A Supra Pubic Catheter or Tube is commonly called Super Pubic Catheter. I’ve had an SPC for 16 years now without to many problems. There is not a lot of first hand info on the net so I will share my personal experience. An SPC is a method of bladder management. A fairly simple procedure usually performed under a general anesthetic. An incision is made about three inches below the belly button and small hole poked in the bladder. Usually the incision is low enough to hide below your pants belt line. A catheter is inserted and held in place by plugging a syringe onto the catheter port inflating a 5 to 40 cc balloon with sterile water. The syringe is unplugged and drainage bag connected to the catheter flange.
It took three weeks for my Supra Pubic Catheter site (catheter insertion point) to settle and stop bleeding. I no longer keep it covered with any type of dressing. You must always keep a catheter in place as your bladder heals quite fast, in as little as ten minutes without a catheter you may not get another in. Your body treats the catheter as a foreign object forming it’s own tube around it from stomach wall to bladder. As your body is constantly trying to expel the foreign object (catheter) the catheter site never totally heals and will always require a little cleaning. We use an alcohol wipe each morning and night. I’d much rather my carer clean around the Super Pubic Catheter site than the pointy end of business (I’ll call him Sarge) as with indwelling catheters. Especially when your primary carer is family.
CHANGING A SUPRA PUBIC CATHETER
Silicone Foley catheters like these above are good for three months however I change mine every two months. Even then it often requires a little tug to remove. Some rotate the catheter frequently to keep it free. Sterilize all equipment and around the catheter site. Deflate the old catheter balloon by firmly plugging an empty 10 cc syringe onto the catheter port and drawing backward. Remove catheter taking note of how far it was inserted, so you know how far to push the new one in. Lubricate and insert the new catheter, inflate the balloon, it should then slip back a little and rest against the bladder wall. Holding the plunger depressed remove syringe and plug a new clean drainage device onto catheter flange.
We once pushed my catheter in to far, through the bladder and half way out my urethra. When we inflated the balloon it ruptured my urethra. Sarge was wounded by friendly fire! I bled from the penis for three days. The same can happen if it’s not in far enough. A little bleeding is common after a change or trauma (accidentally yanking the catheter) but it should stop quickly.
Plug a leg bag or whatever drainage receptacle you prefer. I use a 16 gauge Silicone Foley catheter with a 4-Sure 2000 cc overnight drain bag in a cover slip hung up under my power wheelchair. The 4-Sure is emptied morning and night, changed weekly. The boys get jealous when we have a session at the pub. They run back and forth to the bathroom while I don’t need to go at all. Check and top up the amount of sterile water the catheter balloon contains monthly as some osmosis can occur, you don’t want the catheter falling out when asleep etc.
LIFESTYLES - DIET FLYING SEX AND SWIMMING
Drink anything you like. A lower urinary pH can be of benefit in reducing sediment and bacteria causing UTI’s. Some pH lowering drinks, and those of general benefit to Supra Pubic Catheters are cranberry juice, coffee, naturally brewed beer, wine, buttermilk, distilled and filtered water. Eating like drinking is unrestricted, foods that lower urinary pH are meat, fowl, fish, corn, gravy, eggs, sour cream and whole grains. Please keep in mind it’s all about balance, a healthy pH range is between 6.5 and 8.0
Flying is no problem though be aware silicone slightly expands at 20 000 ft. Some like to use a smaller gauge catheter on international flights. The main reason I chose a Super Pubic Catheter was sex. How can I put this… Sarge is always battle ready, free to stand to attention at anytime. No folding an indwelling catheter back and covering with condom or having to do a quick self catheter drain to prevent leaking during sex. I’m good to go anytime. Now I need to find someone to have sex with! Haha. A friend tapes her SPC to her side during sex but I guess that depends how rough you like it. Drinking is essential with a Supra Pubic Tube (Catheter). It’s recommended you drink at least 3 liters daily to keep sediment levels down and the catheter eyelets clear.
Swimming is not a problem. Disconnect your drainage device and press a stint (sterile cone shaped stopper, can use anything really) into the catheter and splash on in. Avoid drinking to much before and during swimming. If for some reason the urine cannot be drained via the catheter you will usually bypass. The sphincter muscle which controls urination can only hold so much pressure before it will leak and you go the old fashioned way. That’s a good thing, while inconvenient at times it’s like a safety valve.
Sleeping puts your bladder into a dormant state, yes it sleeps too. Sleep on your back, side or front as long as it doesn’t kink the catheter or tubing. Having a large drink just prior to sleeping will help your urine remain clear overnight. Keep your tubing and drainage device lower than your bladder. I clip the tubing full of urine onto my bottom sheet so it can’t pull on my catheter. A quick look around this web site will show there is little quadriplegia or an Supra Pubic Catheter prevents me from doing in life.
URINARY TRACT INFECTION PREVENTION
You will never completely stop Urinary Tract Infections (UTI). Anytime you have broken skin you’re vulnerable to bad bacteria, especially when you have a catheter pointing the way in. Good hygiene is very important. I suffer less than one UTI/yr. The only indicator my urine has a stronger odor and is darker in color. Other quadriplegics may shake, shiver, sweat, suffer headaches, blotchy skin or possibly display anotomic dysreflexia symptoms. Females seem more prone to adverse reactions to UTI. The latest research suggests drinking large amounts of water to flush the infection through works as fast as antibiotics.
Hiprex tablets or Ural an anti-infection drink can help. Hiprex is a pro-drug absorbed from the gut passing into the urine where it’s hydrolysed to formaldehyde. Formaldehyde causes the breakdown of proteins/sediment essential to bacteria. However this only occurs if urinary pH is less than 5.5 acidic which is considered an unhealthy level. It’s a big pill to swallow and tastes like horse piss but they work. Recommended twice daily, one every three days was enough for me.
Cranberry products, naturally brewed beer and wine are also good UTI preventitives. I have a few beers near everyday and haven’t needed anti-sediment medicines for a number of years now. The site itself is also at risk of infection. If the Super Pubic Catheter site becomes red, warm to touch, crusty, scungy, tingles, smells bad and/or is pusy you probably have a site infection. A doctor can take a swab to confirm. Keep hair trimmed back away from the site as it promotes bacteria, exposure to the sun, saltwater baths, clean with an alcohol wipe morning and night, keep it dry and with good air flow all help avoid site infections.
Silver is a highly effective antibacterial substance which can be applied to various types of catheters. Multiple studies have suggested that silicone urethral catheters coated with hydrogel and silver salts reduce the risk of developing bacteriuria. Specifically, silver alloy catheters (coated on both internal and external surfaces) were shown to provide a significantly greater reduction in the development of catheter-associated bacteriuria over silver oxide (coated on the external surface only), silicone foley, and standard laytex catheters respectively. Silver alloy catheters cost around $5 more than standard laytex catheters but if you find you are prone to urinary tract infections they are worth trialing.
MEDICATIONS AND DRUGS OF BENEFIT
Infections at one time were so frequent we had to change my Super Pubic Catheter every two weeks. Bacteria grows on sediment and can build up blocking the catheter’s draining eyelet’s. We would use sterile bottled water or cooled boiled water and flush the catheter with a large syringe every few days. Then I found Hiprex (Mandelamine, Ural, Urex etc. - see “Urinary Tract Infection Prevention” above) or you may pefer to try D-Mannose. Everybody produces sediment, “regular” people just don’t notice it. Tell them to pee into a jar and wait 6 hours, they’ll see sediment.
With an SPC the bladder is constantly draining and over time may contract or shrink (like any muscle does) frequently spasming. The condition is called an overactive bladder. Ditropan, Vesicare, Enablex and Detrol LA are bladder specific muscle relaxants prescribed to prevent this. You can imagine how hard it would be to get a replacement catheter located correctly if your bladder was the size of a grape. Of course please consult your doctor before taking any new medications.
CEASING USE OF SUPRA PUBIC CATHETER METHOD
No need to be nervous wondering if a Supra Pubic Catheter is going to be the right bladder management method for you. If for any reason you become unhappy with the SPC it is fully reversible, just leave it out and resume your old method. Of course you must consult your doctor first, last thing anyone wants is a raging infection left trapped inside their body. Basically you restrict fluid intake remove the catheter cover the site and cease all activity for a few days to allow healing. Keep clean but avoid showering and over-distending the bladder. Generally the bladder will seal itself off within 10-60 mins, the catheter site takes a few days to weeks. Like I said however please consult your doctor first.
Kind Regards
Graham Streets
MSC Founder
What a great site! I’ve has my SBC for two years plus. My neurogenic bladder is a legacy of colon cancer 8 years ago. I self-cathed for the first seven, then had a golf ball sized bladder stone removed and the SBC placed. I’m 58 and an active outdoors man.
I have an ongoing problem with both plugged catheters and Urinary Tract Infections. My catheter has to get changed every month or it scales up and corks up tight. Of course this always happens in the middle of the night… Fortunately, I was trained to change my own catheters so it’s more of an inconvenience than an emergency.
For those who are considering this as an option my advice is mixed. I like the convenience of it (like you said… I’ll bet anybody a beer that I can drink with you beer for beer until YOU have to go to the head..) but it increased the frequency of my UTIs. Because I am very active the stoma can become irritated and bleed both externally and internally. Riding in a truck on a bumpy road is not pleasant! The jarring against the seat belt smarts! I’ve also found that two leg straps are better than one when wearing a collection bag on the calf. Put one high on the thigh and one just above the knee. Keep the cinch loose on the knee band so that the tubing can slip. It keeps the tubing off the front of your knee so that when you bend, it stays connected. That really soft “POP” you heard when you pulled on your leg strap is the sound of impending disaster by the way! I’ve also ruined a couple pairs of favorite sneakers when I caught the drain valve on brush accidentally and filled up my shoe on that side.
I picked up a couple of tidbits reading the comments above that I’ll try but my current inclination is to have it reversed and go back to self-cathing. I’m more worried about damage from the UTIs than the convenience is worth! Thanks!
Graham. Some time back I asked about installing a Supra Pubic Catheter. At the time you suggested that an Exterior Male Catheter (Texas Hood on this continent) might be an option as I still have considerable mobility. Thank you. I finally got around to trying it and to getting some supplies. No more frantically looking for washrooms! No more wet jeans! No more urinating in mall parking lots! On the other hand, it takes some getting used to sitting in my chair, talking to a lady and willfully urinating as we carry on a conversation. Not as easy to do as with a Foley, but much less risk of a UTI. I still intermit, but only once daily. Thanks again for your sage advice.
I’m particularly interested in hearing views from others with a monte stoma.
Hi Graham, I’m so glad I found this site. I’m a t-12 complete who has been self cathing for 15 yrs. I’ve run into some problems and am now using a uretheral Foley. My urologist and I both want this thing out of me. I have a false passage in the urethra and if he can’t pave over it with collagen he wants to go with a sphincterotomy (sp)and leg bag as he is against super pubic catheters as well. I read Tube Boy’s input from 04/07 00:57 about his navel spc. Have you heard of any other people using the same method? Thank you very much.
I had discussed with my surgeon pre op regarding the pros and cons of having my monte stoma attached to my belly button or ovary. Apart from a few minor difficulties after the op in 2004 this stoma has enhanced my quality of life and I would recommend it highly. I catheterize 4x daily via my stoma and no longer have the severe discomfort that I used to endure on a daily basis using a uretheral catheter.
Steve: Thanks for your tips! An SPC and self-cath equally carry minimal risk of UTI when done correctly compared to the other methods. Sterility is very important but lifestyle is too, it’s a matter of finding what works best for you.
BobS: I’m glad to hear things are improving. I remember once looking down at my old tan swede boots thinking why is one all dark lol. Peeing while talking to the ladies, I never really thought about it, that would be awkward. As my Supra Pubic Catheter constantly drains I joke, stop making me laugh or I’ll pee myself.. oh wait I already am.. haha.
Nick: 8% of people who undergo a sphincterotomy suffer complete loss of erectile function. It’s old school and less frequently recommended these days. See 18 Feb 2008. The only reason I can see against you having an Supra Pubic Catheter is irritation. As a T12 you probably have limited sensation where the SPC would enter. Though at the navel you would have even more sensation. If the collagen fails I would seek an alternative to a sphincterotomy.
Lorna (and Tube Boy) has a stoma. Usually performed if there’s no other viable way to drain the bladder or if the bladder itself is removed. In the latter case, a piece of the small intestine is taken and tied at one end to form a tube which is connected to the ureters. The other end is used to form a stoma, an opening through the abdominal wall to the outside. A stoma is much the same as self-cath only you pass the catheter through to the bladder via a different opening. It all comes back to sterility and good clean techniques.
Hi Graham: See, I DO keep in touch with your site! How are YOU????
Actually, I wanted to comment about Steve’s (11/4) post, calling the Supra Pubic Catheter opening on his skin a “stoma”, which, as you know it isn’t, but along those lines, Bill’s MD has brought up the possibility of doing an “ileal loop” surgical procedure on Bill because of all his annoying sediment, which we keep under control as best we can, (presently using all silicone catheters)…but STILL the sediment persists, especially about 3 wks. after the change. (an improvement, yes, but…), although, no big infections for awhile!
My question to you concerns the potential cancer risks. Do you know the risk of “ileal loops”? Frankly, I’m not sure it would be a better alternative convenience wise but if it is an even safer way than the pretty safe SPC, I’m all ears! The decision is ours. I would really appreciate your feedback, or how to get it. Bill’s MD is not a talker. Thanks as always, Anne
Hi again! I’m launching back into life after feeling quite rough for weeks ! I’m hoping to start swimming again soon, but I need advice on protection over my leaky stoma. Anyone have any idea where I can get product information because my specialist nurse isn’t used to a Monte stoma and the bags/pouches I’ve tried so far have been ineffectual. Not a problem by the way Graham, didn’t matter! Best wishes everyone! Lorna.
Hi Anne, An ileal loop is major surgery, not reversible and often in men the prostate is removed along with the bladder. Personally I would take a new catheter every three weeks over this procedure any day. Cancer risk is lower as you have less organs! Not many surgeons will take a reasonably healthy organ out. I’d advise regular blood testing and scans for cancers then if detected such a life changing procedure may be avoided or considered. I am not a doctor however. My best to you and Bill.
Hi Lorna, I’m not familiar with a “monte stoma”. Pop by your pharmacy and ask their recommendation of a covering, there are so many available. I put a sticky one on a pressure area once. With a stretchy clear center the half inch of sticky edge near peeled my skin off when removed. For most plastic “caps” are available that will seal closed the stoma during sporting activities. If yours is leaking between skin and stoma you may need further surgery to close it.
Hi Graham, I Knew it wouldn’t be long until I was back for further advice, I am so grateful to you for this site, it really is so helpful. I have now had my Supra Pubic Catheter in for 4 months, It certainly hasn’t been an easy 4 mths as my body just hasn’t wanted to accept it, I’ve tried so many different medications to stop the terrible spasms and bypassing and get the Supra Pubic Catheter to settle, to no avail, but finally I have been given Lyrinel XL that I started the dosage off at 5mg and increased it weekly until it made a difference, I got all the way up to a dose of 30mg before I felt any benefit, I now take 30mg daily and the spasms and bypassing are now under control. The problem I have is my doctor says they are only licensed to give me up to 20mg and although the hospital have sanctioned me taking the 30mg for now, this really can only be used as a sort term measure because my doctors are not happy about the situation. If I come off this high dose all my problems start again immediately.
My consultant has now offered me another option which is to have botox in my bladder, which he thinks will solve my spasms because my bladder would then be paralyzed. If this does become the answer I would be able to come right off all the medication and just have the botox topped up twice yearly. What I am wanting is your opinion on whether you think the botox is a good idea to try and if you know of any problems that may occur from going ahead and trying this procedure. Thank you Graham for your help once again. Kerry
Graham, Conflicting reports! Does a uti thrive in an acid bladder or an alkaline bladder? The world seems divided in two on this. Also Graham, am very interested the botox mentioned by Kerry above. Thanks again Graham, have a happy Christmas
Hi Kerry: The use of Botox to treat an overactive bladder is relatively new. The only study I’m aware of was 15 women in Scotland. Directly after treatment 14 noted reduced symptoms of urgency and frequency to urinate. The volume before urge to void also increased significantly in 13 women while the actual maximum bladder capacity increased for 10. Or, after taking 30mg/daily for 2-3mo you could most likely reduce dosage to 20mg/daily and see how you go. I would be inclined to try the botox Kerry, retreatment twice yearly is the average. There are two main risks with a Botox bladder. 1. Being to effective, the bladder can be so paralyzed you don’t void at all, however as you have a supra pubic catheter this won’t be of major concern should it even occur. 2. Injection into the bladder necessitates a cystoscopy under general anesthesia which carries the obvious risks. I would go for it Kerry, if it doesn’t suit resume the Oxybutynin (Lyrinel XL) treatment.
Hi Geoff: Both overly alkaline and/or acidic urinary pH increase the incidence of urinary tract and bladder infections in men and women. If you are regularly testing your pH between 6.5 & 7.5 is the optimum range.
Hello Graham, thank you so much for putting up this site. I think it pretty much answered most of my questions. My husband (of 19 years now) is 37 and was diagnosed with MS about 7 years ago. For the last 4-5 years he(James) has had an IDC, but he hates getting it changed and he refuses to do anything sexual for fear of pain. We have not slept together now for about 5 years as he sleeps in a hospital bed now. A week ago one of our care workers suggested we talk to his doctor about getting a Supra Pubic Catheter, so, as she put it ” he could get his penis back” My question is from the way she was talking it sounded more like this catheter would be able to stay in longer than his usual once a month change. But what i’m reading is that it is still just as often. I thought it would be more like a PD tube. I was on peritoneal Dialysis for quite a while so i thought it would be more like one of those tubes. Is there such a thing as a permanent catheter?
PS: sorry for the long story but it is nice to be able to talk to someone about this. thanks again.
Thank-you for your candid questions Sylvia. I gather the terrible pain during sexual activity is due to rubbing/pulling on the IDC. Hospital style beds are great for tying wrists to rails, teasing each other with scent, touch and taste (scented candles, lingerie, K-Y Jelly, guide his hand) if he objects lay beside him for awhile and listen. Given long enough (possibly weeks) he may think twice. However your method, my thought is to take the IDC out and bring him to climax. Could be next due change, a pre-planned wink to carer leave us alone till I come out and take control. Should it be relatively painless an SPC is definitely a viable option. Technically there is no such a thing as a permanent catheter as all catheters sooner or later need to be replaced, at best every three months. He may just need to be gently remind there are many ways to please a woman.
Thanks, Graham. I am in agreement with you, and consider it a little strange that his Urologist. suggested this out of the blue, when he hasn’t been much help previously in other areas, like you have. At the time, he was referring to the sediment problem. I had to bring Bill to the office recently to change his “stuck” all Silicone Catheter. after a month… due to the combo of his high coumadin dose, severe bld. previously explained, and etc. MD FINALLY saw the bad sediment problem for himself, and it was at that time he suggested the Loop Procedure. {Maybe the hospitals, MDs are needing extra money here due to the awful, Bush-inflicted economy}. (joking)? AnyHOO, I’m getting the previously more successful version of Methenamine from Canada now, and thus far IMPROVEMENT!!! (This week only, fingers are crossed)!
At any rate, I would get a 2nd opinion RE: The “Loop”, but prefer to clear his urine up better with other methods! Bill sometimes has to stop Cranberry Juice., R/T diarrhea which doesn’t help either. Any other type of Juice suggestions for his urine PH? Orange Juice is not recommended for him.
I see you are still giving your great advice. Your site is a blessing to all concerned! Sincerely, Anne
hi There ! I’m recovering from anesthetic, operations and having to be in hospitals too much during the last 2 months… I think I’m allergic to hospitals !!!!!! Have some interesting info to share when I’m feeling better… not sure if messages will go through on this site so will wait until they do ! Take care everyone x This site is such a support to me knowing that others understand this part of my life. Lorna x
Hoping your site is up and running, and that everything is OK. No response for quite awhile! Sincerely, Anne
Anne – Graham was going to spend the Festive Season away from home. That could account for the lack of contact. BobS
Hey guys I’m back and very busy. Apart from cranberry juice good sedimet reducing fluids are wine, naturally brewed beer, apple cider, diluted vinegar and lemon juice. All have been reported to assist in lowering urinary tract infections and sediment levels. We look forward to hearing from you Lorna. I hope you all had a Merry Christmas and I wish you all a Happy New Year.
Welcome back Graham! I had the best Christmas despite it all, just hope my daughter doesn’t carry out her threat of putting her Christmas video on Facebook :( I’m asleep with my year old Grandson on it! :)
One of the things that was highlighted while I was in hospital, fluid intake! sounds simple, but my urologist said that if everyone drank the amount of water that I do then it would be interesting to see the decrease in infections. I haven’t had a urine infection since I started looking after myself properly, part of that is I drink 8 pints of water throughout the day. At the moment I have a permanent catheter in my stoma and a ‘Flip Flo’ valve attached, making life a lot easier for now. I haven’t touched cranberry juice for ages because I got fed up of it, but I swear it made a difference. Caution to anyone with problem joints, my orthopedic con said the acid level in cranberry juice is not good for painful joints. I’m rambling! Take care all x Lorna.
Hi Graham. I’m kind of up against the wall right now. I have a moderate bleed through my trans urethra foley. My urologist said to drink copious amounts of water to keep it dilute. This started yesterday. I don’t know if this is the time to push again for the Supra Pubic Catheter since a bladder bleed is a bladder bleed but I know he’ll want to do the sphincterotomy. He’s doing procedures in the hospital right now so his staff is going to report this to him and get back to me. Any suggestions?
lol@Lorna, I’d like to see that video!
Hi Nick, anyone with a catheter experiences occasional little bleeds now and then. When frequent and ongoing something should be done about it. I would try a Super Pubic Catheter first as unlike a Sphincterotomy the Supra Pubic Catheter is easily reversible should it not work out for you. No matter what keep your fluids up.
LOL! made me smile ! I’ll see what I can do Graham!
Thinking of you Nick… remember it’s YOUR body… unless the laws are different over there nobody can make the decision for you. I agree with Graham… easily reversible. I’ve been having trouble with bladder bleed recently so you have my empathy.
HAPPY NEW YEAR everyone ! I started the New Year TTP… how about you guys ? The Joys hey ? !
Hi, Instillagel is a local anaesthetic and lubricant for mucosa … can be used urethrally and in my Monte Stoma… It makes life a lot more bearable for me ( understatement ! ) because it reduces the risk of tears ( I used to get torn quite a bit when not using this Gel and rarely tear now ) Does anyone else use it? I’m feeling so much better now and not sleeping so much which is great… have things to do ! Right now I’m off to play with my delightful Grandson and feel very lucky with my life despite it all! You guys on here have really kept me going x Thankyou x Lorna x
Hi Graham & peeps….I had my SPC fitted on the 3rd January and spent 5 days in hospital due to complications during op. They apparently flush your bladder with a massive dose of antibiotics before inserting the SPC & unfortunately I had an adverse reaction to the antibiotic used. I spent nearly 5 hours in recovery as they couldn’t send me back to the ward in the state I was in. (I was told by a nurse the day before I came home that I had been overdosed in recovery, although she was not supposed to tell me!)
The Supra Pubic Catheter responded well on the Saturday through to Sunday evening when I flooded down below, so they reinserted an urethral catheter & put me on Oxybutynin Hydrochloride 5mg 3x times daily. I was told they take 2-3 weeks to start working but I think they may be the reason why I am feeling so ill as I am very chesty & my breathing keeps going shallow & my body is involuntary jumping every so often. I also have a terrible feeling high in my stomach on both sides. My inhalers are not responding to the wheezing & rattling in my chest as they normally would do. I don’t know whether it is the tablets as I came home with lots of medication & am only now left on the oxybutynin & Tramadol daily.
The district nurse comes Monday, Wednesday & Friday to change my dressing after a shower (not allowed baths until healed)but I have no pain at all around the SPC site which is good as I was dreading it before I had it done. I had to stop the district nurses removing what they thought was a dressing as the doctor told me the SPC was immature & needed to crystalize around the site. They have never seen the procedure done in this way before & would like to know if other people have had it done like I have?
Anyway to cut a long story short, I am now awaiting further surgery which I find distressing as I wanted them to do it all in one go, but my consultant believed the SPC would work on its own. 3 options are on the table which is the closure of down below, non reversible, collagen injected every 3 months or where they connect the bowel with the bladder & both exit the same site. I go to see another consultant on the 5th March to talk through the options.
I hope everyone is ok & just so glad this site is here. Suzan.
This site is a godsend, and I can’t thank you all enough for the info and posts above. Here’s my problem. After successful seed-implant treatment for prostate cancer around 10 years ago, Dad developed strictures and difficulty urinating about 18 months ago. His docs (north of Boston, MA, @Lehey Clinic) performed a TURP and then cathed him. He developed chills and fevers so bad that he’d shake the blankets right off. The TURP didn’t heal right, he continued to have blockages, had another TURP, had to self-cath twice daily to keep things open, and still no success. His primary care doc doesn’t believe in “over-medicating” so dad received no antidepressants or pain meds other than ibuprofen after these procedures. He started walking hunched over like an old man because of the pain. Developed a bulging disk in his back that required treatment this fall.
Finally, in October 08, they inserted a supra-pubic catheter, which at first seemed to help, but he developed blockages and had to have it changed. They taught my mom to irrigate it twice daily and for a while that worked, but then it blocked again, plus he had renewed discharge, blood, fluids, and tissue from his penis, as well. Back in last week for yet another TURP and a new SPC. Blood pressure dropped dangerously and a high white blood cell count suddenly appeared. They checked him into ICU but released him Friday. By Sunday, tube blocked again, despite irrigation, and it was back to the ER. New tube placed, sent home, tube blocked again, back to ER Sunday evening. Another new superpubic tube placed, sent home with orders for a visiting nurse. She irrigated Monday afternoon, still not working, still bloody discharge through urethra, back to ER, new tube, and admitted for ANOTHER TURP today.
Please, any recommendations any of you might offer at this point would be such a blessing. My dad is only 74, bright, active, and alive, but this past year and a half has been utterly devastating to his life, his health, his dignity, and his spirit. He can’t take much more–he’s giving up–and my poor mom is exhausted trying to care for him all on her own, because I have 3 young daughters and live 600 miles away–thus can only fly home for short week-long visits as often as possible. Most cordially, Deb
I’m sick fed up of my bladder and associated problems at the moment, so your encouraging words cheered me somewhat.. was worse before stoma so I’m back to being positive now. I’ve had a good start to the new year despite the obvious.. had another video taken of me and my Grandson asleep again today! On the beach hey… we have snow and frost here! Lorna x
Hi Graham… First let me wish you a Happy New Year.
I am having my Supra Pubic Catheter done tomorrow after having gone back for a 2nd opinion with the Consultant. He wasn’t impressed when I told him about your website & became rather shirty with me by telling me that “You are quite welcome to get your treatment off the internet if you want to!” When I raised my concerns he understood my concerns.
He agreed that I could come in the day of the op instead of the day before. I brought some baby teething gel, but where do you actually put it to relieve pain? I have not been able to get any alcohol wipes though. Will let you know how I get on when I get home. Thank you, Suzan
Lorna, Thanks for the words. It’s nasty here in upstate New York too.
Suzan: I hope you’re feeling ok post-op. ~hugs~ Many doctors frown upon internet medical advice as some people misdiagnose and mistreat themselves. That’s not what you are doing. You’re simply researching what they are going to do to you and learning from people who first hand, actually have an SPC. I point out again I am not a doctor. The teething gel can help ease any discomfort you may feel at the site (catheter entry point). I would avoid this for a few weeks for sterility reasons until your site heals as much as possible. Rest as much as you can for a few weeks to aid healing. Instead of alcohol wipes some use vinegar on a tissue or soft wipe, the vinegar acts as a sterilizer. You could also use a hand sanitizing solution.
Graham… I am a registered nurse and relatively new to home health care. Thank you for your courage in putting this information out for all to share. You input has been invaluable to me as I have only experienced patients in an in-patient setting. Your perspective on home care of the Supra Pubic Catheter was incredibly helpful. One question I have is how long I might expect the external “stoma” to resolve on my elderly patient. I am presently providing wound care once per day and after almost two weeks, I don’t see any significant healing, although the site is free of infection – the site is actually more open than I would have expected from previous SPC placements.
What is your perspective on the wound status (sight unseen, of course)… Respectfully, John RN
Hi John, Thanks for your kind words. My Supra Pubic Catheter site (catheter entry point) took about 3 weeks, most take between 4-6 weeks to heal though many never fully heal. Elderly take a little longer to heal in general. The same applies for an actual Ostomy type catheter stoma. Some will form a tight clean seal requiring little maintenance where others look inflamed weep and will always require regular cleaning. Being infection free, restricting activity, healthy diet, sunlight, keeping it as dry and sterile as possible all assist in a speedy well healed site. Supermodels use hemorrhoid cream under their eyes to reduce wrinkles and puffiness. If 8 weeks post-op it’s still a worry ask her doctor about using one (do not apply to open skin) to tighten and shrink down the site/stoma.
Hi Everyone x I’m picking up and the bladder bleed has stopped again, have had a day where I haven’t been having deep sleeps most of the day! WIPPEE! I swear a substantial intake of coffee and chocolate has helped to stabilize things LOL! my cookie sense of humour keeps me ok too! Thinking of you Suzan… wish you had my specialist team, they are open to new ideas… see their patients as the experts and find TTP (Taking The Pee ) funny even though I used the less tame version in the hospital on my charts ( I thought charts were there to amuse me? ! no?! tough!!!!!!! ) We have come a long way from the days when one would be paraded in front of a bunch of doctors with all dignity removed, don’t let anyone revert to that. Usually a gentle nudge of the verbal variety works wonders. Hope you’re doing better too Nick x Will be adding myself to site forum when my brain is not so desperately in need of a Granny-nap Graham! Take care all x Lorna x
Lorna: I’m glad to hear you’re feeling better.
Hi Graham et al: The latest on Bill and his SPC is that the Urologist/Asst. hasn’t seen many sediment problems as bad as Bill’s, despite our carrying out the correct interventions, including all-silicone cath; with the only exception that Bill can tolerate just so much Cran. Jce before he has a rather nasty diarrhea problem. We usually mix it w/h2o. I have been getting Methenamine MD from Canada, as the US doesn’t make it anymore…but the MD states the dose is 1 GM. 1x qday w/Vitamin C, (although directions on Canadian bottle are Meth. MD 4x/day). USA MD states it’s too much (??!!)… so it isn’t working for the sediment much anymore. MD found a Proteus Infection, which he is treating w/Ampicillin presently. No fever, but urine back & forth w/color/consistency. Neither Bill nor I want the Ileal-Loop surgery…as far as I’ve been told, there is no Cancer present at this time. Any suggestions would be most welcome, especially specific Proteas infection in urine, as he’s had it before.
Hope you are doing well! Graham, sounds like you had a great New Year Holiday!
Hi all x Still able to TTP despite having a kinky tube! Having a chat with specialist nurse tomorrow…will ask about sediment and what she’d recommend and get back to you Anne. Not sure what they give over here (Britain) because I haven’t been troubled by sediment since using copious amounts of Instillagel ( I wonder if that’s why ? !) both urethrally and in my stoma. Maybe my huge intake of coffee?! Have found a covering that works so I can start swimming again as soon as my bleeding bladder (pardon the pun!) gives me a break! Next year’s Swimathon here I come! Take care all and Thankyou Graham! Lorna x
Anne: Drinking additional water and/or certain fruit juices (eg. cranberry, plum, prune) and increased protein in the diet while taking methenamine ensures adequate hydration and acidity of the urine. I recommended Bill avoids citrus fruits and juices (e.g., orange, grapefruit, lemon), milk and dairy products, and antacids. These can decrease the effectiveness of methenamine. The standard dose is indeed 1g 4 x daily (every 6hrs). Proteas can get nasty and often require two full treatments of antibiotics.
Lorna: Glad to hear you’re on the mend. You’ll be swimming in the Olympics in no time!
i have spc my dr told me that it can never come out i lost my kidney 2004 and i have all so have had a stork to thats what is what happen to my bldder i wish that i could get it out but i cant so i just have to live with it i am really sick and i have to be carefull i cant be around any one that is sick it gets really hard to handel some time but i ask god to help me me and he gives me the streath to keep going ann
Hi. I’m going in on Friday to have an SPC and didn’t realize it took so long to heal. I’m taking a 40min flight on the following Friday for a week and never thought to mentioned it to my Dr. Do you think it’s going to be too early for me? I’m also planning on going to Mexico in April but was reading a comment about the air pressure in a plane not being good for an SPC? I was thinking I wouldn’t have any worries with flying once I had the SPC.
Ann: The internet is great for people who can’t get out much. You can make friends and find people in a similar situation to you just like all the good people on this page. Hang in there.
Cathy: It will be fine to fly. Ideally it’s best to remain inactive and lay prone giving the best chance to heal but it’s not always that easy. Most people just continue on with their daily life the next day. I’ve heard silicone expands at 22K’ but have flown many times no problem. I would be more concerend about DVT (Deep Vein Thrombosis). You’ll be fine Cathy, enjoy your trip! Send us a postcard ;)
Hi Ann, My thoughts are with you…I used to feel really isolated where my ‘hidden’ disabilities are concerned.. most of my friends are a bit freaked out by ‘medical stuff’! I have found this page to be such a relief in feeling less isolated with this because the folks here really empathise. Lorna x
Lorna: Thank You. I’ll take any info’ that might be useful. Can I ask what you mean by “Instillage”?
Ann Powell: Hang on in there. Things seem to be bad everywhere. The blessings are things like this site, and of course, the internet. I feel for other people around the world! Anne
Lorna, et al: Thanks for the response. Bill does not have a stoma, per se…but a “healed over” small opening from his bladder to his lower abd. where his SPC comes out and into his leg (or other) bag. I’m sure you’re aware of the differences, but some people may not be. Those should refer back to Graham’s previously written explanation of their differences. If Bill’s bladder were to come out, which we DON’T want to happen…then, he would have a piece of intestine surgically placed to make the stoma…which resembles a small colostomy (bowel) “stoma”…no tubing involved; ie, little chance of inflammation/infection from the pre-explained catheter “rubbing, etc. causing most of his problems w/sediment, and fairly frequent infections.
Lorna, and Graham, back to you: Bill follows a good diet regime, but doesn’t take quite as much fluid give him. He has a diarrhea problem when he has more than his body can handle. still a good amt. Otherwise he follows similar practices to those outlined above. I finally got ahold of a PH dipstick tester, (which doesn’t seem to be done much here for a SPC’s), and found Bill’s PH to be 8 prior to taking the Antibiotic RX he’s on now for 10 days. It’s now gone below 7. He doesn’t overdue it on dairy or citrus foods, either. Perhaps his body just “likes” him to have an alkaline leaning urine. I’m aware infs. grow more in that environment. Strangely, the Urologist hasn’t even addressed that issue like I did, mainly from your site info’. Perhaps there’s a medicine that would be safe and lower his PH w/o the antibotic. I will have to “feed” this info’ to his MD. MD is local (North of Boston), but for the most part, I’m not impressed with the ones he’s had even in Boston. They are always in too much of a hurry with our dumb insurance system. system!!! Although I present only relevant questions to them…I get the feeling they consider it a P.I.A. Thankfully, his MS MD, and GP are top-notch!!! Hope you are all well.
Hi, I suffer from Cerebal Palsy and need a carer and a turn-table to use the tiolet. I’m young (23) and craving independence and decided that an SPC is the way to go. I’m off to the hospital tomorrow to see the consultant again. I’m hoping to get an idea of when I might be able to have the op. Is it simple? How long does it take? Will I have to stay in hospital for long? Generally how long have people waited? I know it varies from hospital to hospital
Hi Graham: Could you address my last question(s) placed on this site, as it seems that I got misplaced. At any rate, my interests remain with this site. Thank you in advance, Anne
I’m not sure what you mean Anne.. pH? A pH of 7 is not bad and I don’t know what more Bill could do as you guys have tried every trick in the book. Might be worth asking about different drugs as you suggested.
Kate: It is a fairly simnple proceedure taking about 20 minutes although as Suzan found it doesn’t always go as planned. Boy you had a rough time of it Suzan. I didn’t have my bladder flushed with antibiotics and don’t see the need for it. The only prep I did was drink alot of water. Collagen treatment is becoming more popular and certainly worth trying before any non-reversible option IMO. I had a general anesthetic, was staying in hospital at the time and healed in about 3 weeks. Most hospitals will want to keep you in at least overnight due more to the anesthetic more than SPC op. A buddy of mine had a local and the supra pubic catheter installed while sitting in his wheelchair watching then drove his chair home. Suzans 5 days and 3 weeks are the average durations.
Hi all, Good news. Went to this hospital today and we’re all systems go in about 5-8 weeks! So pleased! I’ve decided to go for a general so will have to stay in over night. I’ve finally joined the club. lol
Although I have two catheters at present, I can put the urethral on a 750ml leg bag, but I have to keep the Super Pubic Catheter bag as 2 litres until I go back to the hospital. I have an electric wheelchair. I can see no place to put it. I have been told, it must be lower than my sitting position. The district nurse told me I will have to hold it, but as I can only use one hand which I use to operate my chair, this option will not work for me. Do you know of any gadgets that are made for this purpose as I can not be the only one with such a problem. Thanks Suzan
Kate: Glad you’re pleased. We’d like to hear all about your experience.
Suzan, Anne & Everyone: You should all be able to post in the forum now. I answered you there Suzan and posted some photos I took this morning.
Hi Graham, I believe the reason why they flushed me with antibiotics was that I had a urine infection on admittance to hospital. I was under the impression though that all patients who have the Super Pubic Catheter fitted have it done to prevent infection of the insertion of the SPC here in the UK.
Thanks for your reply in the forum, I telephoned the wheelchair technician this morning & showed her where to look at your pictures. She has a Nike bag she is giving me that her son got his new trainers in! (how lucky is that?)lol. She is coming to see me this Thursday & hopefully get it sorted before my appoinment on Monday the 2nd Feb.
Hope everyone here is ok?
Hi Suzan, Having read your message telling of your recent problems having your Supra Pubic Catheter fitted in January, I can relate to you so much because I too have had problems since having an SPC fitted last August. I know for most people they work perfectly from day 1 but with everyone this isn’t the case.
I have Cerebral Palsy and am wheelchair bound with no sensation in my bladder so when last year my consultant recommended a Supra Pubic Catheter, I thought it would be the answer to all my problems and eagerly agreed. I went in and the operation went perfect apart from an awful lot of pain from the site (which was to be expected) the catheter drained perfectly and I was discharged. Within a few days at home the site got more and more painful and I started with the worst painful spasms I have ever had, I also continually because of the spasms bypassed most of the day until in the end I was almost bedbound for over 3 months because the spasms were so bad I couldn’t sit up in my wheelchair. At the worst point my catheter blocked 1 night and district nurses came to change it, but they took over 2hrs to do a job that should have taken 10mins because my catheter wouldn’t pull out as the spasms were pulling against them. They said they had never experienced anything like it and had never had such a traumatic change.
After trying many different medications to no avail I too was started on oxybutinin 5mg daily that each week I increased until eventually after increasing this up and up weekly I was on a dose of 30mg daily (higher than a recommended dose of 20mg). It was all ok’ed by my consultant and although the spasms became slightly more bearable and I could sit up again, they still continued every day. The side effects were awful and my dry mouth was unbearable, plus I couldn’t stay on such a high dose.
Last Friday I was taken in to have botox on my bladder. Apart from the initial soreness and getting over an operation this seems to have worked perfect, I havent had a single spasm or bypassed once and for the first time since I had my SPC fitted 5mths ago I am pain free!! There are some down sides, my consultant has said it may
keep me pain free for 2 mths and then I have to go through having it topped up but then again it could last longer.
I wanted to contact you to say although to most people the SPC procedure works well from the word go it isn’t always the case, and although I have had many problems with it I perserviered and hopefully it has now paid off, and will help make me more independent which is why I had it in the 1st place.
Thank you soo much Graham for this wonderful site, it is so much help and support, so thank you very much.
Hi Kerry, Thank you for your info on your experience. It certainly hasn’t been plain sailing for either of us. I go to the hospital next Monday to see the surgeon who performed my op, although I have to see another Consultant in March who will be performing the further surgery I need. I am a little hesitant about having the botox as it is a poison being put in to your body, but can you tell me if you stayed in hospital & how they did it to you please? Are you awake or do they sedate you? I am sorry to hear of the unpleasant problems you experienced like myself, but glad you are feeling a lot better & free of pain now.
I have stopped the cyclizine after taking notice of what Graham said to me on the forum & will see how it goes.
I am still bypassing although I have 2 catheters in & spasms occasionally which are extremely painful, but I have no pain around the wound thank goodness. Catch you again soon. x
Hi Suzan, I really do sympathize with you, all the bypassing is so unpleasant, after all that is why we had the super pubic catheter to stop wetting and bypassing. All I can tell you is from day 1 of having it done I bypassed and since having 300ul of botox on Friday I haven’t bypassed once and 5 months of daily spasms have cleared up instantly.
I went in on Friday at 8am for the botox at 11am and was back on the ward by 12pm home by 3pm. It was over and done with fairly quickly with no overnight stay, the only thing that I was surprised about was I had to have a general anesthetic instead of a local sedation and I had been told it would only need redoing 3 times yearly and yet on Friday my consultant said he would leave it that I contact him when my spasms next start and he will redo it immediately and he thought I’d be contacting him in about 2mths. Which suddenly is a much bigger commitment up to 8 times yearly, but until I need it doing again im not sure how long it will be as this is the 1st time, obviously it could last alot longer, I will have to see. I must say there is no way I could have 8 general anesthetics a year so I will need to discuss having it done under other methods if it is something im having regular.
I understand your worry about the toxin of botox but i can only tell you i have been fine and feel great from it. I really wish you well Suzan and just hope my experiences can help answer questions for you.
As you may or may not know, I’m having a Supra Pubic Catheter fitted in the near future. Just been having a chat with a friend who is also considering the same thing. We were both wondering if you have a spastic bladder, does it leak around the entry wound?
Kate: I had slight bleeding around the wound after the Supra Pubic Catheter was fitted which is quite normal. I have my dressing changed 3 times a week as I have to keep the site dry. Unfortunately the SPC only worked on it’s own for one day before I was refitted with an urethral catheter too. Like Kerry, I still bypass & have spasms which I now take Oxybutynin for. They do help, but I don’t like the side effects so will ask my consultant if he can put me on an alternative tablet.
My wound doesn’t hurt at all unless it is pressed. As Graham advises, it is best to rest after having it done to aid the healing process. Good Luck & let us know when you have had yours fitted. x
Kerry: Thanks for the info. I am glad to hear you have stopped bypassing & for the moment free from pain. Did they tell you why it is done under general anesthetic? I am pretty nervous about what they will advise me to have done when I see another consultant on March 5th. All I know is that I can’t stay as I am as it is impracticable & restrictive.
I got my letter today about going in to have my SPC changed in April. Do they sedate you when changing the first one? I’m scared it’s going to hurt as I am a big baby when it comes to pain lol.
Take care & I hope you will continue to feel much better.
Kate: Suzan was spot on. It’s common to bypass (leak urine) and bleed very small amounts for awhile but that should cease in 3-4 weeks. Anyone with a spasmodic or overactive bladder causing leakage should be prescribed a drug such as Ditropan (Oxybutynin), Vesicare, Enablex and Detrol LA. These relax the bladder and prevent leaking and/or bypassing around a Supra Pubic Catheter or any catheter for that matter. If unsucessful collagen may also be injected into the neck of the bladder (drainage point) to fatten the tissue further tightening the seal around the catheter.
Suzan: I’ve never heard of anyone being sedated for a catheter change. If worried ask if you can take a few codine (not asprin) and tell them to use plenty of Zylocaine or Lidocaine (numbing gel) before and during the change. My cares whip the old out and new in with no pain at all. Often I feel a little flat afterwards but that’s more due to being a quadriplegic.
Hey guys and gals. What a relief finding this page, God bless you Graham for making something like this. I was in a really bad motorcycle accident back in Novemeber. To make a long story short, I now have a colostomy and a SPC. I’ve had both since the accident, and they’re suppose to be reversed once all my healing and other surgeries take place.
Anways, even though I’ve had the SPC since November 16th, bladder spasms only started two nights ago, about once every hour, lasting for five to six minutes. I called the Doctor and he perscribed my Detrol. Well, how long does it take to work? Its been 7 hours and I’m still getting the spasms although they’re now coming every 45-90 minutes and only lasting 3-5 mins now. The spasms started when I was having alot of sediment in my urine and was blocking the tube, causing us to irrigate twice a day. Me and my wife were not educated very well in what problems to expect with the SPC so we’re learning as we go.
My friends set up a website for me in case anyone wants to see it. Under the “What Happend” link tells the story of what happend to me and what all I damage. Its pretty crazy.
Thanks again folks, this site and the comments here have been a huge encouragement to me and my wife. We don’t feel so alone anymore.
Whats the deal with showering with an SPC?
RSpears: Reaching the maximum effect of Detrol like any of the inhibitor medicines will vary from person to person. Generally it’s full benefit is achieved in 48 to 72 hours. Drink 3+liters/day and if you still have a sediment problem you could try Hiprex. You didn’t leave a link to your page?
Kate: See the previous comments, specifically Kitty on 08 Oct 2008, Josh and I gave responses on showering.
Oh yeah, my bad. The website is http://www.rodneyspears.org
Update, I ended up going to the emergency room to have the tube change out because the blockage was so bad we could not even flush it anymore. My urologist wanted me to wait another 24 hours before doing anything but I’m glad I went in that night. My tube was completely blocked and doctor there said what was causing the spasms was my bladder was so full it was spasming from being full.
Anyways its all better now. With a new tube I feel like a knew man.
Hi all…well what a week I have just been through. In my last comments here I mentioned how ill I felt & wondered if it was the medication that was causing it. I got worse each day until at the weekend I started having nose bleeds & vomiting & coughing up blood & was rushed into casualty by ambulance. My temperature was 39.3 & my blood sugar up to 8.4(whatever that means) & my heart rate was too fast according to the ER doctor who attended me. They started me on IV antibiotics & saline straight away. I didn’t relize my wound was bleeding as I had cancelled the district nurses last week who come to change my dressing after my showers as I was only having bed baths due to feeling ill. (shower or no shower I will be having the nurse come from now on. lol)
I had caught a bug from Guys hospital according to my local hospital although they didn’t tell me what bug! I am now on liquid antibiotics & off the Cyclizine altogether. I still have to take the oxybutynin until I see the consultant which has been delayed til the 2nd March.(We have terrible weather here in UK & transport greatly affected so all clinics were cancelled). I have a lot of sediment in my SPC bag due to not being able to drink much fluid last week but trying hard to drink more now the infection is going.
Graham they sent me home with diclofenac sodium gr ec 50mg but they give me terrible heartburn & you can’t take indigestion remedies so I have stopped taking them. Do you know what they are?
Glad to say I am feeling much better although I am still having trouble swallowing food so still on soup, spaghetti or beans diet.
The wheelchair technician fitted the carry bag with zip-ties to the front of my wheelchair which will hold both 2 litre bags thanks to Grahams photos which he posted for me on the forum. She was quite impressed! I was ecstatic as I keep my dignity from prying eyes lol
Welcome Rodney, I enjoyed reading your website & pray that God will continue to heal you & I wish you a speedy recovery.
Love to everyone & I hope you are all feeling a little better each day.
Hi, I have been doing intermitent caths for 32 years recently having bleeding, procedure has not changed. Is there a better catheter I should try? What would you suggest?
Hello everyone xx First time I’ve been at the computer properly for ages. Read everyone’s news since the last time I was on here (just had op and was feeling pretty low about it all back then) the worst I’m having to put up with at the moment is toothache, would rather toothache to bladder and bowel spasms any day!
Suzan: Diclofenac Sodium, another name for it is Voltarol. I take 150mg daily and thankfully have none of the stomach problems that are typical for most with this and Ibuprofen. Voltarol can come in injection form and slow release tablets, worth going back to ask about options.
Robert: I used to catheterise Intermittently prior to having my Monte Stoma, I now have to use male catheters because of their length and position of my stoma. I often go back to LoFric catheters, but find them more difficult to use because they are SO slippery. I’m currently using Bardex catheters which have a hydrogel and Bacti-guard silver Alloy coating. I have never had bleeding with the LoFric and never had an infection whilst using the Bardex. Will happily put codes/addresses on here or via Graham if it helps?
Kerry and others: You all have my empathy with Spasms xx Kind Regards all xx Lorna.
Hi Graham, my band played at the world wide special olympics in Boise Idaho a few weeks ago. We flew Northwest Airlines and I have to say they were very accomodating in all aspects of our individual needs. A couple of suggestions for those who will be flying are to bring your w/c cushion (it was’nt counted as a carry on)and if possible arrange for a bulkhead seat. My legs are as limber as it gets and I could pick one up at a time and prop them up against the bulkhead wall thereby keeping them elevated. I’d explain this to the flight attendant before hand. If you can’t get bulkhead try to get an isle seat and if possible turn as far as you can to get your legs out and set them on some carry on luggage to elevate them a bit. This might all sound kind of weird but it beats a blood clot.
Thanks,Nick
Hi Everyone, I had last written on this website before I had my SPC done on Jan 15th. It’s not been too bad I guess compared to some of the note3s I’ve read. Like you Rodney, I had to have mine changed on Feb 15th due to being completely blocked, I guess from the bladder infection I had? It also took along time to get it out as the ballon dcouldn’t seem to deflate?? Finally after ultra sound and xrays they managed to get it out. Quite the ordeal, but I’m happy to say things are working great now. I’m getting quite used to it and am greatly enjoying not having to get on and off the toilet every 2 hrs!! I have MS and transfering was getting extremely difficult. So life is good now. I can go out now and don’t have to worry about finding a bathroom. And I can have more than one glass of wine!! I’m wondering about a bag to hold the bag for warmer weather when not wearing pants. Someone mentioned that Graham had some pictures of one??? I’m heading off to Mexico in April and I’d Love to see them. Which brings me to another question. What about going in the water with an SPC? Can it be done? Anway the SPC has been a great improvement in my life.
I`d like to know if there are any support groups in the st. petersburg fl area–this is a great site but I`d like to meet people personally
Nick: I’m glad things went well for you and thanks for the advice. I’ve flown several times without to much drama. I have however suffered two DVT (Deep Vein Thrombosis – blood clot in thigh) and a PE (Pulmonary Embolisim – blood clot in lung) due to imobility, while annoying a little spasming is often better than none. I take a 100mg asprin daily now as a DVT preventitive. Some quadriplegics are simply more susceptable than others. But enough on that, this page is for Supra Pubic Catheter info. You should join our forum Nick and tell us all about your trip in the Disability Travel Transport & Holidays section.
Cathy: Welcome back, I’m glad to hear it’s a positive change for you, I was worried about your level of sensation. When deflating the balloon make sure the syringe is plugged onto the port firmly and draw back. We once tried to remove a catheter half deflated before realising the syringe hadn’t been plugged on hard enough. Many also test inflate/deflate the new catheter to ensure correct operation just prior to insertion. Sounds like you had a faulty catheter though. The cover bag pictures are on our forum here. I guess you have a leg bag? You can purchase hip bags to wear under shorts or use a tap or spiggot. Swimming or mud wrestling for that matter once your Supra Pubic Catheter has healed nicely (3-6 weeks post-op) is not a problem as described in the article.
Hi Graham, my band played at the world wide special olympics in Boise Idaho a few weeks ago. We flew Northwest Airlines and I have to say they were very accomodating in all aspects of our individual needs. A couple of suggestions for those who will be flying are to bring your w/c cushion (it was’nt counted as a carry on)and if possible arrange for a bulkhead seat. My legs are as limber as it gets and I could pick one up at a time and prop them up against the bulkhead wall thereby keeping them elevated. I’d explain this to the flight attendant before hand. If you can’t get bulkhead try to get an isle seat and if possible turn as far as you can to get your legs out and set them on some carry on luggage to elevate them a bit. This might all sound kind of weird but it beats a blood clot. Thanks,Nick
Thanks for the info Graham. and that’s great to know that I can go mud wrestling!! What is a tap or spiggot? and what doews one do with the bsg while swimming? Yes, I have a leg bag. I’ve I a couple of different ones. Just trying to figure out what works best for me. I’ll go check out a hip bag. I’m going to see a seamstress I know to get her to make me a bag for the bag. I have and idea for one but I also like yours. Do you buy them somewhere?
Robert, I obviously can’t say if the bleeding is from the same cause or not, but I had a similar situation.
In my case, my prostate had become irritated and swollen. The catheter was hard to push in and bleeding resulted. I ended up with a different type of catheter – called coude (there is an accent on the “e” – it’s French). Basically it has a spoon shaped tip to help get around the prostate. Some have a coloured stripe to make sure that you guide it in properly. As time went on and I became more comfortable with them, I went to a variety without stripes. They were considerably less expensive. For the last while I have been able to revert to the normal ones. (Less expensive yet.) As you likely know, intermits are a bit of a bother, but they have less of a bug problem than the other types – provided proper hygene is used.
Hope this might be of some help. Cheers, Bob S
Have decided to go for the SPC. Scheduled for March 20. Being a Quad lot less trouble then intermits 3x day. Any advise…
In this country, there doesn’t exist a site like yours. Why is that, I ask???
Anyhoo, Graham, geetings per usual. I just saw the movie, “Australia”…is it descriptive of your country in any way? (BOO, Hollywood)! The scenery was breathtaking, among other things. I love Nicole!!!!!
My question: How familiar are you with the Renacidin flush for SPC’s? That’s being discussed for him, but Bill’s latest scan only showed some large stationery stones, as before. At least, no Hydronephrosis(SP?) appreciate any info’, Love and XXXX’s, Anne
Deb… does your Dad have internet access? If so I know a family who went through similar experiences.. meeting others who REALLY understand/empathise makes such a difference. Most important is to tell him to throw away the embarassment of the indignity of it all because that just chews you up ( childbirth is worse ! )I went through isolated hell for years and no longer care about it in that way.
If no internet access then the family I know found a magazine by Lofric helpful and contact with other prostate cancer survivors. I’ll be able to contact this family at the weekend and will get back on here with some info.
Grandchildren are a wonderful incentive to keep battling on… if you don’t do so already.. send photos/drawings/anecdotes etc keep him alive through you and yours until he gathers his own strength again.
Thoughts as always are with you guys xx Lorna xx
Hi all. Its been a while since I’ve been here. Just thought I’d let you know that I got a letter on Monday and am due to be admitted to have my SPC fitted on March 19th.
Dear Deb: First of all, hang in.. there always exists an answer somewhere! You came to the right place in consulting with this site, as it is the best I’ve seen.. and I am an RN, former Visiting Nurse who is total caregiver of a great guy with MS, a neurogenic bladder.. leading to a SPC placement.. which I’ve had mega sediment problems with, but have been helped by this site more than by anything. I don’t know if/when you’ve written to this site previously, as I don’t keep up with it all of the time.. but first, I’ll ask you to read all of Graham’s suggestions at the beginning, and refer back to the older comments if you have time. They are most helpful. Lately, my patient and I have been doing somewhat better, no thanks to the Boston, MA, US of A Urologists.. not to single out anyone.
This is what we’ve been doing, mostly following just about all of Graham’s suggestions, particularly r/t fluid intake and Mandelamine (Methenamine) MD (generic name) 1 gm 4x/day, (or Urex). My North-of-Boston Urologist states that the dose is 1 gm.,/1x/day, but that didn’t work for the MEGA sediment problems we were having. To complicate things further, it is no longer available here, due to a factory dispute(?)…so you must get it as we do, in Canada. The dose on the bottle, and al state to take 1 gm. 4/X a day, and that seems to be the correct dose. Please check further yourself to verify; as I am not an MD, but have already checked it out ad nauseum. I don’t understand the problem with MA Uros, but I’ve had my FILL with them. My friends/colleagues are searching out a new one for us. I’ll let you know.
I also have to irrigate with NA Cl frequently, but he’s doing much better since we decided to go for the whole recommended Canadian Mandelamine MD dose. It is an antibacterial, not an antibiotic, hence it can be used longer. Info available on line! Fluids per Graham are also ESSENTIAL!! Hope this has helped! Bless! Anne (More info available)!
Hi Guys, Just been reading through all your text, have been a paraplegic for 34 yrs and managed my bladder (automatically) until about 4yrs ago. After having arm surgery had to have an indwelling cath, now after five years thats pretty useless leaking most of the time. So today Im off to the PA to find out about the Super Pubic Catheter. Don’t mind telling you I’m terrified. I have full feeling where it will go and I guess I just don’t want to have to deal with the whole thing. wish we could empty it once a year wouldn’t that be great. :-). Thanks for your info on this page, Having this hospital appointment in relation to my disability (fist in 20yrs) has actually put me on a real downer Eileen.
Hi Eileen.. just wanted to let you know I’m thinking of you xx I’m fed up of hospitals, stoma and pain once a year.. we should be so lucky! made me smile! Also.. thinking of all you guys having ops this week and recently.. hoping all goes well xx
Hi all. I’ve had my op and am now back home. Its not quite going as I would hope. I was planning to use the SPC with just the valve and no leg bag. I tried and it failed with spectacular results. My bladder doesn’t seem to want to hold anything, where as before the op my bladder function was quite normal. I had the op for independance sake as opposed to reasons of bladder issues (if that makes sense!) So, I’ve relented and am using a free draining leg back until I can get to see my nurse later this week. Since my op I have had really bad back pain. The pain is at kidney level which is my concern. Also, my bowel function has not returned yet. Did anyone else have this problem?
Dear Graham: We’re missing you! All the input is good, but yours adds a great deal more! How are you doing????
Hi all, It has been some time since ive been on the site so thought I would just update on my experiences. After having the SPC fitted last August and having many problems with spasms,my consultant suggested botox treatment. I last reported that I was going into hospital at the end of January for botox on my bladder, to hopefully stop spasms. I had very positive results and after having it done was pain free for the 1st time since August, unfortunately it didnt last long and after only 2 weeks started with slight spasms that have got worse and worse again. I am now waiting to have my next botox treatment on April 30th when hopefully they will put a larger amount in so that I will be painfree for longer. I know most people have very positive results from having the SPC fitted but I still am yet to be convinced.
GREAT site. I had a Supra-pubic in January. Best move for me. No more irritation. Flow is good. I’m flushing by drinking a lot of water. This site has been so helpful. Keep up the good work. This has been the only reliable site that I could completely understand with real “user” opinions. THANKS
Hi Graham,
Can Mandelimine be taken on-going at 1gm 4x daily or only if needed?
Hi Everyone, I’m back well tanned and fighting fit after a very enjoyable break. Thanks to all who offered answers while I was away, keep up the great work guys.
Kate: Ask your Dr about Ditropan, Vesicare or another of the bladder anti-spasmodic drugs. I had trouble fitting new supra pubic catheters as my bladder had shrunk to golf ball size. Ditropan relaxes the bladder smooth muscle reducding spasm allowing the bladder to hold more. The average bladder holds 250-300 ml. If your regular bowel motion doesn’t return to normal 4-6 weeks post-op consult your Dr as soon as possible.
Robert: Yes both, many take Mandelamine at that dose daily for life as a sediment and infection preventitive. As Anne states, it is an antibacterial not antibiotic. You should consult your Dr before making any changes in your medications.
Hi Graham & all….I haven’t written anything for a while now as I have been having terrible problems since my SPC was fitted 3rd Jan this year.
As I told you, my op didn’t go to plan & I came out of hospital with both an SPC & urethral catheter fitted. I was also put on oxybutynin & cyclizine which made me ill & I stopped the cyclizine after reading Graham’s response to why I was prescribed it. I went to see a new Urologist who specializes in further surgical procedures who wants me to have an ‘Ileal Conduit’ as a ‘bladder neck closure’ in his opinion wouldn’t work! He also informed me that there is a risk to life due to DVT’s & pneumonia occurring post surgery which is slightly higher for me due to being immobile & that I would have to have my blood thinned before & after. I was supposed to have been contacted by a stoma nurse who would explain what equipment is involved which I am still waiting to hear from. He told me that I could stop taking the oxybutynin which obviously wasn’t working, but I restarted them due to the level of pain without them.
When my district nurse came to change my urethral catheter, she couldn’t get another one in & then another DN came & inflated two catheters down below as she wasn’t sure which one was in the proper place & left me for half an hour in that state…(One SPC & 2 Urethral catheters at same time.) If my carer wasn’t here & saw it for herself, I don’t think anyone would have believed me. Half hour later, she returned with the head District Nurse who removed both as neither were in correctly & I was so sore, I refused to let them try again for a week for me to recover. The following friday a try was made again without success saying that there is something blocking the insertion. I go to the hospital this Monday the 6th for my first SPC change & I am dreading it. I feel like telling them to take it out as it has been more trouble than I had before. I have a constant feeling to bare down constantly & although I have no pain around the wound, only when the tube is touched, the pain inside is unbearable & it is affecting my bowel movements which is mainly constipation or watery diarrhoea since my op. I am also bleeding from the bowel at times & don’t know how much more I can take. I don’t even want to get out of my bed daily & feel so tired all the time.
Sorry to be on a downer, but wonder if you know anything about an Ileal Conduit?
Kate: I had back problems as you described at kidney level after SPC fitted & I was told that it was the way they have you on the operation table during the surgery. It did go away for me after a little while.
Hi Suzan, sorry to hear things are still not going well for you. Is the supra pubic catheter a silicone foley and can you rotate it freely several times? I sounds like it may be stuck. You can Google the facts, so I’ll speak specifics of Ileal to you. An Ileal Conduit or Ileal Loop is usually only performed on people who lose their bladder. There is relatively nothing wrong with yours is there? Would they still take it out? And if so, as in most cases the Ileal Conduit proceedure is not reversible. I would stay on Oxybutynin, if you leave one on your tounge you’ll find it numbs, it has a numbing effect on your bladder too, reducing pain. Is your specialist aware you’re bleeding from the bowel? With an Ileal Conduit part of the bowel is used. I’m certainly no Urologist but it seems radical, like curing a sore thumb by cutting it off. I suggest you exhaust any and all other avenues, medications etc. so if you do then go for an Ileal Conduit you hopefully won’t have regret.
Thanks for the quick response Graham…I have just tried to turn the catheter but I can’t as I said in my previous post, it is very painful if the tube is touched. My tube is clear colour with a red line going through it size 16 with a 15ml ball I think. My urethral catheters are a tan colour.
I have the SPC changed tomorrow with a SPC specialist at the hospital & will mention the bleeding & bowel problems along with the amount of pain I have but I don’t see the uroligist until the Thursday this week. I didn’t mention to you that I also lose blood through the SPC regularly too. Hopefully tomorrow, I will feel much better! Thanks again. x
Hi Suzan, the body constantly tries to expel the catheter and heal, seal the wound, not only at the catheter site but where it enters the bladder. Bladders heal quickly as urine in your blood stream is not good. A catheter can become stuck in this process. You can imagine when laying down the bladder is about two inches from skin surface, when sitting up or moving this distance will vary. If a catheter becomes sealed, stuck at either or worse both site and bladder it’s going to pull and hurt. It usually results in bladder trauma and blood appears in the urine. Your symptoms present this.
If so, you should notice an improvement in the days following the catheter change. In the article I mention friends who rotate their cath frequently as a preventitive. I don’t and after three months it’s often stuck requiring a firm pull to break the seal. Ask for long term silicone foley catheters that offer high resistance to sticking (usually green). I’ve heard silver coated catheters are also good for non-stick, and try frequent turning.
WELCOME BACK GRAHAM!!!! You sound like you had a great vacation! Good for you. I will make this briefer than my ill-fated last message.
Bill’s Urologist recently decided the Oxybutynin, due to an extremely dry (froggie voice) type mouth that he stated all the anti-cholinergics would do. However, back comes the spasms, so he told me I could use my discretion on how much to give him when he has a problem. Not a great, or even good solution. So I asked Bill’s Neurologist, who stated that he didn’t see the benefit in that med. (Oxybutynin.) anyway for continued spasms and suggested we bring him into Boston for Botox Rxs,(differing degrees of success reported, mostly temporary relief). Boston is a difficult trip for Bill, unless absolutely necessary, which I haven’t been convinced of (its benefit) yet.. enough to warrant all that. I would really like YOUR take. I realize you’re not an MD.. I just want your opinion. Thank you ever so much!
Hi Terrie, I’m a wheelchair user and found when I 1st had the Supra Pubic Catheter fitted I had considerable pain from the site once there was urine in my leg bag because the weight pulled down on my site. My carers suggested wearing a G strape around my thigh, which takes all the weight from the leg bag, and then my leg bag fits around the side of my shin into a Uriplan leg sleeve. Leaving the tap on the inner side of my leg down by my ankle, which is then very accessable for emptying.
I find that although it goes from top to bottom of my leg it is all held firmly and is quite comfortable and because it is all held in place i feel safer when im out and about that its not going to come undone in any way. Also you mention the unknown of the 1st catheter change, I have now had 3 changes done: the 1st of which was awful and took 3 district nurses to remove, it was so bad because each time they tried to pull it out the spasms i was having kept a hold of it inside and the pain was terrible. So after that experience I was very very nervous about having to have it changed again but the 2 further changes have been perfect, I cant really say I even had any discomfort never mind pain and it came out so easily, and quickly. So you should have no problem at all !! I hope my experiences help answer a few questions for you. Take care Terrie !!
Hi Terrie.. You should not have your bag so high, it should be lower than your sitting position. I had the same problem & Graham kindly helped me by posting some photos on the forum of how his is placed. I got my wheelchair department technician to visit & showed her Graham’s photo’s & she picked up her son’s Nike bag which his trainers had come in & used it to put it on the front of my wheelchair with those plastic tie straps & my carer’s put my two 2 litre bags in which solved a big problem for me, in that I can keep my dignity when I am out. Graham will be able to inform you better than me. I don’t use the G straps as I just use some micro tape to hold it in place & it works well for me. You could also try uriplan leg sleeve holders which you fit the bag into.
Graham I went to the hospital on Monday for my first Super Pubic Catheter change which should have been done by a specialist SPC nurse, but when I told her the problems I was having, she got my Consultant who did my op to come & see me & he suggested that he would put a flexi black cable with a camera on the end (can’t remember the name, but it starts with C!)They clamped off the SPC while they filled my bladder with water & he was able to see why the the urethral would not go beyond a certain point. He did manage to put an indwelling in & then he tackled the SPC change which I wasn’t expecting it at the moment he did it & I screamed as the pain was unbearable & went right through my body from my head to toes & they had to give me some oxygen to calm me down & stop my body shaking. They didn’t use any numbing gel or anything which I thought they would. My good leg shot up & nearly kicked him in the face lol.
There was 4 urologists (men) & one female who was at the side of me, but I felt very exposed as the men were at the other end. I told my original consultant about what they wanted to do & that I hadn’t seen the Consultant who I should have seen & he said that he would make sure that when I attended my appointment on the 9th he would also arrange to be there! Next day his secretary phoned to say that Mr Khan would not be there so they had cancelled my appointment for tomorrow & to wait for a new appointment.
One of the urologists in theatre made a suggestion to my Consultant about trying the sling method which is less invasive then the conduit but I have no idea what or how it is done. When I type in google ‘sling’ the results are not what I am looking for!
The good news is that after I had got over the shock of the SPC change, I woke up the next day feeling much better than I had in a long time & less pain, so I think it must have been the tube as I couldn’t touch it without it hurting, whereas now the new tube does not hurt when it is touched to clean around it. It’s a pretty blue coloured one, but I don’t know what make it is & my urethral is one I took with me which is a Foley.
In a post above you mention the silver coated catheters which I don’t know whether you’re aware, they can only stay in a max of 28 days & not for long term use. I have some here. I have taken myself off all the medication except the Oxybutynin & Tramadol which I will only use if pain is severe. If anyone knows about a sling would you be kind enough to post the information here please? Take care all & have a very happy Easter this coming weekend. x
Thanks Anne: I found this quote on the drug you mentioned, so with my ph of 8.3 will Mandelamine help? Before you start taking this medicine, check your urine with phenaphthazine paper or another test to see if it is acid. Your urine must be acidic (pH 5.5 or below) for this medicine to work properly.
Hi I’m 82 year old and have had a catheter in for a few months. I am booked in to have a super pubic catheter fitted soon, but I don’t know if I am doing the right thing. The catheter that I have now has been rubbing on my penis and making it sore.
The reason that I have a catheter is because of urine retention and I don’t want to go through an operation to have a massive prostate gland removed. I do not have cancer thank God. I am very scared of all operations and don’t look forward to having the super pubic tube done.
Note to Carol: What is an AHF setting, and what is an RND? I am an RN who has experience in changing, as well as flushing the SPC.
IMPORTANT FYI to other recent inquirys about functioning and care of a Supra Pubic Catheter, please see Graham’s notes above the comments, as well as read the comment archives. Your answers will probably be there! Sincerely, Anne
Hi Anne, Just read your post concerning the ongoing problems Bill is having with spasms. I have had very similar problems since having the SPC fitted, the spasms are unbearable and some days i cant even sit up in my wheelchair due to the level of pain, I to have been put on Oxybutinin which only helps a little but like you said the side effects of a dry mouth are awful and get on my nerves. You mention botox treatment being an option, I was given 300ml of botox into my bladder in January and although it left me painfree almost immediately after having the treatment it only lasted a matter of a couple of weeks before all the spasms were back to normal. I am now going back in on April 30th for my 2nd treatment and the urologist has told me they will put in a larger amount this time which should help for a longer period. He has advised that I will need it doing every 3mths thereafter. I am holding out on this time it being more of a success but since having the SPC last August I have been in so much pain that if it doesnt give me the relief i need this time, i am considering having the SPC removed. Hope this helps you a little Anne, as at least i have experience of having the botox treatment. I hope Bill gets the relief hes after very soon.
Good to have you back Graham, and thanks again for a great site !!
Hi there, thanks for the information and reading everyones comments been a help to me. I was looking for information before I had SPC and botox but only searched UK sites and didn’t feel there was the kind of info I wanted.
I had my supra pubic catheter done last Tuesday, it still sore and very weepy around site, but it not infected which is a huge relief. I got a confession, I terrified when it comes to having my first cath change done, sure once it done I wonder why so scared about it but I am. silly really as gone through much worse things.
As a wheelchair user I have the bag high on thigh but use G straps which I dont get on with, anyone know other methods of holding in place? Thanks Terrie
Hi Anne, I’m still working on a full site overhaul which will include a whole new comment script. Meanwhile make a copy of your post before submission and repost if it doesn’t show. I did have a great time with my girlfriend thanks Anne and Kerry, she is so beautiful and totally awesome, the center of my universe.
For Bill I think it would be worth the trip to try botox at least once, then you can weigh up if it’s worth the trip. Kerry makes a good point about the volume of botox used, you will want to take that into consideration too. Until such time I would prefer a dry mouth over spasming and the worse possibility of a bladder the size of a grape. Chewing gum or lollies (candy) can aleviate a dry mouth. I take 5mg Oxybutynin twice daily, my skin can become really dry.
Terrie: It’s not silly to be afraid of the unknown, but I can assure you changing the catheter is quite a simple procedure. Now, you could attach some kind of backpack or something like a small pillow case to your wheelchair and place your leg bag inside it. You’ll find pictures of what I’m talking about in our Forum. There are many different tpes of drainage bags and collection devices you can experiment with.
Suzan: I’m glad to hear the catheter change has lowered pain levels. Try turning it frequently to keep it free. Four male urologists gawd, shame your good leg didn’t connect with at least one of them lol, how invasive & inconsiderate. 28 days is interesting, not cost effective at approx $179/12. I currently use blue Foley’s with an orange banded port, 5cc balloon, good for 3 mths approx $120/12. I posted Pubovaginal Sling Procedure information in the forum for you.
Terrie, first of all I want to comment on your fear of the Supra Pubic Catheter change. I presently have an opinion, similar to Graham’s, that it doesn’t have to be a huge “thing”. Fear of the unknown is part of it, I’m sure…but a little, quick “tug” is all my “Super Trouper” (ABBA fan forever!) Bill now experiences, and only for a few seconds. It is simply not a big problem anymore; a point which I hope you can get to, as I’m sure you can. ENOUGH… when you have all the other stuff to deal with!!!
R/T spasms, now that’s another story. The local Urologist is now suggesting we try the med.”Vesicare” for Bill’s urinary spasms. Anyone had experience with it? Graham, I am willing to try the Botox Rx. at a later time, but presently his Neurologist wants him to try a Baclofen pump for his general spasticity…so I guess we will work with the “Vesicare” med. for the urinary sx., for now. WHAT a disease MS is!!! Not that any of you, (sans MS) are suffering less, but Bill’s symptoms are never-ending in their constant, unpredictable changes, a challenge to anyone’s intellect and background! I guess that’s the “Name of the Game”. (another ABBA plug)!
XXXX’s to all of you in your effort to make things better, which I know we can do together with this site!
Anne: Seems like everything comes full circle huh? Oxybutynin (Ditropan), Tolterodine (Detrol LA), Solifenacin (Vesicare), and Darifenacin (Enablex) are all much the same drug for treating an overactive bladder, all have the same side effects. Sure it won’t hurt to switch but most likely it won’t make any difference. The advantage of these over Baclofen is they target the bladder smooth muscle specifically, though I understand the need for Bill to take Baclofen for his general spasm. I know a woman who had a Baclofen pump installed, it had to be removed a month later due to a terrible infection. I’ve a mate who takes 4x25mg oraly daily to great effect.
Hi all, I recently had a Supra Pubic Catheter proceedure after wearing a condom catheter for almost 30 years. I’m a 50 yr. old C2 quad with disjointed feeling and not much movement. Since I’ve had the spc I’ve had several different problems, it’s been almost 4 months now, it’s still uncomfortable and I am leaking once or twice a week, probably 100 to 200cc per episode. Is my body adjusting, or should I expect this? I’m going through many other changes, can age and quadriplegia be a factor? When I’m up in my chair I don’t urinate very much, and it’s usually very rust colored, is that common? Thanks Randy from CA…
I’m a 30yr. old c1-c2 with a SPC(5yr). I have to change my SPC every 10 days due to sediment. I tested my ph level and it was 8.3. My bladder constantly has a burning sensation, which causes spasms. I drink plenty of water throughout the day plus irrigate my SPC once a day. I do take Ditropan everyday. Any suggestions would be appreciated.
Hi Jeff: Believe I can help you with this one. I initally suggest for you to do all of Grahams reading re: this topic. It can be found previously on this site…even go into the archives for more comments. Many are relevant an helpful!
For now, I can tell you that your pH is rather high (alkaline), an environment the urine “beasties” find more/most favorable to grow in than acidic, which is under 7…(7 being neutral). Mandelamine/Urex/Methenamine MD,etc., 1 Gm. 4X/day per originally suggested has helped immensely. Also, watch your diet, and avoid alkaline foods…this dietary list can also be found on line. I’ve found that Cran.Jce., mixed with h2o and sweetening rally helps my MS Pt. He gets diarrhea with too much (any) juice. Water galore is always helpful.
I am an RN caregiver of my MS pt. (Bill) who’s SPC also attracts mega sediment. I also HAVE to irrigate. Graham has been my savior in helping with these problems…more than the Urologist who sometimes brushes it off by stating, “Bill’s SPC problems are like nothing I’ve seen much. He has a very difficult to manage, and contracted bladder!” NO S—-T SHERLOCK! Has he given me helpful solutions, heck no…but his nurse and GRAHAM have. You should try them. Foley changes that frequent are not good, and are costly! Also, you might investigate the special Cath. types that cut down on sediment; silicone, teflon, for starters. It’s what your insurance wll cover in this country, anyways. I have spent mega hours on your problem, and hope my knowledge I’ve gained will be helpful to you. Sincerely, Anne
Hi Jeff: It is confusing, and I will attempt to clarify it as best I can, but you really need an MD overseeing this. Normal pH levels differ…I simply gave you the in-between one, on a trusted site I use. Also stated was that pH can vary at different times of the day, tending to be more acidic after sleeping/fasting, than later in day when and after your body digests food. This site also places YOUR pH (?time of day you took it) close to the unheathy level of above 8.5, which I am wondering about. Have it checked again, following instructions to a “T”. Bill’s pH lately has not been quite as low as 5.5, but the Mandelamine (known under many different names, with possibly many different ramifications and differences) works on him. Mandelmine, etc. is an older antibacterial, sometimes called a urinary antiseptic…NOT an antibiotic, but some MD’s don’t like to use it anymore. Your MD must determine your answer…but I, personally would find out why my pH was 8.3…could indicate infection or other process.
Too much info’ for purposes of this post, but I remember Graham discussing it a while back, so check all former info’ and posts, including archives…like I stated. On this site, as far as I
know none of us are MD’s, so it should be used as a guideline only.
I guess that what I’m saying is that this med., like most others can differ in it’s use and affectiveness, but it’s worth your checking it out w/your MD, because if he/you can get your pH down, it can really help with the sediment, (bordering on infection, r/t foreign object body wants to expell, as explained previously by Graham and others). Hope I’ve helped, and not confused you further. There is a lot to this stuff tat can’t be explained away in a short post! Good luck, I understand your frustration! Keep me posted. Anne
Randy: It’s highly likely you have a bad UTI (Urinary Tract Infection). Age and quadriplegia don’t typically have great impact on supra pubic catheter users, no more than the expected incontinence etc with ageing. Your spc should be well settled by 4 months. If you’re a heavy guy the leaking and uncomfortable are common. Have your Dr take a urine sample, test for infection and see if that eases your symptoms.
Jeff: Part of the active constituent in Mandelamine requires a pH lower than 5 to effectively convert to formaldehyde in urine. This formaldehyde acts to kill off common bacteria preventing infection and lowering sediment levels. You can take Mandelamine with Ditropan, it’s also known as Hiprex and Urex, can be taken twice daily, if once only take it nightly. As Anne says an 8.5 pH is out of the healthy range, so is less than 6 but you need to find what works best for you. Irrigating a supra pubic catheter daily is a pain and opens avenue to infection. I would also cease them if you find Hiprex of benefit and keep drinking the 3+litres of fluids daily.
Hi, I am a carer have several clients with supra pubic catheters and wanted to find out more so used your website, which has answered alot of my questions. Thank you.
hey all, i am new here . I have had a super pubic for about four months now, no luck. many uti’s. doc say’s bacteria interduce throu s.p. I keep it clean shower in morning, use hydrogen peroxide in morn and at night i drink alot of water and cranberry juice, vit. C. have a good diet. do any one have infromation on swimmimg, or surfing in the ocean with a super pub???? help. Danny
Danny: Vitamin C increases sediment levels in most people and sediment promotes bacteria/infections. Ask your Dr about trying Hiprex or Urex. As stated in the article and comments swimming is no problem. Avoid drinking an hour prior, empty your bladder and bung a spiggot or tap into the catheter. Saltwater is actually good for your super pubic catheter site.
I feel so confused, frustrated, & alone!. I’m a 41-year old male with Cerebral Palsy who currently uses a foley, but it was just suggested to me by a urologist to have a Super Pubic Catheter due to me being young & needing a catheter for long term. Knowing absolutely nothing about nor ever hearing about the SPC according to the urologist it sounded like such an ideal solution & a simple procedure. I can’t tell how thrilled & relieved I felt I have it set up to be performed next month. When I returned home which is in a long-term nursing facility & told my primary 7-3 care nurse her response was, “Oh, they can be messy & you have to change the gauze or dressing every day.” She didn’t seem to be in too much in favor of the SPC, yet the RN (at the nursing facility) thought that it was better for me. The urologist never mentioned this & you need to understand where I’m coming from. The nurses or caretakers in where I reside are for the most part some are good & caring, some are, average to fair, & some are just plainly sloppy, lazy, & uncaring. And I have no control over who I get from day to day. My thing has always been to try to limit the least amount of care/ help I need because so many of these caretakers are so hot & cold (unpredictable) & are just in one big rush to get done & sit down.. Then I go on the Internet & do some research, came upon this site & read many of the positive & negative experiences. Everyone has a different story & you wonder how your procedure will go & the long term affects — will I suffer with endless pain & headaches? I have so many concerns & unanswered questions, I can’t called the urologist myself & as I said I hate asking for help; these people here are just funny. It’s like you have to try & read their faces & try to figure out what mood they’re in.
My first question is, I sit very straight up (almost at a 90 degrees) in my power chair; I have to in order to be able to drive. Is this going to be a problem with the SPC & how I’m sitting? Will it clog or kink up on me? How much pain should I expect to in cure & for how long? What if I can’t or don’t have access to drinking 3-liters of water a day…then what? The nurses do fill up my water bottle which sits on my desk & it’s probably is only a liter. Once caretakers get you up & ready I sense that they really don’t want to be bothered. I stress over EVERYTHING! Believe me, I’m totally stressed out over this & don’t know where to turn. Maybe I ought to just stick with the foley for now, I don’t know? This whole urinary bladder issue has been a real stressor for me & I just thought that the SPC was the magic answer. I know that I may sound like a child, but I’m just so afraid in not knowing where to turn. -Dave
Don’t worry, Dave! This site will help you if you’re willing to read all of Graham’s suggestions located previous to posts on this site. Also, read the posts pertaining to your problem! You can learn from our mistakes. My friend’s SPC is finally working great, but unfortuately his Urologist had other ideas that we just wasted time on. I am his RN caregiver, and although you must still go by your MD, you can perhaps, like I did…”talk” him into at least trying the suggestions here. Most of them ultimately “worked like a charm”, and it is SUCH an improvement over an indwelling. Your “Nurse” was wrong in giving you HER limited opinion on SPT wound care. Although the site is irritated @ X’s, after it “heals over” (refer to Graham’s notes) it is little to NO problem. I just keep Bill’s clean w/a saline wipe and a dab of Antibiotic ointment, and a DSD if and when needed. It’s never been infected,& Graham has had a good outcome with his. Hope I have helped…but you can be helped more by reding everything related on this site! Good luck! Anne
Dave: Since I left out answers to some of your ?’s I’ll try to do it now. Bill sits up ALL day, we just position his SPC device so it is draining via gravity. Once in awhile he realizes it is kinked so due to discomfort we reposition it. I also “twist” it daily to make catheter changes even easier than the minor problem they are. (Again, addressed previously in posts &/or notes).
“Squeaky valves get the most oil”!!!!!SPEAK UP about getting enough fluids to prevent a UTI!!! You must also have some w/your meals, which might add up. 240cc=1 cup, or 8 ounces. 1000 cc’s, or milliliters= about a quart, or 32(ish) ounces or a Liter. (cc’s and ml’s are, for our purposes interchangeable).
Institutional care is tough, as they are always cutting on help and you never know who or “what” your caregver will be day to day. I wish you could go home w/services, or get into an assisted living situation w/services. Relax, you’re going to do fine! If you have to stay in that facility be assertive (not demanding). Kill them w/kindness and you’ll also get dividends! Regards, Anne
Graham, is it ok to use an ointment on a sore spc site ?
Hi Anne & all. Thankyou Anne for your generous response, kindness & encouragement. I wish I could say I no longer have any concerns & questions, but I do. My stress level for now has slightly gone down, but I’m not getting it done until June. For those of you on this site who had bad experiences I’m so sorry & I don’t doubt any of your hardships, it makes me anxious & concerned. I’m trying to collect data pertaining to the Super Pubic Catheter, to see what I’m getting myself into (the pros & cons) & just to have an idea on what to expect afterwards. In addition to, maybe making some new friends along the way. Anne, you being a RN, I wouldn’t mind developing a friendship with you because you can be a real asset! My RN here at the nursing facility talked to me once last week & told me that many residence at the facility have SPC’S, but I’m not completely convinced. I want to know how knowledgeable MY LPN’S are in changing the SPC, how often, & etc.
Some questions that maybe Graham & you might be able to address are: 1) For my own security & comfort (& I know that I’m repeating my same question) I sit straight up tall & erect (for a lack of a better word) :) in my power chair all day long. I can’t lean back even slightly because then I wouldn’t be able to drive my power chair nor type on my computer via using a head-pointer. My worry with sitting as such — will it affect my SPC internally drainage-wise? Does anyone understand my question? 2) When people talk about their SPC getting “Kinked” what exactly does that mean? Are they talking about internally or the external tubing? 3) Granted, everyone’s body is different, but on average how long will the healing process take & will I feel a lot of discomfort & pain? 4) Now I’m talking Flowmax & Avodart, will I need to take another med? 5) How often on average does one change his/her SPC? Is once a month reasonable & again is changing the SPC discomforting & painful? As you can tell I DO NOT like pain! But who does, right. Besides my Cerebral Palsy I also suffer with another illness, depression, so. thanks for listening & your help to all.
I’d like Graham to address this past one of Dave’s.
Geoff, you needn’t worry…many Rx’s work out well on SPC sites depending on the skin. FYO: Bill’s Urologist agrees with using A&D/or Bacitracin with any increased irritation/inflammation, after cleansing the area. That, my friend works for Bill. Anne
Geoff: Yes you can. Things like topical antibiotics and aloe vera are no problem when needed but I don’t recommend prolonged continual use.
Dave: I can answer all your questions with one word, reversible. No one can tell if it will remain painful for you or just what you will experience. To stress and worry about it helps no one least of all you. Go for it, if it doesn’t work out take it out and resume your old method, the Supra Pubic Catheter site will heal over. To set your mind at ease: 1) No, sitting bolt upright or laying face down, fat skinny tall or short it will drain fine. 2) External tubing like a drainage bag. 3) 4-6 weeks. 4) Flowmax and Avodart are for an enlaged prostate, nothing to do with SPC. Most with an SPC find Vesicare (or similar) and Hiprex of benefit, consult your Doctor. 5) Frequency of changing depends on catheter life, some catheters are good for 1 month others 3 and should be changed accordingly void of complications. When done carefully and correctly it’s relatively painless. 6) Relax, it’s always reversible
Hi my name is Dennis i,m a c6 quad, I have had a spc for 2 months now and i,m wonder when it will stop bleding sometimes and having puss most of the time. Don,t get me wrong it is better than having it in the end of my thing and it dose not hurt so some puss and blood I can keep it clean. Thanks to you all for helping me out.
My dad recently had to have a SPC after many years of trouble urinating and a failed urethral reconstructive surgery. He doesn’t have a follow up appt. with the doctor for another month….any ideas of how to clean the tubing to get all of the sticky tape and lint off! Your help would be greatly appreciated!!
Dennis: At 2mo how it is now is probably how it will stay. Keep it as dry and sterile as you can, limit physical activity and avoid pulling on the catheter for the best chance at healing. Exposure to sunlight daily can also help the process. It could also be worth your Doctor taking a swab to test for a site infection.
Erin: You could try an alcohol wipe. Something stronger I know will work is nail polish remover but do not get it on his skin/site! Ouch
Graham, another question. My spc site gets very sore as the day goes on. The site shows no sign of infection, just a little itching that I have had before the soreness. I did have an inguinal hernia op recently and the soreness seems to have started about that time. I am pretty sure i do not have a uti. Overnight is is ok, just starts after I get up and gets progressively worse as the day goes on. I notice that the edge of the hernia incision is close to the site. Is it possible that the nerves have been upset by the hernia op? (They say if you want to know something, ask an expert)
Geoff: Hard to say what’s causing it, you could test your theory by taking ibprofen (Neurofen) which targets nerve pain. If you get relief you’re probably right, unfortunatly there would be no fix.
I found your site just googling around trying to see what my spc will look like. I have the procedure scheduled for this Friday. I am hoping I will sleep at night. I use timed voiding during the day, I am bed bound but can pivot to a bedside commode. In my wheelchair I can’t transfer myself, I have an adaptive chair that is cumbersome in a bathroom. I am looking forward to going out of the house again. Thank you for the real life advice and feedback. I learned more about my procedure from reading the posts than from all my pre-op visits.
I had the SPC since March 20, 2009. Recently noticed little blood near the openning. Should I be concerned?
Thanks Laurie. Robert: No a little bleeding now and then is common. It should stop quickly, If it’s a continual on going bleed you should try to find the cause, usually trauma like pulling on the catheter.
Hi just been reading all comments on SPC at the moment feel frighten. Could be having one shortly as i had a failed matroffanof (not sure on spelling). That was the most frightening thing i have ever had. Unfortunately the used my appendix and once the catheter was out my appendix collapsed and i was unable to use it. Now it has left me in a worse condition than before and the pain is unbareable at times. The UTI’S and pain in the kidneys leave me quite disablerling. My head all over the place would most of you say SPC way forward. Thanks
Anyone with a SP using a flipflow valve ? Do you have any problems when you switch it to free drainage?
At the moment i’m having to constantly keep the valve off then when my bladder fills release it until its nearly empty then quickly clip off again. If I leave it to fully drain the spasams will kick in hard. I suppose its as if when draining my bladder is contracting and the cathater is touching the wall causing problems.
Previous to this I had a regular catheter with a flip flow valve and had none of these issues.
Thank you Graham. My name is Denise and I am from Australia. I found your site by pure luck, but it is exactly what I was looking for. I have a Super Pubic Catheter due to Multiple Sclerosis and it has been bypassing almost constantly for the past 2 months. The nurses keep changing the catheter,but it makes no difference. They got in touch with my Urologist and he was going to resite it, then they discovered I had a Staph Infection, so it had to be postponed. When he was ready to do the operation I got pneumonia,so I’m still left with a bypassing SPC which is really burning my skin, as I can only lie on my back – I can only sit out of bed long enough to have a shower.
I had my SPC inserted 5 years ago abd would you believe, the site has never stopped bleeding. Sometimes it can take uo to 30 minutes for the bleeding to stop and then I have to have a pressure dressing applied, incase it starts again. The site it self is so sore, I could cry.
I drink plenty of water and have cranberry juice every day but still end up with UTI’s. The spasms are also unbearable. I am sorry for rambling on, but do you have any suggestions, besides suicide, because that’s what I feel that’s my last option as nobody seems to be taking my problem seriously. Please HELP
Gillian: Given the complexity of your problem the best thing you can do is follow your urologists advice. An SPC should work for you and if not still be reversible.
Agent: It sounds as though that is exactly what’s happening. An antispasmodic drug like Ditropan, Enablex or Vesicare may reduce the spasming and allow room for the catheter when empty. Also be sure to keep your drainage bag below the supra pubic catheter site.
Denise: A resite could ease the problems but not cure. A quick relief and preventitive from urine burns is a coating of PLAIN vasaline, use something like a stable table to keep your covers off your tummy. Follow up with all the advice in our article for best results. For most the SPC site never truly heals, keep the site clean, use sterile catheter changing techniques, limiting trauma etc should prove beneficial long term. Ask your doctor about Ditropan and Hiprex, these should also help reduce site and bladder trauma from spasaming and urinary tract infection conversely. Urine burns are painful, hang in there Denise.
Thanks Graham. As a former ICU Nurse, I make sure a sterile technique is used every time the catheter is changed. How often should the catheter be changed?
hi, my son who is a quad just had a sp on july 2, we went on july 14 for a post op and the dr changed the tube and couldnt insert the new one and had to do anther cysto and my sond blood pressure went up to 198/117, i had to request the nurse check his blood pressure, which really ticked me off, but anyway she was really short on how to care for the site and i also told them about all the sediment that i had seen and i was told that he would have this. i almost lost him back in may as he had a indwelling and the home health nurse inserted it wrong and her was bleeding big time and ended up with uro sepsis and was in ICU for 2 weeks. any info on the sp would be very helpful and ease my mind. thanx
Denise: There are two basic types, laytex catheters usually brown or grey are designed to be changed monthly, the other silicone or hydro-gel coated catheters often opaque green or blue can be used for upto three months. See the guidelines on the packaging for a max recommeded usage time. The frequency of changing any catheter should otherwise be determined on an individual needs basis. A person who produces high sediment levels may find the catheter blocks every 3 weeks so regardless of laytex or silicone it will need to be changed every 2-3 weeks.
Debbie: Your son could benefit by following all of the advice in our article especially use of a bladder antispasmodic drug like Ditropan. I recently increased my dosage of same after finding bladder shrinkage made it difficult to correctly position a new catheter. I too had alot of bleeding.
Debbie: I am thankfully on the right “trail” now, after a long time of problems. I would read everything here, including the archives. I totally agree with Graham. As a full-time RN caregiver for a Pt. with awful urinary problems,1 I am very thankful for this site ( a one of a kinder)!!!!!!!!
Hello Graham, I am a paraplegic and have gone to an internal catheter due to so many times of the external coming off at the wrong times. However, no I have found I just don’t ever sleep well and think it is due to some stress caused by the catheter. Also my body below my injury level seems to stay in a constant sweat. I am thinking of having an SPC done and would like your thoughts on the matter. New to the site, Charles
Hi Charles: Sweating is pretty common for new IDC (In-Dwelling Catheter) usaers as they irritate the urinary tract, urethra and bladder. It may settle after 3-6 months. An SPC (Supra Pubic Catheter) probably wouldn’t make much difference as they also irritate the bladder. Consult your doctor or a urologist about medications to reduce the sensitivity you experience. Also use anaesthetic gels like Lignocaine when changing the catheter. Exhaust all the less invasive options before considering an SPC.
My son is 19 and recently had a suprapubic catheter (2 months ago). Sometimes it will drain and sometimes it will not. I can flush easily but can’t get anything on return. He recently had it replaced and this catheter is doing the same thing. The doctor did say something about it being on his bladder wall, but really didn’t give any advice how to get it back going again. Any ideas how I can reposition it?
Hi Lynn: I’ve never understood the “against the bladder wall” reasoning. A catheter has two eyelets, if one is against the wall the other is still free to drain. If the bladder has constricted pushing the cather tip down the urethra then sure both eyelets are covered. An ultrasound will help determine what’s going on. Then solutions may include medications to relax the constricted (overactive) bladder, a different type of catheter, use of an indwelling catheter until things settle.
An example of “against the bladder wall” would be when one eyelet is blocked, and the other is, in fact against the bladder wall,ie, interfering with flow.
Hello Graham: I’m researching the net for info on SPC, as my urologist recommend as alternative to foley chathater method. I have been a quad for 39 years (1970), and have managed with Texas Cathater until a five years ago. I started the IC method, however I could not get home health service for cathing because HHC comapanies would not allow nurse to come to my home 3 times per day. My wife became ill and could no long do my IC, so my urologist suggested foley which is changed normally every four weeks in his office. This has worked, but it is not a long-term solutio. Urologist suggested a SPC and explained surgical process, recovery time, and SPC foley method. He has had on a coupe re-do’s, as individuals had SPC pulled out of port by atendant or caught on clothing, or something.
I’m from the old school before high tech methods and medications, as most people “crapped-out” with a broken neck (C5/6) in 1970. (By the way, if someone is offended by my use of “Old Gimp”, I earned the name. It is my Badge of Honor.) In 39 years, I have been through all the highs
However, I thank you for your info, as I’m less concerned about the Supra Pubic Catheter method, as it is reversable. I have complete trust in my urologist and his ability to preform this surgery. Your sight has provided a lot of info about SPC care and mantainance. My knowledge of quadriplegia is extensive, but not about SPC. My background is Rehab Technologist with GA VR, and now a state retiree as of July 1st.
Any suggestions welcome as I need to make a decision and schedule this surgery, as my current method is not a long term solution. Thank You Graham.
I have an spc—I use a night drainage bag at bedtime–my question is—-Is there any type of leg bag that is available large enough to replace the bulky night bag?
I appologize for my lack of response to recent questions. I hope the people who frequent here will cover my ass. We are working on a more reliable commenting system and whole new look to our website. With over 6000 valued comments to preserve it is quite a task.
In Southwest Washington, are there any nurses(RND) out there that have delegated flushing a SPC in AFH setting?
I have had a SPC since June, after a tube pull I had several infections. Sipro worked, but now I feel pressure to void and have to transfer to my bedside commode. After very painful contractions I manage to go about a teaspoon. It relieves the pressure for about about 20-40 min. then the cycle repeats. I take detrol LA. Have my tube changed every 4 weeks. Lots of site discharge, dark mucus. My bag drains well, no fever. Doc is not very concerned. I am, the whole point of my SPC was to avoid risky transfers. Now I have to wait another 4 weeks to be told, things will probably resolve. I have been reading the posts since January when I decided to go with the SPC. I know someone has gone something like me, please share I am worried. Thanks
My husband has multiple sclerosis and wants a super pubic as well. The other one is causing him lots of uti’s. Does this one get this uti’s? Thanks, Juliann
Laurie: June and it’s strill weeping heavily doesn’t sound good. Ask your doctor to take a swab and test for a site infection, you may need antibiotics. I know it can be difficult but keeping the site clean sterile and dry will aid the healing process. Draining well and still getting the sensation to void indicates Detrol LA isn’t working for you. While at the doctors ask about increasing the dosage or switching to Ditropan, Vesicare or another similar alternative.
Juliann: Yes, anytime you have a foreign object inserted into your body there is a pathway for bacteria to get in. I assume your hubby has an IDC Indwelling Catheter. The incidence of urinary tract infections between IDC and the SPC Supra Pubic Catheter method are about the same.
Thanks Graham, I will have a site swab next visit and ask about a med change. I have found a few things that may help to keep my infections down. I go to to VA SCI clinic every 4 weeks for a tube change. In the past I was changing from my leg bag to my night bag daily. I go to school for one class a day and did not want part of my tube showing. I got a cloth stethoscope cover. It slides over the part of my tube that comes out of my night drainage bag and I use cloth tape to secure both ends. The tube that comes out of the bottom of my pants is now covered. I am not trying to hide the fact I have tubes, I just don\’t like my urine flow out there for all to see. I am mindful I do have an open pathway for bacteria. Now when I go out my privacy is intact and I am minimizing the number of times I open the pathway. My leg bag would also reach capacity and it had no back-flow chamber like my night bag. Accidental tube tugs during bag changes are down. I use a statlock at the y and a Bard wide leg bag strap above my knee to secure my tube. Let me know your ideas, thanks.
hiya all
just been reading all your words of encouragment , i go in hospital on 13th oct for super pubic catheter im bialateral amputte with spina bifida , from all i have spoken to everyone says its the best thing they ever had done , so hopefuly il be saying the same next week x
hi newbie ti site here,i am dissabled,spinal nerve compression,wheelchair user,i,m having an spc op on monday 19 th oct,as i am incontient with a retentive bladder,and feel releived to have found your site and this post to put me at ease,i also have type 2 diabetes and am on 216 units of insulin a day,spomach ulcer,high blood pressure etc,etc,so thanks for this great post,as i am getting feed up with none stop,water infections,yours truly papa12,uk
wow!!! im very shocked at all these comments and so many people that have spc. I have a four year old daughter soon to be five and she has a spc, due to bladder problems and spinabiffider. she still gets uti’s. the next step for her is a mitrofanof, witch she is not looking forward to.. she is very open about her spc at school, but doesnt understand why she has it! im asked questions from her eveyday about her condition and i can only be as honest as i can. she is an amazing child and is pleased with this web that i have found, as she now see that she is not the only one with it.
Hi Carly, most people only research these things when having problems or are considering a supra pubic catheter so we don’t see many “everythings fine” comments here. Just as we don’t drop by a mechanic to tell them my car is running great! I’m not a doctor nor Spina Bifida expert but if your daughter ~waves hello~ is of reasonable health and her spc works well, why go for a Mitrofanoff? I wouldn’t be looking forward to it either. A surgical procedure where the appendix is used to create a conduit between the bladder and skin surface creating a stoma usually at the belly button where a catheter is then inserted several times a day to drain the bladder. I don’t see a medical reason as passing catheters can cause uti’s. Is it more a lifestyle choice?
hi all had op yesterday,home by afternoon,a bit sore,feeling bruised today but am feeling good,just got my leg bag fitted up,yours truly papa12
Great Site!
I’m a colon cancer survivor that has a neurogenic bladder as a result of my surgeries. I’ve had a SPC for about four years and like most of the posts here, it’s a “love/hate” kind of deal! I like the convenience but I dislike the smells when I get a UTI and the occasional plugged pipe. It took me over a year to convince my Urologist that I was a big enough boy to change my own catheters. I changed Urologists and the new guy got me set up with a refillable standing prescription for Cypro so my UTIs can be treated when they are dicovered instead of having to go into the doctor and do a culture.
A word of warning.. If you are as active as I am, it’s possible for the catheter to pop out without you knowing it. The balloons on all the foleys I’ve used do deflate over time. I check mine weekly by deflating it into a syringe then reinflating it. Since I started doing this, changes have been easier as well because it dislodges the balloon from the bladder wall. Mine popped out sometime in the middle of the day at our lake cabin this summer. I discovered it when I went to take a shower. Panic ensued! We rushed to the local ER and found the folks there as ignorant about SPCs as I first was. I talked them out of a smaller, 16fr cath (I was wearing a 22) with a harder tip and reinserted the catheter myself while they stood by wringing their hands and waiting for my Urologist to call them. I just kept a firm steady pressure on it, pressing just hard enough that it didn’t hurt too badly. After about 60 seconds it slowly went in! I had just gotten dressed when the Urologist called in and, you guessed it, gave them the exact same instructions! Ahhhh common sense and an empty bladder! I’m fairly certain that it had been out about two hours before I put the new one in.
OK, so an SPC may not be a particularly perfect or elegant solution but I could never wear shorts anyway (ugly legs…). But it’s better that self cathing four to six times a day. There are times when I wonder if I should go back to a self cath set up but after weighing the convenience factor, I’m sticking with an SPC!
Thanks for all the great info here everyone!
Since I fell and broke my hip I’ve had bladder spasms that the doctor cannot control. I’m 88 years old. The hip healed just fine but they have not removed the cath, it’s been in since the operation 3 months ago. I am in horrible pain from the spasms. I want the cath out. It feels like I’m sitting on a thorn bush. My doctor wants to do a SPC which I’m okay with. Will it stop these spasms. If it won’t what will it be like with the SPC. When I have the spams, which are many everyday, I leak all over my bed. Please help me. Thank you. Evie
Hi Evie, the Supra Pubic Catheter method is a shorter path, that is less catheter in your body – less potential for irritation. Obviously you would no longer be sitting on the catheter so hopefully the thorn bush sensation will ease if not stop. I would think whether you do or don’t go SPC a drug like Ditropan, Enablex, Detrol LA or Vesicare will help reduce bladder spasm. Please ask your doctor as the risks involved with taking these medicines greatly increases with a persons age. Another possible spasm cause is urinary tract infection, again your doctor can test for that. My one small concern as you have full sensation would be the pain at the SPC site (catheter entry point usually just below belly button). As I said, considering your current pain and discomfort levels it’s of little concern really and there’s always numbing gels etc.
Graham, I’m a registered nurse clinical educator and I have been searching for legitimate medical journals to teach our RN’s about protocol and standards for changing suprapubic catheters, and would you believe the info is very hard to find. Your posting has been my best resource so far. Unfortunately, I have to refer to medical/nursing journals/literature in my teaching. You don’t know of any do you?
I appreciate the information you have provided. I’m sure it’s helping many people. Thank you, Tara
Hi Tara, I also found it hard to find so started making my own kit. Most are taught the technique of changing a supra pubic catheter by demonstration from someone who has done it before. I have written a 10 step procedure and plan to offer it for purchase through this web site. It will include a sealed sterile catheter change pack and an instructional DVD performing the steps, with follow up additional common questions and answers. Meanwhile I can only suggest you try a library, a spinal unit, and paraplegic, quadriplegic and spinal cord injury type of associations and support organisations.
hi just reading your comments, my father who is 87 had a pubic catheter fitted yesterday 3/11/09, he was addmitted into hospital last night as he was losing blood by the time he was admitted he had lost approx 2 n half litres i called the hospital this morning to ask of his condition they told me he was still losing blood, i just wondered was this normal
No Angela that is not normal and hospital is the best place to be. 2.5 L is a lot of blood to lose. At 87 I expect a transfusion would be be necessary. If it only started once home perhaps the catheter was accidently pulled on to hard.. no use speculating. I’m sure they will identify possibly with an ultrasound and help correct the problem asap.
I am interested in having a superpubic . I have a spinal cord injury for about 35 years. I was wondering if I did this procedure it could reduce my UTI ? thanks, Matt
Hi Matthew, reduce from what? What is your current method of bladder management? An Indwelling Catheter and Supra Pubic Catheter have about the same incidence rate of Urinary Tract Infection. Most UTI are caused by non-sterile proceedures. You’ll find this has been discussed a lot in the older comments here.
You’ve assisted my understanding on what is usually a hard to tackle subject. Thank you!
seriously considering spc. having read all the letters on this page am more convinced its the right way to go. the only thing that concerns me is, I’m immobile and worry as to how they would manage me to have the small op. your comments would be much appreciated.
I’ve had my SPC for 5 weeks now and I’m perfectly fie and active apart from a blocked ureathra. I use a flip flow without any problems and connect this to a night bag for convienience. In the 1st couple of weeks I had 2 kidney infections, now I drink lots of water and this helps keep them at bay aswell as stopping me feeling like I need to go to the loo when I don’t.
My only concern is the SPC site is painful and always weeps a sticky goo & bleeds ocasionally. I alternate between wearing a wound dressing and not. This is just to experiment really. I can’t seem to find a level of comfort and this is starting to wear me down, along with the smell when I am not wearing a dressing. I am active daily and my catheter moves in and out and rotates freely, however this seems to draw more gunk out.
Any advice will be greatly recieved TIA Dave.
Graham: I first want to say that this site is an absolute godsend! For 25 years I have been managing through condom drainage with relatively infrequent bladder infections (C5/6 Quad). However, the last 3-4 years I have been experiencing frequent UTIs. So far, I have not been able to avoid this through the normal channels (cranberry juice, lots of water etc.). Over the years I have had several sphincterotomy procedures, which was the preferred method of my urologist. Lately I have been considering a SPC, but only have two friends who have done it. One of them swears by the procedure and the other is not happy. Both of these gentlemen have been dealing with spinal cord injury for over 40 years.
After reading through your site, I am still not 100% clear if having a SPC will likely reduce the amount of infections that I’m having. I wish that I’d known about SPC earlier for the convenience, but I’m not sure if that is enough reason for me to try it now.
I’m also wondering if any folks having a SPC have had to deal with autonomic dysreflexia/hyperreflexia in a severe form? I did read where a few people had sweating for several months, but I’m afraid of the headaches, high blood pressure, profuse sweating etc. This is not a problem that I have had for several years, but it always reappears when I face any type of new trauma, such as surgery, bad infections etc.
Lastly, I’m trying to clarify if the Mandelamine would be helpful even while I am on condom drainage? If possible, I would like to try any noninvasive strategy that could help reduce or eliminate these infections. Recently I have been experimenting with D-Mannose. Has anyone tried this, and if so what dosage and how often.
I will definitely pass the site information along to my other friends here in Canada. Thanks again. Roger
babs: Immobility is not a problem. Most people have a supra pubic catheter due to their lack of mobility and often are unable to self cath.
Dave H: To reduce pain apply a babies teething gel around the site. If it provides some relief you might want to use a more powerful topical local anesthetic like Lidocaine or Zylocaine. The weeping goo should lessen over the next month or two, it’s just your body trying to expel the catheter. Activity causes rubbing which causes pain but of more concern continuous rubbing has also been attributed to causing tumors.
Roger: Thanks mate. I would try an InDwelling Catheter IDC. They can be left in. The incidence rate of UTI between an IDC and SPC are around the same. I’m not a big fan of sphincterotomy. If you have tried the IDC method unsuccessfully SPC would be next. It’s always reversible. I’m about to publish an article here on Autonomic Dysreflexia. While I don’t suffer from it greatly anymore when I did I found IDC and SPC incited the condition equally. As you know the causes and severity will vary between individuals but should not be overly severe in either case. It’s best to stop UTI at the cause though often hard to pinpoint. Mandelamine should reduce UTI in any case as it’s converted to formaldehyde in the bladder. Many fully functioning people benefit from the drug. Can’t hurt to try D-Mannose. General dosage is one teaspoon daily. For acute urinary tract infections one teaspoon every 3-4 hours for 24-48 hours.
Thanks Graham for the teething gel tip I will try that. Do you suggest any form of dressing or just leaving it to breathe?
To anyone worried about a supra pubic catheter on the grounds of insertion surgery, I’ll share my experience. I had mine inserted in A&E thats ER if your in the US. This was due to me having a full bladder one litre with no other way to expel it. There was no time for operating theatres. After a quick local anesthetic and a tiny incision the catheter was pushed through the bladder wall, it all took about two minutes and was painless.
Depends how much gel you need Dave, generally it’s little enough to not need covering. 5 weeks post op just keep activity to a minimum for a few weeks yet to reduce the small bleeds and allow a good heal. Thanks for sharing your experience with us.
Hello Graham, your website info is fantastic. I have a blocked uretha caused by calcified Prostate and the doc put in a Supra Pubic Tube. I use a leg bag during day and a foley bag at night. My problem is the tube gets blocked up frequently. I do flush twice a day with water but cant take much more than 2 ounces. I am also leaking thru the penis when the tube is blocked. I was passing stones and sand thru my penis but it looks like that stopped. I have had the tube replaced by doc 3 times since my operation Sep25th.
I will try the beer… sounds good… I will also drink lots of filtered water and keep checking the tube. I try to keep everything clean. Penis burns which indicates UTI is present… was taking AZO but got to be careful with that stuff becasue it stains….
Question: am I doing things right???? How can I cut down on UTI…?? RayT
Ray: Thank-you. 2 ounces (60 ml) is a reasonable amount for a bladder to hold and while bypassing thru the penis is inconvenient it’s a good safety valve for a blocked catheter. Sounds like you’re doing all the right things. Taking Mandelamine (Hiprex, Ural, Urex) or D-Mannose should further reduce sediment which in turn reduces blockages and UTI that build from sediment. It would be good to get to a point where you no longer need bladder washouts as they open you to infection. Checking your pH and the other tips in the article may also help.
Graham, thanks for the tips. I just returned from the urologist, who suggests that I might try a low dose of Macrobid (1 per day) for a month or two! He is not keen on SPC (or any other procedures for that matter, except for the sphincterotomies). I asked him about some of the uti prevention ideas which you have suggested, and although he believes that they could be effective, he did not seem convinced.
Since I am not a big fan of antibiotics (unless really necessary), I would rather try an aggressive prevention strategy. Three questions:
1. Should I be taking BOTH Mandelamine and D-Mannose?
2. I am finishing a seven-day run of Macrobid today and am assuming that I am mostly infection free. If my current infection is not fully eliminated, do you think that the preventative measures that you have outlined will KILL any remaining infection, or is it normally only useful for preventative?
3. Is there a good online source of the alkaline versus acidic foods, or so I just google and put together my own list?
Thanks Roger
I’m not a doctor Roger and don’t know your full case history but you said you’ve had several sphincterotomies and still have problems so why go through all that again. If it were me, I’d seek a second professional opinion. 1. One or the other is best. 2. Kill and prevent, some bacteria can only be killed with specific antibiotics. 3. Our article names most common types but there’s definately more.
Graham, you are fantastic… I tried the beer and it is working great. My urlogist also said to try pure real lemon juice and water w/sugar substitute to taste… both are keeping me UTI free and urine is nice and clean.. dont see much heavy sediment coming out. No more stones and no sand/grit coming from penis. I am still flushing but now I am using bottled water 2oz and a touch of distilled white vineger(per doc). He also advised me to block off the tube for about 1 hour each day and start voiding from the tube. So far so good. Looking forward to spending Thanksgiving w/family (1st time out since I had Supra Pubic Tube) put in. I do walk to mailbox but it feels like my whole lower part of me wants to come out thru my penis… after a while it calms down.
It is just great to talk to someone other than the doc… thank you Graham have a great day tmw… RayT
I have been wearing a foley for the past 2 years due to a shrunken bladder caused by external beem radation and later cyro surgery[bladder freeze]. these procedures were done several years ago. I have very few infections but have leakage and spams sometimes when I’m standing or get out of a car. when I am in a recliner or sleeping at night I have no leakage and no spasm. my bladder only hold 4 oz. now the dr. has suggested a s p t procedure be done if first I pass a video urodymanics test. after reading all the comments i think I might be better off as is. appreciate your thoughts. thanks so much
Hi Charles, I’d be inclined to agree with you. It will come down to a personal choice only you can make after weighing up the advantages and disadvantages of a supra pubic tube. If your current leakages are annoying you could try an SPT. If it’s of no significant improvement it’s always reversible.
I have a sci for almost 13 years. I used the intermitten catheter for the first few years, then the catheter with leg bag. I started to leak and the uroligist found a tumor in my urethra, and it also was way too large (urethra). A biopsy showed that it was not cancer TG. 4 weeks ago I had a supra-pubic done. For the first 2 weeks I wasn\’t leaking from, the urethra, but then I did again, but not alot. Today a home nurse came to change the catheter. There was some redness around the area, and she had some problem pulling the catheter out. A lot of blood followed, but then stopped. It seemed to be alright and the urine went into the bag. After she left, about 4 PM, I took a nap and when I woke up, I had a little urine in the bag and the rest on the waterproof pad I was laying on. It was socking wet. It looks like there is no urine coming out of the catheter, it just straight comes out from the urethra. Now it\’s night time and I don\’t know what I should do. It hurts some, but I don\’t have all the sensation in that area. Is this all normal? Shouldn\’t it be healed more by now? This is allnew to me, and I am kinnda scared now. Should I go to the emergency when something like that happens or can it wait til morning and I call my urology?
Hi Oddy, Shifting your position sitting/lying and twisting the catheter may help. A blood clot has probably blocked your catheter or the eyelets are presssing against the bladder wall preventing flow. Grab a sterile syringe 20 or 50 ml works best and fill it with boiled cooled water, ensure it’s cooled! Disconnect your bag plug the syringe into the catheter and slowly push all the water in then gently withdraw. Repeat a few times. Pushing the water in should clear the clot/blockage if you can’t, replace the catheter. If you can’t withdraw the water the eyelets are probably against the bladder wall. Shift position and twist catheter. If that doesn’t help leave the supra pubic catheter in and put an indwelling one in as well until you can get to the emergency room. It’s still pretty fresh at 4 weeks, a little pain is normal. Please let us know how you go.
Thank you Graham. You never guess what happened. After I got off the computer, I called the nurse, she didn’t know what to do, and said, she’ll be here in the morning. I layed down, and wanted to change the dressing, and I see the catheter inflated (the balloon) sticking out from the urethra at the bottom. I thought I was seeing things. So I let the water out with the syringe and pulled the catheter ’til I had a back-flow, and filled the ballon up again. Now, I am having no more problems. I called the nurse back, and told her. She said , that never happened before. When she was here, she had student nurse with her, who done the procedure, and she pushed the catheter in way too far. I kept telling them, that the catheter wasn’t long enough. Thank you for your advise, it could’ve been a blocked catheter, that’s what the nurse thought also. I will keep your advise printed, in case I get a blocked one.
Wow your nurses might need retraining, they could have done serious damage. We once inflated my supra pubic catheter inside my urethra, I bled for days (as in article). To push it right through and out the other end.. wow. My carers grab the catheter right at the site, ensure the balloon is fully deflated and withdraw so they can see how far it was pushed in. Insert the new catheter an inch further than the old and inflate the balloon. It should slip back a little until the balloon rests against the bladder wall. A big drink before a catheter change helps give some room in the bladder to position the catheter correctly. I’m glad you got it sorted out Oddy.
Hello. We just got home from the Urologist and my husband has to have a SPC put in. This is one of MANY setbacks after an accident which resulted in cord damage. He is obviosly not happy. Any words of advice? Overall, is anyone experienced success with this and becoming active again? Any insight would be great! We’re new to this. :(
Hello Jessie, if you read the article and comments here on Supra Pubic Catheters you’ll find many live full active lifestyles with an SPC.
Hi, Have had the SPC for one year now. Yet, site is never really dryed up, excreting small spots of blood etc. Is this normal?
I had lots of pain after a few months of having a SPC. The problem I believed was a shrinking bladder, and the catheter rubbing on the shirking bladder wall. I installed a valve (taken off an old foley bag) and installed just below the catheter. Presto, the pain ceased. I turn the valve off, then leave it turned off until I feel I have to urinate. I then turn the valve on and drain the bladder into the urinary bag. I don’t do this all the time, maybe one or two times a day, or just before I go to bed with the night bag attached. The valve is easy to open and close even with my pants on. I just reach down and turn the valve off and on through my pants (the fabric). Its easy to do, and even in public I have had no problem with calling attention to myself. The valve also is very handy while changing bags, because I can turn off the foley tube urine while I am changing the leg or night bags. I have had trouble with tubes coming apart at the most embarrassing times. I solved it by installing small radiator clamps.
One problem I have not solved fully, is keeping the leg strap up on my leg without pulling down on the catheter. I have tried a half dozen methods, the latest is using a strap around my chest, with another strap that goes down to the leg strap. It seems to work out OK, but does anyone have a better idea?
Improka: yes it’s normal. The body correctly thinks the catheter is a foreign object and constantly tries to expell it, so it rarely fully heals.
prb: thanks for the tips. I’ve seen the garter belt method before, it was a small band above the knee and garter belts each side to leg bag. Apart from a pressure stocking with leg bag staps sewn to it my only other thought is fish hooks, have you seen those guys who hang their whole body from big fish hook? Ouch.
PRB, Hi just to let you know there is a product called a statlock that you stick to on your skin and it holds your catheter in place so you are less likely to pull it. I use one because the straps dig into my legs, It is very secure and can only be removed with adhesive remover.
Also you can get a product known as a flip flow valve which will save you making your own.
I have had an ureathel catheter since May 2009 however on Tues 9th Feb this week I had a SPC fitted, I’m having alot of spasms and leakage today but I know its early days and things need to settle down.
hi everyone. had a spc fitted two day ago, would like to know if should keep covered in shower and any other tips you may have. thanks again babs
Shelly: Thankyou!
babs: I found it got so wet I’d need to change the dressing anyway so took it off during shower. After shower pat dry well and sterilize the area as best you can then apply a new dressing. After 4-6 weeks you shouldn’t require any type of dressing. Heaps of great tips in the article and comments here.
Shelly, thanks for the advise. I have come to rely on these valves, and its not too hard to remove them from the catheter bags, but probably not too clean. What would really be a good thing, are three way valves, which would really be handy in flushing the tubes and catheters without having to remove any tubes.
Sometimes for cleaning, I use clorox, mouth wash (which has a lot of alcohol in it), hydrogen peroxide, or just plain water.
Yet the other day I was told (from a test i took) I have a staff infection, but I didn’t have the slightest felling I had it, except the smell, which I have had a long time. I take so many drugs I always thought that it was just the drugs making the smell. I was told that some people who had problems with bladder infections take a low dose of sulfameth/trimethoprim every day.
The statlock you mentioned makes me wonder of fungus would build up under neath them. This happens with me if paper tape is left on too long.
I had my SPC a year ago, and had very little trouble, until after two months, and I had lots of spasms, but they stopped when I started using a valve to shut off the flow from my bladder. This helped because the bladder got smaller from not having to store urine. The valve caused urine to build up and the bladder got larger. I know you must be very careful to not go too far and let urine backup into the kidneys. I just do it while I am awake, two or three times a day. I turn the valve off and on through my pants leg, and even though I am in public nobody knows I am doing it . Will look into the flip flow valves you were talking about.
Thank you very much, God Bless
Graham, thanks for your feedback. One more thing. Since, I had the SPC operation 1 year ago, I always had a dressing. Since it leaks. Should I remove or keep the dressing? Would it help dry it out?
prb: Vinegar will kill %80-90 of bacteria at a ratio of 1 part vinegar 3 parts water if that works out cheaper. I don’t know of any 3 way flip flow type valves but will double check some continence aids catalogs I have here.
babs: You said 2 days ago? If 1 year ago unless you’re bypassing a lot of urine I would leave it uncovered for awhile and see how it goes. Dressings can get expensive. Hopefully it will dry out within 3-4 weeks and only require a sterile wipe around the site morning and night. Remember, the supra pubic catheter site rarely if ever truly heals over.
hi again everybody. spc doing just fine, now almost 4 weeks since i had it fitted dont want to speak too early but so far the best thing . you might be getting me mixed up with another babs as some of the comments dont tie in with mine. thankyou again. babs
Hi, Newbie here. When do the stitches come out of my SPC? Great info here. Look forward to talking with everyone. Mike
Hi Mike, it’s not common to have stitches after a super pubic catheter operation. Typical time frames would apply, cat-gut staples or nylon 4-6 weeks, self dissolving 6-8 weeks.
Graham, thanks for your reply. I had one stitch holding the Foley in place. My night time drain bag caused slight rotation/pulling which pulled on the stitch. Yesterday I removed the stitch and noticed the cath sliding out. A quick check and the balloon was still inflated. OK, I found the cath was inserted half way and held in place by one stitch. I’m assuming the whole idea is to keep the balloon off the inside bladder wound until it heals. I am now doing this using catheter stabilization stick on pads.
I suppose the doctor felt he did not need to discuss this since I have been dealing with incontinence since 2002 when I fell off a ladder. Since 2002 I have used every kind of catheter.
Graham, I’m grateful for your site and help.
Mike in Tampa, FL. USA
Thanks Mike, in all my experience I have never heard of supra pubic catheters being stitched, but I am not an MD. In my opinion correct initial positioning is vital to stop the bladder healing over and getting a tube from stomach wall to bladder to form correctly. If it were me, I’d deflate the catheter balloon, gently push the cath all the way into bladder and inflate the balloon. You should then feel the cath slip back a little and rest against the bladder wall. Avoid that overnight pulling. I agree with your conclusion, I think the initial incision was made to big.
Hello Grahem
i have just been searching the internet for any help and advice i can get about my husband and i come across you site which i have just spent an hour going through :-)
My husband has self cathertarised for 7 years now as he had strictures. he was on cefalaxin antibiotics 1 a day for 7 years tuesday just gone i had to rush him to hospital having to find he had cepsis. due to a untreated uti which he went to the doctors 6 weeks ago saying that he could self cathertarize properly it felt tight but then would jet out abit of wee then just suddenly stop. the dr told him to stop taking the tabs and to do a urine sample. so he did that 3 days later rang for results it had come back rejected due to insufficiant information on the bottle this happend 4 times so then that was 5 weeks down the line and still no results no anti biotics and he couldnt get enough wee out.
we rang the docs last monday and they said that everything was satisfactury no futhur action.in the last week he has gone through 50 catherters trying to go to the toilet. then the next day his being rushed into hospital with this awful thing due to the neglagence of the doctor.which rang me on wednesday just gone and told me that the 1st lot of samples that he did (that were supposidly rejected) came back abnormal. he has got to go and see a urologist next week to discuss a longterm thing for him, i suppose what im asking would you think would be best the spc??? he has a catherter in now and he said he has never got rid of so much urine in a long time. hope to hear from you soon
Kind Regards, Gemma
Hi Gemma, as hubby has full sensation he may suffer considerable discomfort from a Supra Pubic Catheter (SPC). If he requires a permanent catheter I suggest an indwelling catheter (IDC) as it’s non-invasive and the UTI incidence rate between SPC and IDC are equal. If that is unsatisfactory then sure, he could try an SPC, it’s always reversible. You may also want to look into a stoma. No antibiotic is meant to be taken for 7 years, sepsis can be life threatening, get clear and knock off the antibiotics, meanwhile I’d use the IDC method.
hi graham, thank you for your reply. i just told hubby what your reply was. he doesnt have any sensations the only way he knows when to go to the toilet is by his belly if it becomes large and firm. now im starting to think should he have been self catherterizing? would you be able to explain an idc and stoma he is quite worried about what is going to happen even though he dont say it i can see it, i keep trying to reassure him but i think with the help of this site he may feel a little better in himself. thank you again for the reply, regards, gemma
hi my name is adrian in uk just being fiited with ain dwelling catheter and their i was qietalot my difficuty insurting it. i had to go to have a catheter inserted in hospital and stay over night. The next day the head doctor consultant came round and said he was not happy with a indwelling catheter then suggested a spc.I suffered a head injury at the age off 7yrs and i had to relearn every aspect of day to day living over again and persional hygien walking and talking. But as i am a nurse at the hospial and look pritty normal the dr expect me to under stand every aspect on my own and i don’t. I don’t like asking for help this is the last thing i need i need help pleae help and addvise me i have aready tried isc,that don’t work for me just increasing usage of them.i have also tried conveines these don’t work for me either.
how offten do spc need changing? what about sex? utis? at the moment i have a long tearm catheter in i am in quiet a lot of pain espicily at the tip. help, thank adrian
Gemma: 1. An indwelling catheter IDC is simply one left in place to drain the bladder. Much like your hubby does self cath only the catheter balloon is inflated to keep the catheter in place. A drain bag or similar is then plugged onto the catheter to collect urine. It involves no surgery and is something he can begin immediately and continue as long as he likes. 2. A supra pubic catheter SPC is similar only it does require a simple surgery to enable the catheter be passed via stomach wall rather than through penis. 3. There are several types of urostomies, a surgical procedure to divert urine away from a diseased or defective bladder. The ileal or cecal conduit procedures are the most common urostomies. Either a section at the end of the small bowel (ileum) or at the beginning of the large intestine (cecum) is surgically removed and relocated as a passageway (conduit) for urine to pass from the kidneys to the outside of the body through a stoma, a self sealing opening near belly button.
Adrian: Depending on catheter type it can be left in for one to three months. I covered sex and lifestyle with an SPC in the article at top of this page and in my “Sex After Spinal Cord Injury” article, in general there are no special requirements. The incidence rate of UTI for IDC and SPC are virtually the same. Good hygiene and sterile changes should be practiced for any catheter method. Diet and medications can also reduce UTI frequency.
hi graham, thanks for the last reapliy, As i have already told u i have just had a idc fitted 3days post after quiet a painful time it took the nurses 3 goes to insurt the catheter i am still in very much pain around the tip is this useual ,and i am getting a discharge from the tip as well ? why? yet again is this usal and will it go away. thanks .adrian
hey graham, i too am a quadraplegic, i was in a horrible car accident in 2003 when i was 16 and have been self cathing for 6 1/2 years so theres a catheter going in and out of me a couple times a day. we take all sterile precautions and i take cranberry and vitamin c tablets and i drink 8-10 glasses of water daily…sometimes more. yet i still get UTIs sometimes bad ones. ive been contemplating getting an SPC because a couple doctors have told me it will help reduce UTIs and it seems like you have really benefitted from SPC as well. so would you say that an SPC is better for me or do you have a better suggetstion?
Adrian: Tip of what? If you mean catheter site (the insertion point on your tummy) use a numbing gel. You’ve only had it 3-4 days so some pain is expected for upto 4-6 weeks then it should settle down. The discharge is your body trying to expel the catheter, it should also settle down after 4-6 weeks. This is all covered in the article Adrian.
Hi Richard: Bacteria often forms on sediment so reducing sediment helps reduce UTI. Doctor’s suggest +1000 mg of vitamin C and +3 litres (6.5 pints) of water/day to be of any benefit. I listed a bunch of other things to reduce bladder sediment/infection in the article including naturally brewed beer, Hiprex etc. Before you go for a Supra Pubic Catheter try an IDC. It’s the same technique as self cath but you inflate the balloon, leave the catheter in place, and connect a drain bag or other urine collection device to create a closed system. IDC and SPC have about the same infection rates. So I don’t think UTI or sediment alone are reason enough to warrant an SPC. If there’s further reason, free to engauge in sex, esthetics, IDC is painful or such, then sure an SPC can be advantageous.
hi grahem, just an update had to rush hubby in again monday just gone nightmare. he self cathertarises they were going to put a stem in today which we have no idea what that is wondered if you knew?
but they decided against it they are now saying that his cathertarising to much in a day when he is only doing it 2 to 3 times a day. they have told him not to cathertarise till the night time once a day surely if he is having problems with self cathertarising thats going to make no difference if anything make him bloated but i suppose they are the doctors. they have said the reason he has problems self cathertarising it that his bladder is collapsing around the catherter and stopping the urine coming out. me personally thinks that they cant be bothered with him. i dont mean to sound harsh to my hubby but this is getting on top me now worrying all the time ill stick by him but just wish they would do something to give him a better quality of life, hope to hear from you soon.