Super Supra Pubic Catheters

1,776 thoughts on “Super Supra Pubic Catheters”

1. My brother has been diagnosed with paralytic disease. He is 45 and had a cancerous brain tumor at the age of 4. He has a SPC (about 4 years) and they now want to do a colostmy. I have seen his distended stomach before, but this is not right. We are at our wits end. If we agree, he will probably end up in a place we have been avoiding. Yet, I wonder about the quality of life improvement I believe he will have. Any adivise out there on SPC and colostomy combo. I know I must be ignorant and sound horrible. I’ve been up all night trying to find info …nap…hospital…pray for my brother. He is the kindest soul you could ever know.

2. Gemma: A stem could mean several things. The average male bladder only holds 600 mls so once a day, yes he would feel bloated and probably busting to go. It won’t hurt to try a medicine like Ditropan (Oxybutinin) that relaxes an over-active bladder preventing spasm and collapse. I still suggest self-cath or IDC over SPC for your hubby at this point.

   Lynn: SPC and colostomy are fine together. Of course care should be taken to avoid cross contamination as they’ll only be several inches apart but many people with both report no problems of interfering with each other. In fact a colostomy should reduce the bloated abdomen in turn reducing stress on the SPC.

3. hi, ive had a SPC with a plug for about 2 months due to a stricture thats hopefully going to be removed surgically soon. but im 19 yrs old serving in the military an while home awaiting orders i was in a very serious car accident. (trains hurt i might add) i had 7 pelvic fractures, severe head trauma, amnesia, and my urethal tubing i guess u could say was torn from my bladder. the tubes were reconnected and we tried twice with a foley cath but about two weeks after these were removed the scar tissuded returned blocking my urine flow slightly. the SPC was put in when i had travel arrangements in case the stricture closed completely while in flight i could use the SPC as a backup instead of my bladder exploding :) that was two months ago, the stricture hasnt closed and i still use my friend instead of the SPC but lately i notice when i empty my bladder the SPC slides inwards, obviously from the bladder shrinking but why when it slides in or out at all do i feel it in my uretha?

4. hi graham i do hope that u spc has finally setteled down with the spasams that u were having i just want to know that if anybody know why? .I have just had a spc fitted and iam a quiet a lot of pain on a daily basis and i am supossed to be returuning to work but being in so much pain from time to time it is just imposible.i work for the NHSin the uk but the spc is working fine i do not won’t it removeing because of wet pant’s ect but at the moment

5. Joshua: Men can feel most of their urethra. As you have no paralysis it’s normal to feel the catheter and in time it’s not uncommon to even develop sensation where there was none. Take me for example, as a quadriplegic I cannot feel a punch in the stomach but if you keep punching for an hour my body somehow gets a message through to my brain (usually a warm feeling in my case) that pain is in that area. I can feel my supra pubic catheter site. A numbing gel may provide you some relief. Adrian: All I can suggest is a numbing gel, painkillers or see your doctor about a different method of catheterization.

6. thanks for your repy jousha the pain i am feeling seems to be getting a bit easier i hope just sore. i am still a bit in the dark as to were i am as to changing the spc the hopital says that they need to change it but as i have had a lot of up set at the hospital i do not wont to go down that road. the district nurse says that she can change it in my home were i feel much more happy. what is a cicostcope as the doctor did not tell me when i had the spc fitted? and is that why i am in so much pain in the neather reageons? Nobody spocke to me over the procedure the first time i met the person who put u out or urder. was in the theieter. plese reaply.

7. How does one find out their Ph level? Do you have to go to a doctor?
   Are Urex, hiprex, mandelamine, etc…………prescription drugs?
   I am 68 and have had mine for 2.5 years. Thank God I am healthy otherwise. Even play softball with my SPC. But, infection seems to be unavoidable…………????

8. thanks graham, i moved the spc out a little ways and it doesnt seem to be doing it anymore
   Adrian- hey ive had a cisto several times an its nothin to worry about at all they put a numbing gel in first than slide the scope in it doesnt hurt at all

9. Joshua: Thank-you for your feedback and helping others Joshua. Do you use a wheelchair? If you would like to share your life story I’d be interested in publishing it on this website.

   Dennis: In most countries you can purchase a urine pH test kit from a chemist or pharmacy, or buy one online. I’m not aware of any country that bans importation of urinary pH test kits so you should be ok there. Again depends on the country but Hiprex Urex etc. are not perscription drugs in Australia USA or England as far as I know and can in general be bought over the counter.

   I’m in Australia where Hiprex is about $7.00/150 tablets but we have a government scheme called PBS (Pharmaceutical Benefit Scheme) that reduces the cost of any perscribed drug listed under the scheme to $5.90. Not a big difference in the case of Hiprex but a huge saving to a friend with Multiple Sclerosis who can purchase the new $1000.00+ steming injection for $5.90. Infections (Urinary Tract Infections) can at best be minimised but never eliminated.

   Also of interest to you Dennis may be studies that show an increase of tumors in patients with permanently indwelling catheters for more than 10 years, due to they believe, rubbing.

10. Graham: thanks for the quick and accurate response. I will go to my druggist now.
    Nice to have such a wonderful resource as your web site.

11. I would be more than happy to share my story with whomever is interested, no i dont use a wheelchair tho i was forced to use one for some time after the accident when they told me i would need it for six months i decided two was more than enough seeing as tho im still in my teens i have youth on my side for a mostly speedy recovery. im sure you dont want me to begin my tale here in the comments in case its horribly told so if theres some other way im all for it, thank you for your time

12. Graham, My husband is a 64 yr old Para T6-7 (34 years) who has had a suprapubic tube for 16 years with minimal problems. He changes the tube about every 2-3 weeks, less in the last year. Lately, urine has been leaking at the stoma site during the day. He has done everything he knows to make sure there are no kinks, he changed the tube thinking the balloon did not inflate properly, etc. Do you have any thoughts about what might be causing it/solutions? When he had the tube put in, in 1994, the surgeon put in a 26 fr which, now we understand was way too big to start with but too late now. What are your thoughts about this? Marge.

13. I do have a question about Leg Bags. I have been using the Hollister system. The top or longer leg strap has always be marked 30″ and it was. The new supplier still marks the #9344 as 30# but, it is , in fact, 34″. There seems to be now way to tighten this enought to fit my thigh. Anyoone else have this problem?

14. Hi Marge; boy you guys ask some tough questions. I agree 26 fr is not an ideal initial size. It makes using a larger guage catheter to stem leakage a catch-22. So I’d be inclined to reverse engineer and step down to a 16 fr. Hubby may need to use a dressing to catch leakage for a few weeks but he’s already leaking anyway. The bladder should constrict quite quickly around the catheter and if the bladder has become overactive this smaller guage will help. He could also find Oxybutynin of benefit but he must consult a doctor as anticholinergic drugs can have serious side effects in people of hubbys age.

    Dennis: An obvious fix would be to fold and sew to shorten a few inches then order 26″ from the new supplier, if you can.

15. Graham, Thank you for the logical advice. Carl is going to try it and we will let you know in a few weeks how it works. At least we have somewhere to start. Talk to you later. – Marge

16. Hi, I have a question that maybe some of you can help with before I go insane. My dad is 83 yrs old and has prostate cancer he just had surgery for a suprapublic catheter. Since his surgery his is flowing through the penis. The urologist says this is normal as long as there is more in the legbag then he is going on his own. He no longer feels when he needs to go. He is getting very frustrated and upset. Any ideas? Thanks = Ida

17. PLEASE HELP!! My name is Shaun my 5 year old son was walking out of an restaraunt when a vehicle jumped the parking block and crushed him against a brick wall. Alex (my son) spent his 6th birthday in ICU. He has a colostomy bag and a supra pubic cath (maybe for life). He has had this for 5 months now. His new cath that the doc put in will not stop leaking around the site. As soon as we change him he is wet within 15 min. I dont know what to do. He is also in a lot of pain all the time. He sais there is a heart beat in his pee pee that hurts. Please someone help me help my son.

18. Shaun: Your son Alex is facing more complex challanges and changes over the next few months. You must seek further advice from urology specialists or seek a second professional opinion if you are unhappy with what you have been told and need more information. We are not medical professionals. In your case all we can offer are prayers Alex will get through this time as best as possible.

19. Hello…thank you very much for this site. My name is Denise and I live in Missouri, I had my suprapubic cath put in last week, and I can’t seem to get over the pain and bladder spasms …my question is, how long will it be before I feel better.? I hope it’s soon. Thank you very much.

20. Hi. I’m going to see my urologist at the end of the month to talk abut a suprapubic cath and I’ve been looking for real world info. Your site is great and I’m beginning to get a good idea of what we’ll be talking about. Thanks for this terrific site! I’ve been living with an MS bladder and basically tethered to the house for years now. It’s time to do something better that meds and pads.

21. My SPC keeps getting pulled and bleeds as a result. I have tried attaching it to my leg and feeding it up through my underware. Is there a product out that will clue it at the entry site to stop the pulls?

22. hello graham i havent been on here for a while alot has happened with my hubby. last time spoke to you was about his self catherterization and how he could be helped in getting less infections. well something has developed from that. and he has a rare infection now which doctors are saying they cant get rid of his now become ressistant to all oral antibiotics and has to have gentamicin through iv if he is bad well his always feeling bad. they have said he has pseaudomonas aureginosa. im just wondering if you have heard of that?

    no medication is working for him. and they basically said he has to hit the floor before i take him in to have the iv.which to me isnt fair i have read up on the infection and saw what it can do and its not nice. he is having problems self cathertarizing now its been 2 weeks without any antibiotics he says that he goes to cathertarize it will come out fast (wee) then suddenly stop. and then he cant go then. i just wondered if anyone else has this and could advise me on the best possible way to give my hubby a better quality of life, thank you gemma

23. hi im due to have a supapubic catheter fitted soon can anyone tell me how long it will take to heal bcs i dont want to miss a inportant engament any help will be very gratefull thnks andy

24. *I’m on a months vacation guys. Please try to assist each other.

    Ida: I wouldn’t say normal but it’s not something of great concern. Some swelling may upset the flow of things for a week or two but passing urine by any means after prostate surgery is much better than not passing at all. The sensation to void (pee) may never return.

    Denise: 6-8 weeks post-op the level of pain sensation you experience will be about as good as it will get. Numbing gels like Lidocaine and Xylocaine or even a baby’s teething gel applied to the supra pubic catheter site can help ease pain.

    Nancy: Thank-you that’s very sweet of you to comment and I greatly appreciate it. On behalf of all of us I wish you the very best outcome ever possible and hope to hear from you again.

    Robert: Not specifically but you can use a tape like micropore to secure it to your tummy adjacent to the catheter site. I don’t usually recommend this as it can create more problems like blisters and long term misshapen catheter positioning. Find some tubing to lengthen enough to create the slack you require or stop the pulling at the source.

    Gemma: Nice to hear from you again. Due to the overuse of antibiotics in the past and fear of hybrid super-bugs developing the pushing of IV antibiotics and general GP perscriptions will become increasingly reluctant. I am familiar with pseudomonas aeruginosa. In people with compromised health, colonisations that occur in critical body organs such as lungs, urinary tract, and kidneys, the results can be fatal. I have lost several close wheelchair friends due to sepsis from urinary tract infections. Seemingly healthy one day gone the next. Kick and scream Gemma. Phone local medical advisory services, take him in and refuse to leave the ER, call the media and your local member of parliment.

    Andy: A supra pubic catheter never fully heals but things should settle down within 4 to 6 weeks.

25. Graham & Gang, Just wanted to touch base with you regarding the status of Carl’s supra pubic tube problem as of April 13: Just as an update, Carl has had a supra pubic tube since 1994 with almost no problems at all until April. His 26 french supra pubic tube started leaking badly around the site. He didn’t realize that he had actually inadvertently done it to himself.

    About 2 years ago, he began slightly pushing in the catheter after emptying his leg bag during the morning and again at night, thinking that he was emptying the bladder completely. Not realizing that he was actually wearing the hole bigger and bigger, hence, the leaking began. He resorted to wearing the dreaded attends and covering the site with a gauze to catch most of the drainage. It is amazing how much it has healed and now the leaking has stopped completely. Again, thank you for your advice and giving some ideas and hope.

    To the rest of you, my thoughts and prayers are with you all as you face your challenges.- Marge Wilson

26. hi anybody knows i have just booked a holiday to the red sea i would like vto go and do the diving would their be a problem with a spc or not i feel very silly asking about this???????? thank adrian.

27. Hi ya graeme. Thanks for your reply my hubby is still feeling really poorly with this pseaudomonas. So I took him to the hospital. As he has got constant blurred vision headache aches all over and when he tries to self cathertarize it keeps stopping all the time his lucky if his getting a thimble full out. So my reaction is he needs antibiotics as he has become resistant to all oral antibiotics and can only have 1 antibiotic which is IV.gentamicine. Took him down there they said because he wasn’t in a fever and hadn’t hit the floor yet so they wasn’t prepared to help him. I’ve been searching the whole Internet for a specialist thatdeals with pseadomonas aureginosa and can’t find one it’s driving me crazy they said the gentamicine wasn’t working for him and that it’s just a prevention from going to the lungs. But it all stemmed from a uti. I’m going out my mind here as I’m looking after him 24/7 and just want him to start feeling better if it’s only for one day. Hope your well graeme x

28. hi all, well i’m getting on good with my spc, it has taken since last oct to settle but it was deffinately worth it, although i have had a few bad uti’s which are uncomfortable, but i am also type 2 diabetic which has caused most of them, hope you are all well. papa12.

29. Thank-you for your fedback Marge, Gemma and Papa12, I appreciate it very much.

    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 the 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.

    Gemma: You may have to report hubby’s issue to your local GP, health authorities, media, anyone who’ll listen and act to put pressure on the hospital. No amount of water will flush pseudomonas aeruginosa through. Oral or IV doesn’t matter, he needs a specific type of antibiotic that targets that infection. Perhaps you could consult a new urologist. From what you describe, I think there are greater problems than a bad urinary tract infection at play.

    Pseudomonas aeruginosa is a notorious pathogen resistant to antibiotics due to the permeabiliity barrier afforded by its Gram-negative outer membrane. Only a few antibiotics are effective against Pseudomonas aeruginosa, including fluoroquinolones, gentamicin and imipenem, and even these antibiotics are not effective against all strains. Cystic fibrosis patients who become infected often find the strain is so resistant that it cannot be treated.

30. My SPC is 4 years old. I have had continual loose flappy skin around site, l have it burnt of but within a week or two its back. It’s always bloody and will not heal.

31. OK, Graham or whoever has the time: Funny how talking about my need for a cath isn’t all that difficult for me, but this — well, eight years in a wheelchair have done nothing for my figure except add to it. Must’ve gained 30 lbs. Lost some this summer, but the gut … hm. Is this going to be a problem for a super-pubic? It’s no longer a few inches from the belly button to where the cath might be inserted. I’d appreciate some insight, whoever has the time. Thanks.

32. Graham: I hope you are having a great vacation. I have had my SPC for 3 months now and I’m very pleased. I should have done this long ago. For 5 years I used a Foley inserted through the penis. The SPC is cleaner and more comfortable. Nancy: I have a moderate amount of belly fat and this is no problem. SPC fits nicely in a fold / wrinkle. Keep going with your exercise and weight loss.

33. Mike, thanks for the reply. I appreciate the info and the encouragement. Cheers!

34. after 3 months with my SPC i finally went swimmin, i use a Plug so i always have the tube taped to my belly and besides wet tape it was a perfect swim, so anyone nervous about swimming, its tottaly fine! Also i have surgery july first ill have a SPC and a foley for two weeks after than nothing at all! please pray for me.

35. Swimming with a SPC is not a problem but it is hard to get an answer from the doctors. When I asked my Urologist he looked at the nurse for an answer. Then he began to ask me questions. You want to swim in salt water? (I live on the coast of the Gulf of Mexico). No, I want to do aquatic exercises (not swim) in the pool. Well, I guess was my answer. I find the new 100% waterproof bandaids made by Johnson & Johnson are very good. I plug the end of the catheter and use a bandaid on my belly around the catheter.

    Joshua, my thoughts and prays will be with in July. Please let us know how you get on.

36. Hello Grahem Thank you for your response to my last post. i really have tried to kick and scream about this pseudomonas but nothing. my hubby is now 5 weeks without any medication and still doing his self cathertarization. and the problems have started yet again. he hasnt felt well since they discharged him from hospital 5 weeks ago and still feels rubbish.

    I have spoke to his gp that has said they are very restricted with what medication they give now!! But their giving him nothing because his resisitant, he has the pseudomonas in the urinary tract must be quite bad if they say that the iv antibiotics arent working either. all they said to my hubby is tthat ‘we are really sorry but the antibiotics arent working’ i dont know exactly what that means. you said youve lost a couple of friends that have had this which im so sorry to hear, but also at the same time im petrified about this happening to my hubby. because everyday is a bad day.

    his water works are starting to play up alot over the last few days and his asked me to ask you or anyone else that reads this if they can help. he will put the catherter in his wee will shoot out quickly then suddenly stop . he hasnt been able to go properly in the last couple of days and im so worried what with this pseudomonas and all.

    what could it be thats stopping it from coming out could it be the infection or is it time to say goodbye to self cathertarization ??? i feel really in a pickle at the mo worried and so upset. please could you give me abit of advice. (anyone) ….. kind regards Gemma

37. Hi, I am a 34 yo C5-C6 Quadriplegic & had my SPC for 12 years now, every few months the SPC hole gets a bit meaty kind fleshy, I shower and clean the SPC hole every morning & every night and put betadine around the SPC area. When i get this red meaty thing in the hole area i get like a stingy pain when my bladder is emptying. The Doctor said thats just healthy cells growing from time to time (which i doubt) , i asked is there anything i can put on it to get rid of it he says no just keep clean (which i always do), this meaty flesh can last from 3 days up to even a month befor it disapears, when its gone i dont feel anymore pain when bladder is emptying. Can you please tell me if there is any cream i can put on it to get rid of the red fleshy meat? Thank you so much

38. REFERRED PAIN IN THE END OF THE PENIS. ZOWY!!!!!!!!! The pain stops as soon as the tube is removed. 7yrs ago the 1st SP was inserted. I healed quickly & relatively comfortably. At 1st pain acted up as I bent to get off bed, car seat, etc. Now pain is almost constant, * except IMMEDIATELY when tube is removed!!

    I can urinate in 10min tho I’m 86. (I’m told men over 55 usually take 24hrs.) Rx’s… 7yrs: hooked on Tylenol with Codein. B&O suppsitories slip out, tho I prefer – more local & effective, & I’m more alert & awake. Marijuana not recommended over 80 – perhaps can trigger leukemia. Gabapentin – I sleep most of days, & it hardly takes edge off pain.

    Dr’s Attitudes. When one’s hair turns white, lots of staff yell at you. I’m not hard of hearing. By 86, 1 would think I know my own body pretty well. Most of “them” seem to disagree – a plethora of docs @: urology, geriatric urology, geriatric pain management, urology, neurology, urology, regular pain management, urology, psychiatry (no joke), urology. – a 7-yr jouneyso far… the saga continues…

    Sex? Yes!! Forget yet another Rx, i.e., Vardanafel, “as seen on TV,” etc., & their side effects. PosTvac works simply, is based on common sense vascular plumbing, is only gadget OKd by FDA, Rx gets $ covered by Medicare, comfortable, doesn’t stifle the mood + TA DA!! Pool… Thanks for the H20 OK, for water aerobics relieve body wt for more effective workout. Duh…

    Docs & nurses are amazed I change the tube myself – more slowly than they = nooo pain.* They think the referred pain – almost constant now – is due to bladder spasms. I don’t!! My guess is the pain is due either to bouncing on a nerve or behind a ligament or ______ < your supposeition here. I'm up for ANY ideas, ragged out – as you can imagine – & not up for fun to say the least!! HOPING THIS HELPS SOME OF YOU AS WELL!!!!!!! THANKS, FOLKS!!!!!!!!

39. Graham, et al – a great addition to what I’ve learned @ hospitals. Try not to fall off your chairs laughing – as a few doctores nearly did… Remember that Sp tubes were inveneted in the not-so-distant past, might there be a simpler (tho not easy) even more obvious way to eliminate urine AND thus infection from the bladder?!! After all, this is the one time women have the pysiological advantage; women have a urinary exit at the bottom of the bladder AND gravity!!

    Warning – Men, try not to recoil here, but imagine a teeny/tiny tube inserted somewhere between the legs, for total elimination. Nerves & musculature notwithstanding, ask your doctors, too. You probably have more contacts than I, AND stranger things have happened…

    Morgellons Dis-ease, aka The Itching Dis-ease (dis = not ease) If any of you have – diagnosed or probably not – symptoms of: intense itching that interrupts sleep, balding, foggy thinking, etc. now I FINALLY found a teaching dermatologist @ a major univeristy, who believes me (after 3 psychiatrists cleared me of ” disillusional parasititis, ” Ekboms Disi-ease, etc.). He has enough clout to phone the CDC to give me relief to sleep more. But this nasty, mysterious saga continues…

    Less than 2% of Dr’s in the World know of this. The public who watches TV is hearing more on: TV (CNN, etc.), Maury Pauvich & Dr Phil – even a plot on ER. There are a variety of suspicions about the cause – really fascinating, i.e., “alien” bacteria on meteorites, think some NASA scientists, so that’s why it’s Worldwide. Anyhow, I have a couple of suggestions & a contact who might help you. I surely could use your help, too. You are a tough AND classy support group!! Thank you for sharing & caring!! Please contact me so we can share

40. Mike: thank-you for helping out, I appreciate it. Good luck with your procedure Josh.

    Gemma: Consult a new Urologist. If that’s not possible inquire about Ditropan (Oxybutynin) or similar drug to relax the bladder so it can fully empty and by drinking plenty of fluids hopefully flush the urinary tract infection through. 3 or 4 four naturally brewed beers daily may help, drink plenty of water too.

    Lee: It probably is new cells growing, some call it proud flesh. An alcohol wipe (betadine is ok) will keep it clean and dry and as strange as it sounds, hemorrhoid cream will assist in shrinking it up, but these are only a fix. By identifying the cause for new cell growth you may prevent it from occurring altogether. Cause may be trauma like accidental pulling on the catheter or stomach/bladder spasm.

    Walter: 86 and still enjoying sex, good for you! The pain could be from bladder spasm or more accurately the constantly rubbing tube as a result. It’s been suggested constant rubbing can further cause tumors and should be avoided. A drug like Ditropan (Oxybutynin) may ease bladder spasm. Also apply a numbing gel like zylocaine or lignocaine to penis tip. A supra pubic catheter is worth your consideration.

    Lily: Not sure what that has to do with supra pubic catheters… do you use a catheter? Men and women’s bladders are the same, both drain from the bottom of the bladder, and both expel urine below bladder level.

41. I have not posted for some time, haven’t had any problems. until today. I keep up with the new posts to keep learning how to take care of my spc. I go to a VA SCI clinic and they are very good. My tube would not come out, my flow is good, site is dry, skin is in good shape. I turn my tube every shower, it moves freely, site is 1 yr old. It took 20 min. to pull out. Kept filling-draining balloon to try to change the shape, pulled from different directions. In the end they pushed down on my belly with a flat hand and ripped it out. This was 7 hours ago, my ears are still ringing from the shout I let out. I feel like my urinary tract was torn out of my body from its very roots.

    I feel very badly for the person that can answer, but what the hell happened to me today? The nurse said scar tissue formed and the hole was smaller than the tube. I get a new tube every 3 weeks, last change was a tug, not a tug of war! My nurse, the same one since day one, put in a 20fr instead of the 22fr he removed. I love my nurse but I am scared to go back in 21 days. What can I do to prevent a repeat?

42. Hi Laurie, I have had the same problem. I too go to VA SCI for treatment. I change SPC’s myself and instructed to change catheters every week. As you describe I tried a number of things to remove cath but it was traumatic causing bleeding. I went to VA Urologist and asked him to change cath. After so much pulling he placed his hand flat on my belly with cath between his middle fingers and pulled until it came out. Again this caused blood to run down my belly and when the new cath was inserted there was blood in the urine. When I asked the doc for advise he did not have any real answers. I don’t have a problem with needles, blood or changing SPC but on future changes I made an extra effort to relax and had no problems changing SPC at home. Please let us know how you get on. Best wishes.

43. Mike, I am so sorry we have that shared experience. I have muscle spasms, and nerve degeneration. If relaxation has helped you I can try medication. I can’t relax on my own, but take a maintenance drug cocktail to allow me to hold and use a pencil, maneuver my chair and have a few functional hours. For my next change I will take what I am allowed for breakthrough pain and spasms 30 mins prior. Even today I could take a marker and trace all the nerves uprooted yesterday. I have been passing blood and tissue but with good flow and no leakage around the smaller cath. I am hydrated and watching to see if I will need to have my nurse flush my tube. I am not surprised your urologist had no advise for you. Collectively we are the specialist. Thank you for reaching out.

44. Hey Guys, if you use cheap nasty catheters you need to change them weekly as Mike said. If you’re using a good quality silicone foley catheter don’t leave it in more than 3 months. I use the latter and change every 2 months with no problems. With any stuck catheter it’s very important to first make absolutely sure the balloon is fully deflated. I can’t see how the hole could become smaller than the catheter

    Laurie: more likely scar tissue grew onto the catheter. Your catheter may be twisting at site but not bladder and Marge on May 16 reported pushing or twisting is believed to have made her hubby’s pathway to large so keep that in mind. Keep on your 3 week changes Laurie, it should settle down, if really worried try silver impregnated non-stick catheters.

45. We all change catheters to keep down bacteria and infections. Frequency of change is a bit of individual thing. I use 100% silicone sterile catheters and a quality, sterile insertion kit. Regardless, of sterile product and sterile procedure anytime we put something foreign in the body we introduce a small amount of bacteria which can grow according to PH levels in urine.

    I have had a long history of UTI’s therefore I change catheters each week. Yes, my urine is conducive to growing bacteria. If you go back and read the excellent advice posted in the past on keeping the correct PH level in urine you can understand my problem. I don’t drink enough water. I drink coffee and milk instead of fruit juice. Can’t tolerate all the acid in juice. I gave up sex and don’t want to give up small pleasures of my diet.

    Laurie, my doctor did not give me a concrete answer but did mention that when the balloon is deflated that it is not nice and round. I changed my cath again last evening and again the trick for me is to relax.

46. Thanks guys, I do not have the fine motor control to change myself. Years ago I was able to self cath every 4-6 hours. Now I don’t even tweeze my own eyebrows. The VA uses a Bardex silicone catheter. I am not sure if this is a good product (lowest bid) is more likely. I have muscle spasms and spastic limbs, but I do have good drugs. I have my maintenance mix daily and some as needed. I seldom take anything extra, much to tempting to zone out with three teens in the home. I am sure it only happens in my house, but if I am not on patrol they revert to wild beasts, foraging for food, leaving a trail of destruction and peanut-butter on the remote. Next change I will take my extra meds to see if it relaxes me. If I am still having problems I will request the silver non stick, but be prepared to bring my own. As always thanks for the help.

47. Wild beasts, that’s funny and no it’s not just your house Laurie. I have some little ferral beasts who frequent my place leaving handfuls of empty lolly wrappers shoved under couch pillows. Bardex are generaly a cheap short term (1-4 weeks) catheter especially the brown ones but they do make silicone types often clear or green. You should find great improvements with a silicone foley or even better silver impregnated catheters.

    Mike: if it’s not to personal a question. Why did you give up sex? Was it supra pubic catheter bacteria/infection related?

48. Laurie: Love your sense of humor.

    Graham: My impotence is due to nerve damage. I can’t pee, poop or have sex but I can walk short distances. Nerves are tricky things. It is hard for me to get or maintain an erection. Ejaculation is nearly impossible. I have had retrograde and weak ejaculations with no feeling. So at age 60 and single I have given up on sex. Sex is a healthy part of life and I encourage everyone, if possible have an active sex life. Most of my UTI’s have been minor. However, last year bacteria found its way to my scrotum causing a varicocele. After I got that cleared up I was ready for a SPC and now I’m happy to be a member of the Mad Spaz Club.

49. Hello graeme and all the gang!! Thank you for your last post and sorry it took me so long to reply. well i did what you said kick and scream about my hubby, my head is ready to explode. the pseaudomoas seems to be so fierce at the moment its horrible for me let alone my hubby whos dealing with it.

    ok so my hubby self cathertarises. they let him out of hospital 51/2 weeks ago when he had 7 days of gentamicine. he felt ok for 1 day, thats all. for the last 5 and a bit weeks he has felt awful its 2/12 weeks today where he hasnt been able to self cathertarise properly, I mean by that he drinks up to 4 litres a day and maybe getting a litre out my husband has no feeling as to when he needs to go for a wee he has no feeling of urinatineing at all. He’s not incompotent just has to guess when a good time to go is!!.

    they told him to self cathertarise twice a day morning and night, he is having to cathertarise alot more than that tying to go about 10 times a days and still nothing he said it feels as if his bladder is collapsing when abit of wee comes out, im really sorry to have to go into detail its just that im in turmoil no one is helping us. you’ll understamd why once i explain. :-). His wee for the last week has really smelt horrid too, really horrid.

    ok so i called the emergency docs out last week to come and see him at home where my hubby done a urine sample and the doctor tested it with the test strip, it changed colour as soon as the dipstick went in the doctor said ” oh my god its changed straight away and your off the chart for infection he just kept saying hubbys infection colour was 98 +++++++++++ whatever that means but it concerned the doctor enough to ring the hospital to see if they would admit him.

    the doc was on the phone for about 30 mins argueing with the hospital to see him and get the iv antibiotics inside him as his still resistant to them in tablet form. they would not take him as he didnt meet their guidelines. ie he wasnt shaking vomiting and collapsed. so that was that doctor went and basically said to my hubby to get on with it.

    Me, im not happy at this stage as he is very poorly. so i called his urologist and kept calling monday and tuesday wednesday i finally got a call wednesday evening from him RESULT!! but was it. he agreed to see the hubby the next day at the hospital in one of his clinics. we went in provided a urine sample he said their were traces of blood the hubby told him how he felt and the fact he couldnt wee properly again and the fact it smelt awful. so the urologist said “well hold on ill have a look at your notes” he came back out and completely changed the subject. what i mean by that is he didnt want to talk about my hubbys illness. he went on to say about an operation my hubby is having next week on a kidney stone, which is irrelevant. so i chirped up and said hold on if he has this infection thats completely off the chart he wont be able to have the operation because we all know you cant. he then said to us thats all he can do and bye.

    well what a waste of time. ive spoke to my local mp but no joy from them. im going out my mind as to why the medical side of things no one is wanting to treat my husband. I have researched pseudomonas massively my head is about to explode. am i right in saying that ok he cant wee properly its smelling badly could this be the signs of sepsis.????

    surely this is doing his kidneys no good with whats going on and surely it must be putting a massive strain on them. the medical staff told me when he collapses bring him in!! I dont want to do that graeme because thats really bad and who knows what might happen. sorry i’ve written an essay, but you and the gang is all the support i have at the moment im getting no support from anywhere else Please Help. Regards Gemma x

50. Mike: yeah nerves are unpredictable, especially when there’s damage at sacral levels S1-S5. If you meet a nice lady or simply for your own entertainment a penis pump and elastic band at base of penis should assist in achieving and maintaining an erection. I wrote in depth about the subject here wheelchair sex after spinal cord injury.

    Gemma: at least I hope you can take some peace of mind in knowing you’ve exhausted all options. The only suggestions I can make are in the article. 3 main things: 1) Buy a pH test kit and adjust diet until reaching a pH less than 5.5 then take Hiprex. 2) A few naturally brewed beers daily. 3) Leaving an IDC in (change weekly) connected to a drain bag could also prove of benefit. That’s all I can really suggest. The only way to find sepsis is by blood test. It usually knocks you down quite fast once contracted. In 24hrs hubby could collapse and sadly it sounds like that’s what the Doctors are waiting for. Try the 3 above Gemma.

51. Hello Graeme and gang. me again. oh graeme everyday seems a testing medical day for me and hubby. ok so you know hubby has pseudomonas. i had to get a home visit today from a doctor because he is still feeling very bad. i sent off a urine sample last thursday to be tested. the results are it shows pseudomonas is at bay and not showing on the infection in the urine. but hubby now has e-coli infection. which i dont know alot about that. so the doctor gives him some antibiotics. ciprofloxin 500mg. hubby took 1, 10 mins later he was covered in lumps and his throat and tongue started to swell up so i rushed him to hospital, where they gave him a pirotone tablet to stop the allergic reaction. they checked hiis vitals which were ok. but they did say he was still resistant to antibiotics therefore they cant treat the e-coli infection until my hubby starts having fever and high blood pressure then im to take him in to get iv antibiotics.

    I told them he is having problems self cathertarising hubby drinks 3-4 litres a day and getting a litre out if his lucky. so again his not being treated. how bad is e-coli with pseudomonas? he is also due an operation on friday to have a kidney stone out but if he has this infection im on the understanding you cant have an op with an infection, ??! i tried to tell them about him having this metallic taste in his mouth but they didnt seem bothered. i have read a little on e-coli in the urinary tract and it says if left untreated it can damage the kidneys. his asked me to write to you today as i tell him everytime you reply and he thanks you for the support. Kind regards to you and all the gang. gem x

52. Hello Guys! I am 25y.o recently dignosed and surgically treated for a severe bulbar urethral stricture. I have had my spc for 3 weeks now. There was a massive bleeding 2 weeks back for which I had to underto another op to clear the clots in my bladder. So far I am mostly fine with the spc apart from two problem:

    1. nigt-time erections – It leaves me with a bad burning pain on my urethra (possibly due to irriatation of my wound by the seminal fluid) which stays for some time. Furthermore, I noticed clots of blood coming out of the spc following such erections. What is your experiece of erection (for that matter sex) and urin flow/ bleeding via spc, especially those of you with urethral pathology?

    2. urination via urethra during defecation. The main reason I needed an spc is to avoid urine flow over my urethral wound until it heals. But some urine keeps dribbling and gushing out when I strain for defecation. Is this a common thing even if you have an spc draining your urine? Anthing I can do to avoid that? thank you so much!

53. Hi, My daughter has a spc since February, She has spina bifida and has struggled w/ incontinence since birth. She likes the independence she has w/ the tube but has problems with odor. This holds her back socially. She has no symptoms of an infection accept the odor. I asked her urologist about Hiprex or ural and she had never heard of it. She has her tube changed once a month. I am wondering what the next thing is to ask about. She wqould like to get a job but is concerned about the odor. Any ideas?

54. hi graham and you all, i use i legbag and a night bag, and change both every three days, but i was wondering should i be using something to sterilize them each day? any suggestions would be greatly received. the reason i am asking is i happen to have diabetes and have been getting constant uti infections, although doc has given me some long term anti-biotics, as when i have a uti it puts my blood sugar up high. i have just been put on victoza whick is supposed to lower above problems which will help me lose weight and allow me to come off insulin, i had a good couple of weeks not using insulin, just victoza and my blood sugar was perfect and i lost 2 stone in 4 weeks, because i was on 216 units of insulin a day and my body was resisting it and turning it to fat in my body.

    I do have some good news, i should be getting my new mercedes benz sprinter with hand controls, and wheelchair lifts although it has taken a year from ordering with quite a few delays due to maifactere and adaption specialist, i was suppossed to have it in september 09, i will be able to get out and about in my electric wheelchair, i am also awaiting a transfer to a wheelchair adapted bungalow with my family, i have been confined to the front room sleeping on electric recliner chair,as i can no longer use my stair lift as it hurts my back too much and i cannot bend to its shape, yours truly papa12

55. Gemma: e-coli thrives in the acidic environment of the bladder where it multiplies and inflames the bladder lining causing a condition known as cystitis. It only becomes a big problem if it backtracks and infects the kidneys as you may know. Drink plenty of liquids and take a urinary alkaliser or one teaspoon of baking soda (bicarbonate of soda) in water to clear it up. It shouldn’t be a big enough problem to stop kidney stone surgery.

    Belew: that is quite a complex problem for a 25yo to develop. Preventing unwanted erections is not easy unless you undergo surgery to stop them completely. I’ve never noticed blood clots during or after an erection or sex. I suspect the clotting is coming from the repaired stricture site and so should subside in a few weeks. As for the leakage a little is not out of the ordinary for active people. If it’s bothersome reduce activity and insure your supra pubic catheter is draining well. Avoid bearing down on the toilet, it can cause hemorrhoids. Take a stool softener like coloxyl senna at least until you have the spc taken out.

    Suz: I believe it’s often called Urex or Mandelamine in the U.S. The drug name is Methenamine hippurate. Ask at your pharmacy as you should be able to just buy one or similar over the counter (don’t need a prescription). You’re right, strong urine odor often indicates infection or overly concentrated urine. Make sure she’s drinking at least 3 litres (6 and a half pints) daily and empties her collection device frequenty. Have a urine sample tested for pH level and infection. As in the article, Urex etc are best effective when pH is less than 5.5. You can lower urinary pH by diet.

    papa12: I srongly advise cleaning and sterilizing urinary drain bags etc before reusing to avoid infection. There are many commercial sterilizers on the market like Milton and Hibitane but even bleech diluted with water to a ratio of 1:100 or vinegar at 1:10 or hydrogen peroxide at 1:10 are effective in sterilizing drainage bags. Gled to hear about your van, it should bring you greater independence, which we all love.

56. thank you graham, much appreciated, i am suprized i never questioned the nurse about it before, i am so thick sometimes, anyway thanks again, yours truly papa12.

57. Graham, thanks a lot for the tips!

58. hi ya grahem thank you for your reply. hubby is still in hospital, will be for the next 2 weeks as the infection has spread into his groin (testical) and stomach. he was on gentamicin as that was the only antibiotic that he wasnt allergic too. unfortunately they have now said he is allergic to all antibiotics as he had an ellergic reaction yesterday to the gentamicin.

    all the doctors said was this is a very complicated case now. im not sure what this means as with the rest of his life not being able to take antibiotics. they put him on some sort of medication that is in iv form 3 sachets a day for the next 2 weeks see how that goes, he’s on morphine and ibrupofen. his water works are still not playing cricket, but they havent mentioned a indwelling catheter or an spc or anything like that.

    i just thought id give you an update as ive popped home and saw your reply to me. lets just hope his going to be ok. thank you for all your information over the last few months its really helped me to come to terms with things. regards Gemma

59. our thoughts and prayers go out to you gemma and your husband, every thing will turn out ok, the doctors are doing all the right things, best wishes papa12.

60. Hello to all im currently in the hospital for the next few days recovering from the urethal reconstruction surgery i have a foley cath and spc AND two drainage tubes an let me tell ya waking up after surgery HURT! the docs obviously try to dope me up every chance they get but im somewhat against pain meds. they say i lose drains before i leave here and BOTH caths in about a month! thanks for the prayers.

61. Hi folks, I have a question about a product I found online called a Belly Bag. It has an adjustable web type strap around my waist, the bag itself hangs over the SP site. It holds 1000 cc’s and fits nicely under my clothes. The instructions say it can be worn 24/7. To shower I have been using a plug like I do for swimming using good hygiene practices . The bags are very expensive about 30.00 each, and since I love them I am sure it is not good for me. Has anyone used this product? Am I asking for trouble? Thanks, their web site is http://www.originalbellybag.com.

62. Laurie, I can’t see a problem with them, if it works for you go for it. I don’t think they’d suit me. It’s interesting they use the term “studies comparing” but they don’t quote any actual medical or clinical study sources or references. You should be able to clean sterilize and re-use the drain bag a few times to save money.

63. Thanks Graham, one problem is righty tighty-lefty loosey. I have soaked my bed twice by not correctly twisting the drain plug. It says 1000cc’s but I believe 700-800 while wearing is more realistic. I am still happy with the device, it allows me more clothing choices and more independence. I cannot put on a leg bag with an extended tube, or drain discretely in public unassisted.

64. Hi, My name is Shawn. Ive been reading posts in the MSC for over two years now. I had a car wreck in where my pelvis was crushed, I also broke my c7 and the L4 and L5. My pelvis injury caused separation of the urethra. I had to have supra pubic catheter, and have one now for over 2 and half years. In the time I have had it, I have tried to find the cath that workes best for me, and I have not had a lot of luck. I use leg bags ever day of my life, and I have found the right leg bag, just not found the right type of cath, any help or info would be greatly apperciated.

65. Shawn, are they sticking, falling out, bypassing, hurting or some other problem? Your injury sounds similar to Joshua Lee who commented back on April 1, 2010.

66. speration of uretha how? i dont know any technical terms but my “seperation” was the tube from bladder to uretha and that was ripped apart like paper and at the time of the accident the doc managed to get the ends together, unfortunately the rip allowed too much scar tissue which lead to the surgery i just had where the scar tissue was cut away and the ends were cut smooth and rejoined. right now i have a small small foley cath capped and a suprapubic with bag until the 28th. im hopin no more tubes after this.

67. When my pelvis was crushed they (the doctors) said it was like a scissor inside my body, and it cut the urethra in two. At the time of the accident they said that there was to much damage at that time to repair it. As far as the caths go, ive just never been able to find one that was comfortable. I dont guess I will ever find one that is comfortable.

68. Yeah, a silver coated catheter as they are low hypo-alergenic and non-stick combined with a numbing gel might help ease it but you’ll probably always have some level of discomfort.

69. Hi everyone… I am a caregiver to my mom and dad. At Easter time my father came down with a UTI, he was hospiltized for 4 days. Had another UTI Memorial weekend. They since have had him Cath himself for a test. He can go on his own about 100 cc and then he cath’s 300 cc’s. So now, he will be cathing himself 4 x’s a day for the rest of his life.

    Now we have a another issue ~ scar tissue has built up in his penis and it is becoming more and more difficult to get the Cath into his penis to reach his bladder. The doctor just tells me that he is going to have to JAM it in ~ that is the only solution he said.

    Now I am ran across this web-site and learing about it for the first time ~ has anyone out there expienced the scar tissue problem? Is that why you have resulted into the SPC route? Our doctor makes us feel there is NO other way. My dad is 78 and becoming more and more depressed ~ Suggestions???? thanks

70. Hi daughter, there certainly are other solutions. Scar tissue often builds up when a poor self cath technique is practised over a long period of time. I’d be inclined to insert a catheter via the penis, inflate the balloon, connect to a legbag and leave in place for a week (they call this an indwelling catheter IDC). Depending on the outcomes you might then consider a supra pubic catheter. There are also surgical operations worth consideration. I suggest you guys consult a urologist to further explore all the posibilities available to your father.

71. I am mobile and have no right to beef about anthing compared to the brave people that deal with so much. Born with mild spina bifida, it didn’t take it to toll on me untill my forties. 58 now and several fusions later I have a supra pubic catheter of 3 mts now. Every horror story there is I have done. My biggest problem is waking up with the connectors seperated and my newely changed sheets soaking wet. I tape everthing! I guess I could go to the auto store and buy those little hose rings and screw drive the tight. I had not idea people have so many uti’s. I am on my 2nd.

    I tried to join mad spaz site but can’t seem to get my log in to work. There is no contact site to email them. The urologist did day surgery and the nurse handed me xtra gauze and a leg bag and said see the DR. in 6 wks! I had NO idea how to care for the wound or anything about this spc. I wish i had found forums like this then. For a year i had to strain to pee and didn’t know i was pushing urine back into my kidneys. I hope i did the right thing. I will continue to read others post, I know I can gain from them.

72. Hi Ronna, we don’t give out our email address as we want people to post here, so others can benefit from the comments questions and answers. Thanks for reporting the login trouble, a few others reported the same. I haven’t been able to replicate the problem to diagnose and fix.

73. Graham thank you for your ackowlegement e mail. It was your aug 15 2009 post that gave me my first FULL info on spc! Others have said GOD send and you are! Are there women who post and have spc as mine seems to sdinks in and i get terrible pains below, i mean real below like its jabbing me and i have to pull it out slowly a little to alieviate the pain. Do you know if this is common and is there more i can do? I use a leg bag with a long tube that i can hang from the bed and strap to my ankle when i walk.

    Born with fetal alcahol spine (where is spellcheck when i need it) i return to ed several times during the day as chronic pain doesn’t give me several hrs at a time to be up. I was amazed that uti’s seem to be a part of spc. I couldn’t self cath as 4 of the 7 vertebre in my neck are fused and my spine didn’t let me. (Boy, am i the same person as above who said i didn’t have the right to beef about anything lol) Again thanks so much to all who contribute and make my life easier.

74. Thank-you for the compliment Ronna :) Many lovely women with SPC do read and post here. Some have told me of pain in their private parts but usually it’s associated with indwelling catheters not supra pubic. It sounds like your catheter isn’t in the correct position so might be worth having an ultrasound to see what’s going on. It’s quite likely your bladder has shrunk and the catheter tip is being pushed into your urethra causing irritation. If that is the case there are several medications that can stop the bladder shrinking.

75. Hi Ronna, I know that pain down below. The right meds for bladder spasms are a priority, as is a drug called phenazopyridine. My doc calls it a bladder asprin. It relaxes and numbs the bladder to allow pain reduced draining. Leg bags with extended tubing do not allow for complete bladder draining for me. When I have that pain I use a night bag, when I go out I run the tube down my pant leg, cover the part that shows with a stethoscope cover for modesty and put the drain bag in a canvas bag with long straps. No caffeine and I push fluids, while I have pain I stick with the night bag and the meds.

    All I care about is reducing the discomfort and making sure I fill the night bag with lots of light straw colored urine, the more diluted the less it hurts. When the tube is inserted if pushed down to far, even if they pull it back when I say it hurts it is to late for me. It hurts inside and out for days to weeks depending how aggressive I am standing up for myself and taking all the steps listed above. It gets better as you get better, tell the person changing your tube don’t bother the nerves at the bottom of your bladder and if they do take immediate action. I have gotten weeks of misery down to days, not perfect but much more livable.

    Don’t let anything tug your tube. I use a statlock, the name of the device, to secure the tube to my thigh, when in pain I also use a wide leg bag strap above my knee. I use one of the velcro tabs around the tube. No tugs allowed. I keep my incision site clean, dry and covered allowing air underneath. I am careful my clothes don’t put pressure on the site and I sit so that my tube is not kinked. Read every post, learn your body and your health care team. You can make this work. I did and I am a slow learner, no choice but to listen to your body.

76. @ Laurie I’m wondering if the drug you mentioned phenazopyridine, is the same thing as oxybutynin? I have been using that for 2.5 years now for bladder spasams.

77. Never mind I just answered that question for my self, a female friend of mine told me that phenazopyridine is what they give her when she has pain when urinating. So I’m guessing that is something just for women.

78. Pyridium is the trade name of the drug, it treats pain and discomfort of the bladder and urethra. It is a prescription drug so your doc will explain how and when it is useful and the side effects. It will turn your urine bright orange or red and will stain everything it comes into contact with. It will ruin contact lenses and if you cry you will cry rusty tears. I could not get by without it, it numbs the urinary tract and allows my bladder to drain without discomfort. If your doc feels the drug is safe for you it works for men and women.

79. Laurie I have a question about something else you mentioned which was the statloc. I dont know if I have exactly what your talking about, my cath comes out of my bladder, and I tape it to my left thigh and I tape it like a left turn down my leg it that makes sense where i attach my leg bag, and strape my leg bag around the upper part of my leg with the let out valve being right around the otter part or my left knee. Just wodering what the statloc was.

80. did I mention when I gave the pre op urinalysis about a week before surgery they discovered MRSA in the urine! as freaked out as I was I went to every website and asked around as much as possible an I just want to throw out there that yea it is a dangerous infection but CAN be treated with certain pills so if anyone gets the news do not freak out as badly as I did because I’m just fine now no big deal :) just a FYI

81. Shawn, a statlock is a catheter stabilization device, that’s how it is described on my prescription. The best way to answer it is to give you the site http://www.statlock.com the type I use is called a foley 2-way. Tape can come off in the shower, or get pulled off during a transfer. A statlock will not move until you remove it. I change it once a week and to spare my skin I rotate placement to avoid irritation. Some folks can’t take advantage due to skin integrity or cost if not covered by insurance. I would not be comfortable without mine, accidental tube pulls scare me.

82. Laurie, thanks so much for the help. I went to the site, but tell me which one you use, as I did not see one that said it was for SPC’s. Again Thank You.

83. Hi Shawn, on the site under the top tab named product portfolio, you will see foley catheter about 1/2 way down the list, click that. Hit the Statlock stabilization device title in blue on the new page. I use the FOL0102. At the bottom right there is a pdf. read or print brochure. It gives all the info and useful pictures.

84. Laurie, Thank You so much for being kind enough to help me out.

85. I have a question and not sure how to handle this or even if I will get an answer but here it goes anyways, my husband just got a spc and he keeps getting sick and also he keeps pees his pants its like he is going the normal way but he has to much scare tissue to go that way thats why he has a spc, is this normal for a spc?? I have taken him in to emergency and they keep telling him not to worry about it, but I am very concerned, they did check to see if his soc was blocked and they said it was not and he is still ending up with very wet underwear and I am not sure what to do so if anyone can answer my question cause I am so worried that something may be seriously wrong, thank you

86. Hi Sherri, I’m only 2 mths into having mine and i wear poise pads most of the time now and didn’t before. Being female may be different but i think Graham said in earlier post that its ok. that it is like an overflow valve. Sometimes spasm can do it or a temporary kink in the catheter. It sometimes feels like pressure is relieved when it does it. I just got over a uti and felt flu like this morning with aches in all my bad places. I am trying to GO WITH THE FLOW, lol so to speak and improve my sanitary handling of everything. Others should advise you too as i am new to this.

87. I am so happy i am beside myself! I put two hose connectors like used on cars. The kind you screwdrive around a hose to make it tighter and WALA, no leaks and no tube came off in the night drenching me by morning!!!! I can’t believe we can send men to the moon but can’t make a locking device for the tubes to connect to a leg bag or a night bag. This was a cheap fix and i put tape over the clamp so it wouldn’t be sharp. Of course i feel like i just invented the wheel but welcome other ideas as well. Ronna

88. Hi Ronna, congratulations! A cheap fix is a good thing. I think you will find as you go along and get frustrated with the inconveniences this new thing presents you will surprise yourself how creative you can be.

89. Hi Ronna, Please keep in mind the catheter and tubing connections were designed to come unplugged before doing too much trauma (pulling) on the body. In time I think you will become very good with all of this.

    Hi Laurie, Thank you for the info on the Statlock Stabilization Device. I use these most of the time. Sometimes I will use the waist strings on my pajamas to tie the catheter close and prevent pulling. Recently the triage nurse told me of a patient that came in covered in blood after the balloon had been pulled out still inflated. I have observed several times at the hospital someone being transported in wheelchair or gurrney and have the urine bag dragging below. Over time I have become guarded and protective.

90. I just found your site tonight and after reading all of the posts, I decided to chirp in. I’ve had a spc for a little more than a year. To my horror, last Thursday, my spc came out. I quickly called the nurse to come to my home and was told that by the time she would get here it would be closed. She was right, the site closed within minutes. Don’t let yourself be fooled into thinking that you have a lot of time to replace the tube, you don’t. I am going in the morning to have the wound reopened.

    I dread going through all of the pain and uncomfortable feeling but the past three days reminded me why (urinating without control) I was so happy with the spc. I did have frequent UTIs in the beginning but found that when I changed to a silicone with a plated tip that I had a much better outcome. I do not change my own spc because I have neuropathy, really poor eyesight and severe ankylosing spondylitis. I am a female, 49 yrs old. Ready for the new bout with surgery! The nurse said I could have had it done in the office, I opted out!! I’ll be put to sleep and when I awaken, my spc will be back in… I pray! Thanks for listening… hope this helps someone else!

91. Hi, my hubby has an sp cath. We have mega trouble with the connections coming apart in the night and dumping urine in the bed. We tape the joints, but it doesn’t seem to help. Any suggestions?

92. Hi Bonnie, If you read a few of Ronna Burnett’s posts above (July 16 & 22) you will see she had the exact same problem as your hubby. Tapes and glues are messy and not always effective. Ronna’s solution was small vehicle type hose clamps.

93. Hi, I don’t trust tape. I use a Statlock device mentioned in a July 17th post. I also use a fabric and velcro Bard wide leg bag strap. I place it above my knee and use just one of the velcro tabs to secure the tubing to my leg. Even if my legs jump in the night no stress is placed on the connections or my belly.

94. I have an SPC and I use a plug-is there anything else I can use? My thinking is it would be great to have a valve like device to release urine–this would make it so much easier and less conspicuous when I`m useing the rest-room–Please Advise–Thank You

95. Well, I have had my 3rd change of my spc, each done by a different professional, Post infection… again! I just can’t get over how utterly toe curling painful it is!!!! This nurse who is so patient with me did realize that holding my abdomen down is so important. Relax… well i did my best. I will have a pilot check list of things to do BEFORE she comes. Take lots of my meds prior. I could use some versed. It bled alot and most of the day. It will be sooooo sore now for 2 weeks.

    Laurie and Mike are so much like my story. I am back to nitely soaking of my sheets as my hose clamp worked 3 times and damaged the cath. I swear even statlock doesn’t stick well and I even wipe real good with alchohol (on the skin). Should drink it before the nurse comes. Seriously I will not let anyone touch it untill they either knock me out or come up with a way where its not so painful it feels like my whole inards are coming out! My blood pressure was through the roof for about 20min after. I will also improve my hose clamp idea where it doesn’t eat the connection. Even a Dentist will inject Novacane first. I have the cream but this pain goes deep.

    So glad to know about swimming. even snorkeling at the coast Not our greasy gulf but elsewhere. Now…can i use the spatub we had for 5 mths before, now sits empty. My hubby thinks not as the stoma is still an open area around the cath. By the way, I know its your web site and if I knew how to i might but could you put a few beefcakes on your site for us women? Good luck to all.

96. Hey Josh, you’re on the right track. They’re called flip flow or Flip-Flo valves. It plugs directly into the end of the catheter or urinary drainage device and as the name suggests you flip a small lever to open. Some twist, others pop open, which is best depends on lifestyle and how much, and how strong, a persons hand function is. Bard sales support offer a free plastic lock to attach to their leg bag tap or Flip-Flo valve to prevent accidental opening.

97. Hi Ronna, sad to hear you’re not doing so well mate. As the statlock wasn’t effective and clamps are destroying your catheter or tubing take a photo of the plug and tubing that’s falling apart for me. It simply should not happen if you are using the correct equipment. Give brand names, make and model numbers etc I’ll look up my continence aids catalogs for you. Even if it costs a little more some top quality gear could well be worth a trial. Oh, send me a few men in wheelchairs images too, I’ll create a gallery and give you the keys to upload all you like ;). I’d love to hear more content suggestions for this website guys/girls.

98. thanks Graham–Where can I buy the Flip-Flo in the St Petersburg Fla area–Please Advise==Thank You

99. No idea Josh, you can purchase them on the internet from wherever/whoever you like. Or inquire at your local hospital, pharmacy and medical suppliers.

100. Simple and quick. Just, thanks for being here. I’d never heard of all this, but after 11 years of self straight cathing, it sure sounds good to me. Amazing how urologists don’t mention it. I’ve had only a few real problems, but the worst was being in the supposedly best hospital, then the best skilled nursing facility in the state and finding they didn’t have enough straight caths, I’m really, really ready to ask for this solution. Most of you probably know the problems you get into with cathing yourself in public places, or deciding NOT to until you get home, then OOPS!

     I have fairly mild MS of many years standing, that’s the source of this and other probs. But thanks for the wide-ranging, useful info.