, the body trying to heal. It was still scary for me until I became used to how my body would now respond.

    I still go through that cycle and find my symptoms clear after a tube change. When in doubt I check with my nurse, and if I think I may be getting an infection I track my temp, fluid intake and appetite. Seems to be the top three questions my nurse asks. It will take some time to learn how your body will respond and how to best work with your health care team.

    You are fortunate to have found this site, when I encounter something new I go back and read all the old posts. Someone probably had the same problem, and the collective expertise helps me educate myself to be a better advocate for myself.

20. Graham, Wonderful work you have/are doing here! I wonder if you are aware of The Pain Society’s study on suprapubic tubes & pain and what the results were. Thanks!

21. No I’m not, there are several pain society’s, do you have a link Nikki please?

22. Does anyone else have a problem with pants riding down on SPC? Underwear, pajamas, anything with a waist band will slide down and rest on SPC. I wore suspenders for a month after surgery but have now given up the suspenders. Any advice?

23. Advice! hey Mike while i had my SPC i had to switch my trousers to anything with a stretch waistband. the trick i used that soon became a habit is you wear your pants/shorts Under the SPC site. and if you sit or lay down you pull them over the site. gettin in and out of my car was very uncomfortable especially in jeans so i wore jeans only on special occasions. using that trick made everything so much easier and comfortable.

24. At 47 I did not think I would be shopping in the maternity section for myself again, but looking for pull on pants all I could find was ugly and uglier. A saleswoman suggested I check the maternity section for a more fashionable selection.

    I was remembering the front panel pants and was likely quite rude. She was persistent, and showed me they now are made with a wide elastic band at the top and come in a good selection of casual to dressy. It is easy to roll the waist below my site depending on my shirt or wear it above and it stays.

    Pull on pants also allow me to dress myself and more safely pivot from chair to toilet. Any thing that adds to my independence and safety is found treasure. I secretly enjoy the reaction I get in that section of a store from other shoppers, this peri-menapausal woman in a chair must be lost!

25. Dear Mad Spazers!! Walt(86) is reeeeeeeeeeeealy angry… as am I… The worst part of the story is the pain for him, unnecessary costs, lost quality time from life, & relatioships down the tubes. Pun intended!! The recommended/usual protocolS, agreed upon by Walt, his case mngr/& boss & me/care mgr: SP CHANGE Every very 3 weeks Walt – who knows the lilteral ins & outs – changes the SP with me assisting. Hospital staff are amazed WE can do this. Who do they think was clever enough to win WWII?

    Walt is literally sick of the pain during changes + residual bleeding over 7yrs!! He goes @ his own pace, experiences minimal pain & rests when it occurs. There have been no hospitalizations after changing the SP tube. Pay him for this discovery; 3 balloons popped in 1yr, tho we were told, “They NEVER pop.” We carry 20FR, etc. in the car on trips, because ER’s usually don’t have one AND waiting in ER is always beyond time to reinsert – 20 min. Overanxious residents = pain!! 2 URINARY TUBES Walt now has 2 tubes… As the Co’s Trouble Shooter, he drove & flew ’round the World selling HVAC. Predictably, there were blood clots in each calf. The AMAZING Greenfield filter was installed. (www it.) 2 days later, during an ultrasound to check it’s placement, the technician exclaimed, “Did you recently swallow a football?!!” We all gawked @ a 2″ kidney stone, which caused NO pain, for it was stuck in the bottom exit. Dr. said, “In 2 hrs it the kidney would have burst & killed him.

    Thus the life-long AMAZING Greenfield filter was installed. (www that, too) 3 Halloweens in a row he had a 2” kidney stones stuck in the kidney’s exit, thus it did not move – nor hurt. #1 Immediate lithotripsy. #2 Ditto the next Halloween. #3 Walt swore he would not put on his Don Quixote costume, again, until he had the 3rd ultrasounded. BUT this stone shattered, was thus sharp & jagged, & slashed the ureter from kidney to bladder.

    He’s so healthy otherwise that tissue grew up the plastic ureter, requiring more surgeries to clean away The Plug Up. (Interesting… Per Bellruth Naparstek’s “Invisible Heros,” PTSD can start up when a person is told they will have their 1st surgery. Walt’s did!!) BEWARE… PSEUDOMONOUS bacteria sits in the bottom of both bladder & kidneys – like a swamp waiting for mosquitos to breed & do their painful-plus potentially deadly deed!!

    NEPHROSTOMY (KIDNEY) TUBE Every 8 weeks the neph tube is changed in Angiography. Usual procol:12 wks. But the pseudomonous bacteria apparently did not get the memo. Walt is the exception!! For safety sake, it should be mandatory to stay in hospital over night; saves pain +, $, labor +. Over-due treatments cost: 1st change cost 11 days in hospital. 2nd cost 19 days. Pain? Priceless!!!!!!!!!!!!!!

    Weird, but since the kidney’s exit has grown closed & no longer attaches to his bladder, why did >>EACH<> Q’s <> IDEA << Will food-grade diatomacious earth would demolish pseudonomous. I just ordered it. Hopefully, it will dry up lil Pseudy-O as DE does fleas; it dries thus cracks their waxy shells then also dries their bods, too, & internal parasites. BARF!! Even dust the house, car, etc. Just don't get DE in damp areas: eye, nose, etc.

    URINE RELATED? Walt has sadly quit volunteering as Quality Controller @ the local school for handicapped kids, as he seems to be a Morgellons carrier. I've been diagnosed & apparently have fibers in my urine, tho not blood. 1 of 2 cats seems to have symptoms, too. All 3 of us have passed kidney stones. Dr. Phil mentionned Dr. Eric Klein, Chief of Glickman Urology @ Cleve. Clinic – the whole new huge building – in 1 of 2 Morgellons' segments. Less than 2% of Dr's in World know of "IT," & 1/2 will tell "sufferer's" to see acouple of psychiatrists. MgD manifests itself in many ways, ie, do you itch & scratch sooo much you loose sleep or get infections? Have you picked lil black cotton-like fibers out of your skin? If so, www: colored morgellons photos, morgellons symptoms, cherokeechas.org = the main NON gov't site.

    Walt greatly misses volunteering with the kids. So he hopes to find solutionS – especially for the painS, so this will relieve the little boy crushed by the car that jumped the curb!!!!!! Days have turned into nights, again, thanks to the painS, etc. Would appreciate prayers, as we do for y'all!!! Lily, for Walt especially ZZZZZZZZZzzzzzz

26. having spc done in 2 weeks. alittle nervous, thanks for all the different comments. any women who would be willing to share any info would be greatly appreciated.

27. I am currently 26 female with nerogenic bladder had trouble with bladder back up as a young child, I am now since getting utis that won’t go away guessing since er cultures show bactirial infection give me levaquuinn find out 2 days later that and cipro aren’t strong enough not even 1 month in the hospital on iv antibotics worked I love my spc but hate not able to wear sandles or dresses or shorts. And also makes me feel very inscaure going out I might leak or someone see my tube. How do all you guys and women get through alll these silly fears? I’m more afraid of the antibotics not working then dresses this has been going on for 2 months. And I am extramly clean with leg bag night bag and soma site.. any ideas? Thank you all.

28. Hi Marie: As a guy I can only imagine how difficult it must be for you to watch other girls your age running around in bikini’s and sandals. To see tight clothes you really like and pass by lingerie shops thinking ‘I wish.’ Don’t give up, there is something for everyone. I love to wear jeans but they are hard to get on and sitting on the seams and rivets mark me. So my mum and a friend have made most of the pants I wear regularly. You could make a sleve of material to slip over your tube hiding it from plain sight a bit more. Make several color coordinated to suit your wardrobe! By stoma do you mean a supra pubic type urinary stoma where you only insert a catheter to drain your bladder frequently? A month on IV antibiotics is not a good thing. The best things to reduce urinary tract infections are listed in the article. Have you tried them all including something like Hiprex and silver coated catheters?

29. EUREKA, GREAHAM!! Rx this: CHLORDIAZEPOXIDE-CLIDINIUM 5 DO NOT USE DR. NOBLE’S NAME. “It SHOULD ELIMINATE the need for pain supresants &/or narcotics of ANY kind.” YEAH !!!! Walt & I thank ALL OF YOU for your input & Eing suggestions that are worth a try starting with relieving pressure by wearing ELASTIC WAIST BANDS… HERE'S TO A PAIN-FREE LIFE FOR ALL OF US & ELIMINATING THE TERM SPers !!!! Lily

    Thanks to Graham, Mad Spaz Club members have been of more help when it some to the pain!! And "urology professionals" now have more information to recommend to "SP patients!! Graham, how about a just plain SP website referring SPers to your amazing Mad Spaz Club?!! It's a great sign that Mad Spaz is the 1st to appear when one Googles SP, for the club is the most useful – by so than urology departments in 4 hospitals Walt's experienced AND EVERYBODYS' INFORMATON IS HIGHLY DEPENDABLE !!!!!

    Which reminds me to thank the caregiving wife in Autralia about "hitting the floor." No matter one's age, SEPSIS is definitely an emergency situation. The 2nd time Walt experienced sepris, thanks to our lil ole Aussie, I told EMS "He has S E P S I S & HIT THE FLOOR !!!! EMS called ahead to ER, who correctly said the same to Admitting, so the Dr. assumed (& we all know how to spelled assumed, right?!!] that's what should continue to be charted. This time the antibiotic IV was plugged in immediately – eliminateing life-threating timing !!!! KUDOS TO "JUST A WIFE IN AUSTRALIA !!!!

    The BUT is… Dr. Noble was the 1st surgeon to install Walt's 1st SP tube about a decade ago. The lil devils gave Walt the referred pain to the end of the penis – like a crockett mallet. Walt

30. Hello all, I have read alot, and now feel a little out of place here as I am copmpletely ambulatory… but here goes:

    I have had incontinence issues most of my life (I am 38). I wore diapers or other absorbant products for the better part of my life. A few years ago an aquaintance suggested a foley cath. I was uninsured, so I researched it, figured I could do it myself and ordered the supplies. ( I do not recommend self treatment, but without insurance you do what ya gotta do.. and for me it worked out). My girlfriend has changed it for me monthly until this past month as we split up. I have done it myself twice now (1st time and last time), and although I am not as skilled as she, I am successful.

    I have been on it it for 18 months now. It was life changing! I never felt more dignified, especially after I switched from a leg bag to a Rusch Belly Bag. This bag allows me to do ANYTHING anyone else can do… I snorkel, bike, run, work, cut firewood, etc. It has been working well, except the occasional UTI, which usually stems from inadaquete fluid intake and almost always after sex. It seems, like the semen causes issues, as it flows both into the bladder and out, and perhaps gives a path for bacteria?

    So, I started to wonder about SPC… My worries are… will it work with the Belly Bag. Rusch advertises that it can be used with SPC, but is there anyone with experiences? also. I am a truck driver, and I am very active and wonder about the activity levels posing problems… lifting heavy objects etc… Also, a hernia would void my medical certification, although the Indwelling Cath is fine with my certifying physician, so I wonder is there situations where the SPC causes hernia? Also, I watched a video of the procedure on youtube, so thought it was an outpatient procedure, and I could just go back to work again… So I guess my main question is, should I bother discussing with a doctor (I am now insured.. not gonna do it myself lol) or just keep doing what works pretty well and forget about it? It would sure be nice to have the tube NOT in my penis, but I can deal if I have to. I sure am not going back to diapers! Thanks for any input.

31. marie… I just read your post… I use the Rusch Belly Bag, but have a urethral indwelling foley, although the company claims it will work for a SPC. It is essentially a vinyl “fanny pack” that you wear around your waste over your underwear, under your clothing. it is INVISIBLE unless nearly full even under (mens) swimwear. skirts would definately be no problem, a swimsuit with the built in skirt thingy would almost certainly hide it. They arent cheap… $20 and last about a month, but SOOO worth it. you can jump on a trampoline with one and no one would be the wiser.

32. Hi Craig: It’s called Retrograde Ejaculation (RE) and it can contribute to increased Urinary Tract Infections (UTI). Permanent Indwelling Catheters (IDC) over time often weaken the bladders sphinctor muscle, it’s this weakness that allows semen, which would normally be ejaculated via the urethra, to be redirected to the urinary bladder. Having a Super Pubic Catheter (SPC) may reduce the incidence of RE and UTI and would definately give you greater sexual freedom and enjoyment. I believe an SPC works with many types of belly bags – Rusch should be fine. Hernia caused by SPC are very rare. Lifting running etc would be much the same event as with IDC.

    My concern is sensation. I know what completely ambulatory means but if you are completely able-bodied why haven’t you always changed it yourself? With full sensation the SPC may be a constant annoyance to you. IDC brings some pain and discomfort in either sex, and many fully able-bodied people use SPC with minimal pain and discomfort too, but for some it’s unbearable. Either way an SPC is easily reversible, so I’d say go for it Craig. Sorry to hear about your girlfriend mate, it’s tough.

33. Craig, I think you will find an SPC is preferable over an IPC. I did. From my experience I would recommend “Bladder Irrigation” after every ejaculation. Bladder irrigation is quick and easy and can be done with SPC or IDC. I have been irrigating or washing my bladder because of sediment. The VA does not offer sexual help unless you are married. I too have Retrograde Ejaculation and am ambulatory but do not have your strength… so I use a wheelchair most of the time. After reading so many good thing about the Belly Bag… I suppose I should give it a try.

34. Hi grahem and all the team.

    Its been a long while since i put a post on here only because things have been ongoing for my hubby, his still in and out of hospital still allergic to all antibiotics except merapenom. ok so he had a cystocopy and they found that he has a diverticulus bladder ive read abit about it but does anyone know anything about this.? he had that done and discharged from hospital 2 days later he was back as when he was trying to self cathertarise nothing was coming out. he had another uti which seems to be the same utis he has all the time proteus sp emberro efacaelis e-coli and pseaudomonas. not at all nice for him having all these. they have said its very risky to sort the diverticulus bladder out as they would have to make him a new uretha as well through plastic surgery he has a bladder 5 times the size of a male bladder the words were to him from the consultant/surgeon was its the biggest bladder they have ever seen.
    so he was on iv 3 times a day for 5 days and discharged again 5 days later back in again same problem couldnt pee his urine smelt really bad when it did come out, so monday just gone he has had an operation on his prostate (turp operation) they took some tissues away from the prostate and sent them for analasys and bored the protate tube out as they say it was very tight which could have been stopping the urine from coming out. his still on iv as he has e-coli quite bad but that didnt stop them doing the op. they also said to him with this op he might be able to pee again on his own (not something to say to someone who has been cathertarizing for 10 years) they built his hopes up alot and it didnt work he managed to get 50ml out his self so he was very disheartened. so was i. he now has an idc in for 2 weeks to give him a break from self cathertarizing as its quite sore down there at the moment. i really have tried everything for him and now feel useless as it doesnt seem to be getting better. i hope everyone is ok and wont leave it to long next time. :-)

35. Thanks for your input.

    Graham, She offered to change it for me as she had some experience years ago in a care facility, and it turned out she was better and quicker than me. I am able to change it, but for some reason I find its about the same as pushing a piece of cooked spaghetti noodle in.. lol… I did pretty good this past time, no urethral trauma… As for sensation, the cath does not bother me in the least. I have no pain of any sort, except for one time I yanked it a good one accidentally…. I was using a night bag in the truck, hooked to my seat, and got out of the truck, forgetting to hook up to the belly bag first… it was sort of like bungy jumping out of my truck with the bungy cord attatched to.. well you get the idea!

    ok, one question I didnt ask, and what actually brought me to this site, so I guess the answer is here somewhere, although I didnt find it…. I enjoy Scuba diving (shallow waters 60′ and less) Will I still be able to do this?

    Mike: I never thought about irrigating… I have the supplies, but have never used them… I never had a reason to… at least I didnt know I did… I drink alot of coffee and water when my pot of coffee is gone, since having the cath, as I find it keeps my urine flowing well, sediment free mostly, and overall good bladder health.

    The cath was a God-send for me, but it was 10 fold better after I started using a belly bag… the leg bag would fall and disconnect, cause pain from the straps, etc etc… The kind of cool thing about the belly bag is that I can actually use a mens room urinal, with no one noticing, as the valve is in a precise placement. for a wheel chair user it might not be as earth shaking of an improvement, except for perhaps swimming or wearing shorts, but I guess that would depend on the individual.

    Since I recently got insurance after about 4 years without, I will need to schedule an appointment with a General Practice Dr first I suppose, and then get a referral to a Urologist… or would my GP maybe be able to handle it?

    Thanks for the quick response! I dont get back home until Oct. 28th and I have a busy 4 days at home, then back on the road, so I am not sure when I will get all this done… hopefully this year!

36. Hi Craig, You can scuba dive with an SPC, unplug your drainage device and block the catheter end by pushing a stint (cone shapped stopper or similar) in. Back on May 21st I answered Adrian: You can swim snorkel and scuba dive with a supra pubic catheter. If you are diving deeper than five meters I suggest you tape over the site and catheter down to your stomach completely. Water pressure at 3-4 meters starts to compress the catheter balloon. Tape will keep it in place and may prevent water bipassing (pushing past the catheter) into your bladder. Also be aware at depths in excess of 7-8 meters the entire catheter will start to compress. Restrict fluid intake as much as possible one hour prior to swimming snorkeling or scuba diving.

    There’s roughly 3′ in a meter so 60′ = 20m. That is pretty deep. It would be great if you grab a catheter inflate the balloon, block the ends and take it down with you to observe what happens. I’d love if you could report your findings here. An SPC is not much different to IDC when scuba diving.

37. Hi all its me again. Thanks for the great ideas to hide the spc I am also still fighting utis and doctor called today confused as heck, I now have two types of uti at once is this even medically possible because my doctor says its extreamly rare. Anyone have the same issues? Thnks again Graham such a great info site.

38. Marie; thank-you for your kind words. Yes multiple infections can happen at once and that often makes them hard to treat. For example, if you have what is considered a low grade urinary tract infection as well as a nasty pseudomonas strain. The low grade infection can be treated with a general antibiotic while the pseudomonas requires a more specific antibiotic. The specific may not kill the low grade and the low grade will not kill the specific. Furthermore it is generally not advised to take any two antibiotics concurrently. Keeping in mind, I have no medical qualifications just vast experience, most doctors will try to knock off the nasty bug first.

39. Hi, I had my spc done on oct. 1st, the bladder spasms are terrible (I take enablex for that) my problem is terrible leakage at the site maybe once a day I get soaked, where I have to change my shirt and pants, Is this a problem or something that will stop?

40. Lynn: I just had my SPC re-sited on thursday and it does not leak urine, well only a trickle at most when exerting – speedbumps, leaning down head between knees. Neither did my first SPC installation 16 years ago leak volumes. After 3-4 weeks (now Oct 24th) it certainly should not be leaking or bypassing urine. Constant contact with urine can result in painfull urea burns and trying to heal in a damp unsterile environment.. that’s not good hun. I strongly suggest you go back and ask them to investigate or even better consult a second professional opinion. Quite often when the supra pubic catheter proceedure is performed they put one stitch on the skin right beside the catheter to speed healing a tight seal. That may be all you require.

41. Graham, my doctor is only gonna treat this low grade infection. Yet I am getting kidney pain and my spc burns/ bladder too. He thinks the rare infections are benifical. And make the good bacteria stay in check…..But I am getting a fever and even on levequin I’m still with pain/symptoms. He seees me soon, if the 2 of the utis stay I will have to go in 5 days for shots can’t miss a day so some without a car because of my power chair is a pain in the butt. Take care

42. Hello! Praise God there is a place to speak to others with this situatio. My Mom has had an SPC for about a year now and we have had nothing but struggles from the doc not getting her allergy to anything but 100% silicone catheters to them saying she shouldn’t medicate for a uti to a foul odor of urine ALL the time. This is what brings me searching the net for help. Thanks in advance for your help.
    My Mom is not suffering a spinal cord injury but had terrible incontinence that was both disheartening and embarassing. Her urologist told her about an SPC and she dove in head first without asking too many questions. After surgery she had terrible trouble healing because of her diabetes and weight problem. The site would not heal and the latex allergy caused the opening to widen. She now uses a large catheter to try to keep drainage from happening at the site.
    When I am with her, the smell of urine is really foul and I am sooo sad for her because people are so cruel. Yet, not to her face. I see disgusted looks and whispers behind her back all the time. I am at wits end with this odor problem as it is so bad you needn’t be very close to smell it. She has about a three foot perimeter of odor. No one seems to have any answers for us here in our home town and they tell us to just accept it. I feel there must be something we can do!

    Mom changes her clothes every day but because of her obesity she struggles to keep the leakage under control. We are considering a full urostomy but fear the fact it is irreversable. Can anyone help? I will look into the siver alloy catheters and possibly more frequent changing.
    Thanks again1
    Julie

43. Hi Graham, Went to my urologist, he changed the cath, switched med time around and I am thrilled to say I am now dry and the spasms are calming down, everything healing nicely. Thank you for your response. Your web site is so helpful…….

44. Thanks Marie and Lynn for the updates.

    Julie: Stong odour is a common sign of a urinary tract infection, have a dotor test a sample. Another common cause of strong odor is concentrated urine. I can see why your Mom may feel reluctant to drink fluids but it will only compound problems. She should be drinking around 3 liters (6 1/2 pints) steadily over the day. My other initial thought is rather than larger guage catheter a stitch at the site to tighten the seal.

45. Hi guys, I had quite an experience at urology last month. The doc tried to put a scope in, it took a long time and a lot of force. While he was peeking around the scope jumped out of his control, he was unable to reinsert. My nurse put in a cath to preserve the site. Doc could not reinsert the scope. He left somewhat embarrassed and muttered something about we would try again in three months. My nurse was smiling, he said he saw the problem with my tube changes. He now waits on my bladder, removing between spasms replacing the same way. For all of you that successfully change your own and say it just takes longer, you already know what it took my medical team 2 years to figure out. My spasms are strong enough to eject a probe from a surgeons grip, it makes sense to wait for things to relax to slip a tube in or out. Last 2 changes have been pain free! I love my nurses.

46. hello I have mobility but had SPC inserted over a month ago as a permanent fix & have experienced few problems ,dressings still applied every few days & always a bit bloodied but no greeness. I have started removing leg bag and using a shut off valve in order to have a shower or go for a short walk, then reattach bag and drain. I used to enjoy a social drink- lager usually in local bar at weekend and my question is would I be safe to remove bag and drink say two pints /litre and then drain when returning home ? Or would bladder not take this ? advice will be appreciated
    Also are there any garments to prevent pulls as opposed to tapes on my stomach which cause soreness discolouring etc.

47. Hello Brian, Your situation is much like mine. In the past I would remove leg bag, plug the SPC and then time myself at home when I began to have urges (spasms). I found I can go about one hour then I need to be close to a toilet. If I drink caffeine or alcoholic I need the leg bag. When I mentioned to the doctor I was plugging the SPC she did not approve. She was concerned urine could be forced back up to the kidneys. I have some feeling and know when it is time to drain. Therefore, I continue to make short outings without the leg bag.
    I too don’t like the stick-on stabilization devices and the leg straps slide down. At night I use my pajama strings to tie the SPC close. During the day I just try to be careful.

48. Hi Graham and fellow SPC users! Its been a while since i posted. Many cath changes since. The soaked sheets have stopped. I know more about pushing the bellow end up as far as it can go. Still having repeated utis. every mth at hanging time. Nurse does it 2 times then Dr. It is really the most painful process i have ever gone thru. I am usually infected at the time. I know the Dr. will start changing sooner and i could hardly stand that. I think i could do it myself and slower not pulling against the pain and then bleeding and leaking and spasming. Before spc i only had to push to pee. but no pain, no mess, no fuss. but Doc feels it was going back up to kidneys and would damage them. Believe me i was willing to take that risk twice. Why can’t they use a flouroscope to see if the cath is stuck to the bladder and seated right? I hear a lot of similar issues on here but the pain of changing the spc doesn’t seem to be a factor with most. It is like ripping my guts out. ! The Detrol for spasm doesn’t work for me. am i really going to have to tell the Dr. what he should be trying? Bless you all and thanks for the ear. Suggestions always welcome. I pray for your continued health Graham, as you are such a blessing.

49. Thanks again for helping out here Mike I appreciate it mate. I agree for Brian a valve would be fine for short durations. The max average male bladder volume is around 600ml and females 450ml. Depending how fast you drink 1000ml (1 litre) might be pushing things a bit. Perhaps you could empty your bladder in a cubicle to avoid people seeing Brian? I too don’t use a stat-lock or other stick-on devices but they are great for some. One of my carers brought me some wheelchair clothing brochures I’ll have another look through but don’t recall seeing anything like what Brian wants. I suggest having something tailor made.

    Ronna: Nice to hear from you and thank-you for your kind thoughts hun. It would be nice if Doctors and Nurses were more patient (ironic isn’t it) but as they say time is money. You have every right to demand better treatment. They can do as you suggest. Cystoscopy is the use of a scope (cystoscope) passed through the penis or vagina to examine the bladder. I had this procedure done recently confirming my catheter tip was poking into my right ureter preventing that kidney from draining effectively. They re-sited my supra pubic catheter moving it upward an inch or so and I’m slowly feeling better. I’ll make an update about it on the article when I can.

50. Hi thanks for your helpful responses Mike & Graham which I am taking onboard , SPC is a life changing experience for me but I appreciate my problems are minor compared to most users.
    I will also look at possibility of belly bag you previously discussed as this seems less obtrusive/awkward from what you say than my leg bags . Further info appreciated.
    Thanks again for your help.

51. Hey just wanting to update, my super bug was finally fixed now just have a minor spc. Infection, I. Have my caregiver change my bardix laytex. Infection control catheter every 3 weeks and clean all bags once a week with vinager and clean the tips with an medicated wipes and take cranberry pills to prevent utis, for spasms I might suggest detrpan, or any other antispasmic for the bladder I take urell or predium for changes. Along with a bladder spasm drug really eases the pain and my dr recomeds a 1 day dose of prebotics after the change.

    Julie: the smell your mother is expriencing IS NOT normal. There should be no smell at all inless she might have a site infection, have the dr do a site swab. If they can’t help her she can always go higher up and report what the doctor isn’t helping her or get a new uroligist if things aren’t getting any better, best wishes to all and a happy new year.

52. Hey just want you guys to know how helpful your website has been to me. I have not posted alot, but have gotten many answers just by reading all the responses. I will be having my surgery to repair my urethra Thursday Dec.2. Ive only had to have my spc for 2 year and 8 months, so at the least I am excited about getting it fixed, but also a little nervous too. I’m sure the first couple of weeks are going to suck, but I know that I can handle it. Again thank you all for what you do, you have been a great help to me and many others. Will be checking back often, and will update you all about how my surgery goes.

53. Thanks Shawn, hope all goes well with your surgery. :)

54. Marie: To disinfect my bags I buy Lysol Disinfectant with Bleach in the spray bottles. Each time (daily) I remove the bag, empty and spray about seven pumps into the tube. Then replace cap to keep air out. I use a combination of vinegar and sterile water to irrigate the bladder. I agree, foul smell is a good indicator of infection.

    Shawn: Wishing you the best with your surgery on Thursday. I agree, this is a great site. Look forward to hearing from you.

55. Lysol is that safe to use in the bags? I used bleach on both bags and I was soaked they started leaking. I know water it down but it didn’t work which is why I stick with water down vinger. It seems to do the trick, I love my spc, the only down side is infections off. And on. And think I’m getting ready for my 3 year scope since I’ve had mine 5 years now. But its better then foley catheter. I also have pain in the site so I might have to have the site redone. Good luck all hope you enjoy the spc as much as I do. Happy holidays to all and good health and a happy 2011 new years!

56. i have just had one fitted (2days ago) and hey told me nothing about how to look after it this site is fantastic thank you i dont think i would of been able to read about sex and how it effects it anywhere else and thats what i was worried about! thank you for sharing your ideas and thoughts

57. hi iv had a suprapubic catheter fitted on the 3rd november, iv had a infection now that is cleared up, can some one tell me why im getting stinging sensation in my willy, as it has been now 5 weeks since op any help will be gratefull recived thnks

58. Hi everyone, I tried to post before but it didn’t go through. I’ll try it again. Alittle over a week ago my 85 yo mother had a supra pubic put into her bladder for a second time. The first time something happened when the doctor changed it after a month. He used a 18 instead of the 16 she already had. She had very little urine going into the tube and they had to do the procedure over again. Now it’s been aliittle over a week. She’s is confined to a wheelchair and when I get her up in the morning she is wet in her depends. It’s not coming from the site, it’s coming from her normal way of going. There is full urine passing through the tube not like before. I was wondering if anyone else has a problem not being dry all the time while having one of these supra pubiic? Any help will be appreciated. Thanks, Lori

59. Hi Lori: When our bladder sphincter becomes weak we leak out through the urethra even with a supra pubic catheter in place. I have this problem, although minor. My leakage is not enough to cause a wet spot but my shorts are often moist. I often wear a pad. It sounds as if your mother’s situation is much more serious. I wish her the best. Make sure she gets the diaper changed when needed. Urine will cause the skin to break down.

60. Thank you for responding. I will do that.

61. I just wanted to ask, how long does a spc site infection clear? I have to use gaze now because everytime I clean the site, I now bleed and am getting foul smell… and a lot of green slimy stuff that is usuallly covered with pinkish blood every morning, my caregiver did spc change and was worried cuse when it came out it bleed a lot. He was afraid he put thr catheter in wrong but still figghtinh this spc infection, any idea anyone when the site wil stop bleedig and green discharge?

62. Hi Lori: I’m sorry, I did not mean to sound so negative. Perhaps your mother’s problem is minor. Could the tubing be getting kinked somewhere? Is the collection bag located low enough? Could sediment be blocking the eyes of the catheter?
    Hi Marie: I have not experienced this. I look forward to other responses.

63. Hey guys, well I did not have my surgery yet, they just ran some tests to see what it was going to take to repair everything. The plan now is to have it in January, so I guess we will wait and see. My doctor said there is a doctor in London who has made great discoveries for ppl with spc’s, and that alot of what he is going to do to me, he has learned form this doctors work. So, I just cross my fingers and hope for the best. Thanks everyone for the well wishes.

64. Marie: I gather you mean a site infection. I suggest you go see a doctor. Green, bloody and smelly are significant symptoms of severe infection. Typically these will not heal themselves, antibiotics is the best course. As it has started bleeding, it might also be a good idea to have an ultrasound to ensure your catheter is positioned correctly.

    Mike: Thanks again for your helpful advice here. Much appreciated.

    Shawn: What is the name of the London doctor? I’d like to research and learn more from him.

65. I saw my doctor and had a swab test in Nov, was on antibotics for seven days. And aparently, he doesn’t want to over use antibotics and suggested neosporen. Am looking to find a new uroglist because I know there’s. An infection. Thanks for all the kind suggestions Graham.

66. Another question, I apolgize, other then catheterizing from the suprapubic site, using a catheter only when urinating, stright cath, is there any option to get rid of the catheter I’ve had for 5 years is there a surgery, I’ve read about a stoma, in the stomach but that means having no bladder I’ve. Read, and the other was to enlarge a bladder since mine is never clamed I’m thinking about needing a larger bladdder, my. Uro spoke of this once by using a part of the colon. Sorry to go abit into rambling. I will be seeing a new uro univsity dr and need some ideas I’m annoyed by the thought of having a catheter long term. Thanks, if anyone knows please share.

67. Marie: If you have adequate hand function you can pass a catheter via the vagina or penis to frequently drain the bladder, it’s called intermittent catheterization. You can then remove the old supra pubic catheter and cover the site, after 5 years it should take about 6-8 weeks to totally heal over. A stoma is similar only not through vagina, you frequently pass a catheter through a sphincter on your tummy to drain the bladder, which if needed can made from bowel tissue, the procedure is called a sphincterotomy. Knowing your full case history the best person to discuss all your possible options with is your urologist. Typically they will not operate until you are clear of infection.

68. I am getting botox for Christmas! It wont show, they are going to inject into the back of my bladder wall. The bladder spasms are more like labor contractions, they say this should help. I do well laying flat, but I want to get up in my chair, go places and do things. Has anyone else had botox for this reason?

69. thankyou again to actually cathertize myself isn’t possible due to a car accident I had some damage to neves farther then I had before so I will ask my uro for a ultrasound to see if the catheter is in the bladder. I don’t feel when I need to urinate so my bladder gets over extended and feel flu like and get a really high fiver that don’t pass I’ve had my spc in and out a few times so I know how hard it would be dealing with all that and I have small children they mostly see mommy in a chair or bed so I am going to be seeing a neroligist and hope something can be done cordnating care between a few drs might come up with a plan I can type but typing takes a long time so I. Hope they find which neve is effecting me

70. hi iv had a supapubic catheter fitted had my first change on the 23 dec im not getting on with it can some one plz give me some information if i have my supapubic completely removed will i be able to pee out my penis again like i did before i had it put in as im worried i wont be able to any information will be gratefull thnks andy hope you all had good xmas and a good new yr

71. Hi everyone! I wanted to share a health discovery I made recently that might be of benefit to anyone who has to take antibiotics or other meds for infections. Due to a chronic medical condition I have to take antibiotics every day…and most likely this will be a life-long prescription. For a number of years I have suffered painful digestive problems: diarrhea, cramps, weakness due to dehydration, and borderline malnutrition. I could not absorb any nutrients from food or nutritional supplements. I could eat a nice healthy breakfast and within two hours I would experience many of the symptoms described above. I saw a brief article in a health/lifestyle journal which mentioned a possible solution for digestive problems experienced by people who take antibiotics frequently for UTIs and other types of infections. Some early research has discovered that taking pre-biotic supplements appears to help replenish the good bacteria in the digestive system. After using pre-biotics for about three weeks, I have not experienced any digestive problems and I am feeling so much better. I take the supplement at least three times a day with meals. That being said, I’m not a doctor, and am just sharing my own experience. Check with your doctor first, but speaking for myself, taking antibiotics for years has wiped out my digestive system and taking pre-biotics has really helped me. Hope this helps anyone who has to take meds for infections!

72. Andy: If you remove the catheter your bladder will seal off quickly, often in as little as a few minutes. The site on your stomach takes longer generally 6-8 weeks. Times will vary according to how long you had your supra pubic catheter in place (not long in your case) and your health/age. Restrict activity and keep the site dry sterile and covered until it heals. You must consult your doctor first, an spc is not something prescribed for fun. You may not be able to resume your previous method.

73. hi graham thnks for the information are you saying i wont be able to pee threw my penis like i did before if i have the spc out as im worried i wont be able to many thnks andy

74. Andy: Only your doctor can answer that. “Not getting on with it” does not tell us much. I can only imagine you were given a supra pubic catheter because you were having trouble with your old method. So to go back to your old methed may just be going back to more problems. Best thing you can do is consult with your doctor.

75. Andy: Graham is much too smart to try to diagnose any of us or predict what will happen with very limited information. I think you may be dealing with referred pain. When nerves are damaged sometimes they try to find new pathways. When I had my spc put in I had very little site pain. However, I had increased sensation (burning & stinging) in the end of my penis. Gabapentin makes this bearable. As for voiding through your penis…I would think by plugging the catheter it would give you your answer. Andy, I have no medical training but wish you the best. I agree with Graham…Best thing you can do is consult with your doctor.

    Deb: Good info. I would add Yogurt.

    Laurie: Have you got the botox yet?

76. Mike: Thanks for the reminder on adding yogurt to the menu! I meant to include that, but my comment was starting to ramble on. Personally, I try to have at least one serving a day. To save money and improve my diet I buy a large container of organic, plain yogurt; then I scoop up single servings in small tupperware containers with fresh fruit. Tastes much better than the small containers from store. And easy to grab and go!

    Also, Mike, if I may ask a personal question regarding the Gabapentin which you have been prescribed…do you experience any shaking or trembling of your hands and/or arms? Sometimes there is a sudden jerking of the upper limbs. Just wondering, as I have seen this side effect and am wondering if others have experienced this problem. Thanks!

77. Yes, Deb, I have the symptoms you describe. There have been times when I did not just spill my coffee but throw it because of arms jerk. Recently I have had several test… MRIs of C, T & L… EMG & NCS. They found several problems but nothing to account for arms jerking. I’m on 4800mg Gabapentin daily and feel this is very likely a side effect of Gabapentin.

    I am now dealing with Shingles.

78. Mike: That jerking is totally a side effect from the Gabapentin! I work with some one who takes Gabapentin as well and he also experiences the classic “coffee toss” as well as cell phones, pencils, and anything else which can be held in the hand. Unfortunately, this side effect manifests even at far lower dosage amounts; so reducing your dosage won’t provide any relief. I did come up with some solutions to make life a little easier: coffee containers with tight lids, leashes on phones and other small items, etc. It’s still annoying.

    Sorry to hear about the shingles – a few years ago I had shingles myself. It was so uncomfortable, and I found it really increased my level of grouchiness! But that’s just me!

79. I just want to thank everyone for the advice given on this site! Graham you have started something that I think is just awesome. I wish I would have found this when I first got my catheters, it has answered so many questions that I had! I am 26 yrs old, and 2 months ago I was in an auto-accident that fractured my pelvis in multiple places, which in turn ruptured my colon, bladder, and tore my urethra all the way down; sounds similar to the story that Joshua Lee went through last year. I ended up with a supra pubic catheter, a foley catheter, and 2 nephrostomy catheters. I’ve got tubes coming out all over the place! I commend all of ya’ll that change your own tubing; I could never do it myself. My urologist tried changing my spc in his office the first time and I suffered a severe anxiety attack… just the thought of feeling the tube moving in my belly freaks me out to the point of hyperventilating! He also tried to change my nephrostomy tubes with sedation only, unfortunately also resulting in a sever anxiety attack. They couldn’t get me enough sedation to calm me down and do the procedure. I now have to be given general anesthesia to change any of them. The good news is I am able to walk again, last week I had my foley catheter removed, they changed my spc, and found out the damage on my urethra is fixable. I am scheduled for surgery the first week in Feb to hopefully reconstruct my urethra to working order once again. He is hopeful that I will only need the catheters for a matter of weeks after that.

    Now that I wrote you a short novel about my story, here is my question:
    Since my foley was removed, my suprapubic catheter is not draining as much as I would think it would. Granted most is drained with the nephrostomies before it even hits the bladder, but I am constantly feeling like I have a full bladder but cannot go the natural way nor is it draining in the spc. I spoke to my urologist this morning and he didn’t give me an answer or seem to concerned about it, but it is just uncomfortable and am wondering if anyone else has run into this issue?

80. Hi Tahra, I am very glad you are on the mend, you have a lot of work ahead. My body mind and spirit have different speeds and the most challenging part of managing my health is timing. You have a much more complex bladder issue than I have. Tell your care team everything and ask any and all question you have till you get an answer that makes sense to you. Polite and persistant at first, if you are not getting the info you need go with less polite and more persistant until you find the mix required to motivate the care provider.
    The constant full pressure without relief I feel is due to bladder spasms. I take meds for that and have my tube changed every 14 days. I hydrate, keep the site clean and constantly keep watch for signs of infection. The discomfort boarders a real challenge during a contraction, I take slow deep breaths and they subside. Lasts weeks tube change my nurse grabbed a warmed bottle of saliene from the OR and irrigated with warm fluids after he placed the new tube. This is a good new part of our routine. I have been irrigating with warmed solution at home and have a new tool for my care. When your health is challenged you are forced to become an educated consumer on your self, what your needs are and how they should be met. Some of us have needs that require constant monitering and treatment adjustments. Wellness is worth working for, keep us posted on your progress.

    Hi Mike- Santa gave all the botox to the moms that left homemade cookies. No word on when the VA will schedule my next procedure.

81. I use a night drainage bag–what causes it to turn a blue color after a couple of weeks of use?

82. hello graham and everyone
    its been a while since coming on here. my hubbys still going through a right mess. in and out of hospital every other week now. he has an indwelling catheter in now, but he keeps getting spasms every half an hour and it takes his breath away and he says it feels like his pushing down on the catheter, do you know what that would be? could it be a rejection?
    his in hospital at the moment as he has pseaudomonas auriginosa and e-coli his having iv antibiotic which is the only antibiotic his not allergic too all the others he cant have, he had a exploritory and they have found he has a very large diverticulus bladder which is causing alot of infection, they werent going to operate but have now spoke to us today after 14 months saying they may have to do the operation after all, the odds arent great for him as to 1 if it is successful or 2 if he is strong enough to make it through and the risk of infection afterwards because his allergic to all antibiotics. scary times. but if you could shine some light or someone that has the same thing with these spasms would be great because it really does hurt he said. i hope everyone is ok. :-) gemma

83. Josh: It’s called Purple Urine Bag Syndrome (PUBS). A fairly rare disorder where the plastic urinary catheter bag and tubing turn purple. PUBS is often associated with urinary tract infection. Once the UTI has been treated the discoloration of the urine bag due to the presence of indigo and indirubin pigments should cease.

    Gemma: The urge to urinate and strong spasm are classic symptoms of a common condition amongst tetraplegics known as an overactive bladder. Most find relief through use of conventional medicines that specifically target the bladder, Oxybutynin (Ditropan), Tolterodine (Detrol, Detrol LA), Solifenacin (VESIcare), Darifenacin (Enablex), Fesoterodine fumarate (Toviaz). Each drug has their own set side effects that often determine which one is best prescribed. Another more general antispasmodic drug Baclofen (Kemstro, Lioresal) can be used in conjunction if needed.

84. Graham, you amaze me. (PUBS) Well I now know the cause of purple and orange bags. My bags turn orange when I take Phenazopyridine. My everything turns orange, tears included. I don’t remember my color wheel, but the two conditions combined could be interesting.

85. anybody know any fertility clinics for me and my future husband to get pregnant. I did get my tubes tied but can do a reversal. What about him?

86. Hi Kelli, fertility questions are best answered on our “wheelchair sex after spinal cord injury” article. Use our search feature and please read the article in full. Male or female the success rate of tied tube reversal is much the same as in the general population who have had their tubes tied. If you need more detailed info please ask.

87. how many times can a bedside drainage bag be reused? who do u suggest buying them from. I know there are night drainage bottles, but I would prefer a bag. Please advise==Thank u.

88. As a long term subscriber Josh you may recall we’ve covered this before so I’ll put in bullet points. Urinary drainage bags come in two (2) basic forms, overnight and long term.

    Overnight: Termed overnight for clinical reasons (hospital use) the problems associated with multiple patients drainage bags soaking in one sterilizing solution are many. It’s cheaper to replace than spend man-hours tagging and cleaning used bags. In a home environment overnight drainage bags can be reused several times depending on plastic quality, basic drain bags with no tap can last 3 days or more. Plastic only being able to be bent a certain number of times before it cracks accelerated by the sterilization process.

    Long Term: The thicker the plastic the more robust. Leg bags are made from polymers including rubber compounds designed with one way valves flexible enough in a clinical environment for at least three months. Ideal for supra pubic catheter users requiring a closed bladder drainage system to prevent infection. Sturdy drainbags with a tap and legbags can be reused for three months to several years respectively.

89. I`m having trouble with my leg bag—when about half full it slides down my leg-no matter how tight I secure the straps–are there straps on the market to hold it in position without slipping?

90. Will the CATH-SECURE Dual Tab be as effective with a Supra Pubic Catheter as the foley I now have??? Tuesday is the big day………

91. Josh; you may just need to buy new straps. Other than sticky stat-lock or tapes perhaps a garter belt will help.

    Murray; It should be the same as it is currently, only the position changes a few inches.

92. hey-I have questions. My husband just had a SPC inserted in Dec. Things have been going okay. He has had a couple of UTI’s since the surgery. Now he is home from the hospital and is finding a huge urge to go naturally through his penis and is. This can’t be right! Dr. says fight the urge. But tonight he has gone at least three times. Did he have the right procedure? His initial injury was C3 -C5 compression. Not complete. Surgery was decompression and widening of brain stem. titanium replacing C3-C6.

93. Shamahoney; I moved your question here so we can better answer you. Sounds like your husband is experiencing what’s called an overactive bladder. New to Supra Pubic Catheters the urge to void is common and can be eased with use of drugs such as Ditropan, Enablex, etc as explained in our article above. The fact that hubby does actually void is of some concern. I suggest an ultrasound or similar to check 1. the catheter eyelets are free draining and not blocking 2. the bladder size is adequate eg +300 ml and 3. the catheter is correctly positioned.

94. What is correct position of catheter? Last year I visited my urologist and at the end of the visit we agreed to put in a SPC. Then he asked to let me look again. I pulled down my pants as he sat and just looked for a few moments. Then he commented he was just looking where to position the catheter. I have had no problems for nearly a year now. Tomorrow I have my annual physical with ultra sound of bladder at a different hospital. I wish I had the right questions to ask about correct position. Anyone with experience?

95. Hi Mike, there is no one universally correct postion. Everybody has a different body shape, bladder size, posture etc. After sixteen years with little problem my last annual checkup found the tip of the catheter was poking up my right ureter (tube from kidney to bladder) preventing the right kidney from draining properly. They re-sited my catheter an inch above the old site, now the catheter tip points down and on occassions pokes into my urethra (tube from bladder to penis/vagina). The primary reason for annual ultrasounds and abdominal xrays are to look for kidney, gall and bladder stones, other blockages, bladder size, and overall function.

    For correct internal supra pubic catheter position the catheter balloon should rest against the bladder wall at the entry point and the catheter tip should be free to drain, not resting against the bladder wall or poking into any tubes.

96. Hi Graham, I have been having what they call bladder spasms. I call them labor pains, as a mother of 4 I remember. I also only drain well lying down. When sitting or with movement the spasms take on a life of their own. When my care giver lifts me from my bed or chair for transfer I flood my depends. I also have intense right flank pain as an added bonus for some of the spasms. My doc says I am well hydrated show no infection and am taking detrol LA every 12 hours. I am given morphine like M&M’s. I am on a wait list for botox injections in the back of the bladder wall. He feels I just have a sensitive bladder. I didn’t the first 2 years. After reading your last post I question my doc’s dx. Hopefully when they get me on the table they will notice placement. I will print your experience and have my nurse take a look. My nurse is awesome, my doc a rude stranger. My best to you all

97. Hi Laurie, good to hear from you hun. You are right to worry about not draining when sitting up. That defeats the purpose of a supra pubic tube. I’ll explain with example. An After Hours (AH) doctor came to my home recently and changed my catheter. Her technique was exactly as I teach it, except for one crucial step. When replacing the catheter I pinch it between fingers right at the site/stomach, deflate balloon, withdraw catheter. Hold the new catheter at exactly the same length as old + plus one inch. Insert the new catheter until fingers touch stomach, inflate balloon, release catheter. You should see the new catheter slide out an inch to rest against the bladder wall. This gives strong indication the new catheter is positioned in the bladder correctly.

    My AH doctor had failed to take notice how much catheter was inserted in me. My carer the next morning held up an empty drain bag. As soon as we sat me up I could see the catheter was in way too far. With a gentle tug blood shot everywhere confirming the 10 cc balloon had been inflated in my urethra. I had the catheter positioned correctly in hospital, draining 918 ml (2 pt) from my bladder. I’ve said it many times, your kidneys do not like swimming in their own piss. Their job is to filter and expel urine, not soak in it. On the verge of renal failure (the #1 leading cause of death amongst quadriplegics pre 1960) I spent a week on IV’s fighting double kidney infections and severe blood loss.

    You are following all the appropriate precautions Laurie, and while infection free at the moment, not draining 24×7 is risking infection and possibly acute renal failure. All I can think of right now for you is to ask about a cystoscopy. Under a general anesthetic a camera on a flexible lead is inserted the natural pathway allowing medics to observe the supra pubic catheter in bladder when laying flat and in seated positions. Depending what’s preventing drainage, botox is effective for around three months, otherwise you may need a more invasive permanent solution such as different catheter type, or re-site of SPC.

    Exhaust all passive options first and don’t be afraid to ask for a second or even third medical opinion. As you know, I am not a doctor.

98. iv just had a supra pubic catheter fitted and wish i didnt because iv had nothing but pain since i had it in three week s ago i wonder if it cause an infection in the bladder can someone please let me know thankyou. i am so scared tho im only 35.

99. Hi Foxylady, infections can cause pain. Your doctor can test for and treat UTI. Keep in mind a new SPC can take 6 or more weeks to heal. As mentiond here alot, a numbing gel like Lidocaine or even a babies teething gel applied around the catheter insertion point may ease your discomfort. Hang in there, most find it settles down in time and if not don’t stress, it’s always reversible.

100. Graham .. I am Ronna’s daughter. I thought I would let you know that she is in the hospital with a severe kidney infection. They are doing blood cultures to make sure she is not sepsis. She has had the roughest time with the spc over the past and has even said toe she is sick and tired of being sick and tired. Her urologist sucks and set him straight today… he does not know it yet but we r finding a new one. Her resistance to the antibiotics is increasing.

     She was on the phone 3 times with her urologist office this week and no real concern on their part. I encouraged her to go to the after hours emergency clinic.. they sent her to the er. Thank you so much for this forum… it has really helped her over this past year. I just thought I would share… probably more for me.. because I can not do anything… nothing to ease her pain.. her infections.. or her frustrastions. Thank you for listening.