In January 2013 an accident left me with spinal injury at the base of my neck, paralysis below that site, severe spasticity and double incontinence. My urethra and anus are permanently closed except when opened by manual intervention. I was in a spinal injuries hospital until the end of July. A suprapubic catheter was installed about four months after my spinal injury. Until then nurses used intermittent urethral catheterisation. I was due to be discharged from hospital soon, and because I have very little use of my hands, intermittent self-catheterisation would have been impossible.
It was installed as a minor operation of less than an hour using a local anaesthetic. It goes directly into my bladder about two or three inches below my navel. My catheter is connected to a leg bag (750ml.) which is emptied around 10am, 5pm and 8.30pm by carers and changed weekly. Overnight my leg bag is connected to a night bag of 2 litres. This is emptied around 10am and changed weekly.
I wear my catheter and leg bag outside my trousers instead of inside. This allows easier access to it and avoids minor sores which often developed on my left leg where the joint between catheter and leg bag caused some rubbing of my skin when my catheter was inside my trousers.
There are many different types of suprapubic catheter. If yours is causing problems, try a different one. Some block frequently with little sediment. One that works well for me is a Rusch CE 0124 A3101
My biggest problems: URINARY TRACT INFECTIONS AND CATHETER BLOCKAGES
Between May 2013 and January 2016 I had occasional urinary tract infections (UTIs) treated successfully with Nitrofurantoin (3x50mg tablets per day for a few days). Then from January until July 2016 I had 23 catheter blockages, all between about 11pm and 1am. I still had occasional UTIs treated successfully with Nitrofurantoin. A blockage is a terrible and dangerous experience. I am sweating, spasms jolting, throbbing, an urge to move my legs which I can not do, skin rashes, itching. Because of my spinal injury, there is a risk of autonomic dysreflexia with multiple organ failure and death (Autonomic Dysreflexia - StatPearls - NCBI Bookshelf (nih.gov) although I have never had most of the symptoms mentioned in this paper.) This will continue until relief arrives by unblocking or replacing it. The threat of a blockage had become a big concern and made me apprehensive of going to bed.
Following two blockages the previous night, on 24th July 2016 I had another bout of sweating. I thought it was another blockage. It wasn't. It was a UTI: it became clear to me that many of the blockages and UTIs had occurred at the same time: it appeared that the same bacteria were causing both: so if the UTIs could be stopped, so too would most of the blockages. (It appears that blockages not caused by sediment are mostly caused by the catheter touching the bladder wall. If a catheter blocks with no sediment visible, it is always worth moving the catheter from side to side near the entry point.)
To stop the UTIs I started to use Nitrofurantoin to prevent them (previously I had used it to cure them); so I took 50mg each evening for 30 days, then gradually reduced it to about 3x50mg tablets per month. (The dosage I use to cure a UTI is about 150mg for up to 3-4 days.) I was having weekly bladder wash-outs which are particularly useful for reaching the last two or three inches of my catheter out of view inside me. This worked very well: I had only a few minor UTIs and no blockage.
I do not know for how many people with catheter blockages Nitrofurantoin would work. Not all blockages are caused by bacteria on the Nitrofurantoin hit-list. Anyone who tries it without success might try a different antibiotic preferably preceded by an analysis of their catheter contents at the time of the blockage to find out what other bacteria could have been responsible. In my case it is likely that the sediment is caused by the bacterium Staphylococcus saprophyticus so other antibiotics which kill this bacterium can be expected to stop my blockages. The reasons for this are explained in dailystrength.org/user/prof... Preventing Urinary Tract Infections and Catheter Blockages and incontinentsupport.org/phpB...
It should be remembered that Nitrofurantoin kills the bacteria which commonly create sediment causing blockages. It stops the production of more sediment but it does not dissolve sediment already in the catheter: so it is possible to get a blockage after taking Nitrofurantoin.
As well as blockages in the catheter, it is possible for other parts of the drainage tubes for a suprapubic catheter to become blocked by sediment from the same bacteria as can block the catheter. The tube connecting the catheter to the leg bag is much wider than the catheter: so the contents move more slowly than when in the catheter and so are more likely to deposit any sediment being carried. (Some catheters are also wider near the exit to the leg bag and are prone to block there for the same reason). Being visible, these can usually be cleared by manual manipulation, but can cause problems overnight, especially for those who live alone. This is a good reason to replace leg bags after about a week or sooner if there is a considerable amount of sediment.
Sometimes a catheter can block when there is very little sediment visible. The sediment can be in the two or three inches inside the bladder: if in doubt take Nitrofurantoin.
CHECKLIST OF WHAT TO TRY IF YOU THINK YOUR CATHETER IS BLOCKED
* Look for plug of sediment in your catheter and tube from your catheter to your leg bag; if so, squeeze and manipulate.
* Move catheter up and down, side to side near entry point in case the tip is pressing against your bladder wall.
* Look for kink or sharp bend in catheter causing your catheter to collapse.
* Check that your catheter and leg bag tube are pointing downwards.
* Make sure your leg bag is not full.
SUPPORTING METHODS TO PREVENT UTIs AND BLOCKAGES
If the blockage is in the visible part of the catheter (often near the end where it becomes wider to attach to the leg bag), or in the tube leading to the leg bag, it might be removable by manual manipulation.
Starting soon after the blockages I had weekly bladder washouts. These have the advantage or reaching the last few inches of my catheter inside my bladder but occasionally have caused blockages. When there has been some sediment in my catheter, they have washed it down and caused a blockage in the last few inches. One the other hand, a blocked catheter can sometimes be unblocked by a bladder wash-out. Opinion on how useful they are in reducing the chances of catheter blockages among the nurses I know is divided: some say that they just stir up sediment in the bladder and remove very little. I am inclined to believe that might be so, but removing sediment from the last few inches in the catheter is valuable even if it is just returned into the bladder. It gives a chance of it coming out in smaller pieces that will not block the catheter.
Drinking plenty of liquid is widely recommended to wash out sediment, although it will exacerbate any blockage that does occur. Also, care must be taken not to exceed provisions for emptying leg bag and night bag.
Bacteria can be curbed by an acidic environment. Vinegar kills E. coli (a cause of UTIs), Salmonella and Pseudomonas. Lemons are often recommended.
OTHER CAUSES OF CATHETER PROBLEMS
Not all blockages are caused by sediment. Sometimes the flow of urine has been obstructed by the end of the catheter pressing against my bladder wall. This can be fixed by moving the catheter sideways. I avoid lying on my catheter or leg bag tube and check to ensure there are no bends sharp enough for the tube to collapse.
My drainage system depends on gravity to flow. In bed I need to ensure that the system points downwards everywhere.
OTHER ISSUES WITH MY CATHETER
It has probably been the best option available but there have been problems:
It has probably caused some, if not most, of the fairly frequent urinary tract infections. These seem likely to have been at least partly the result of bacteria entering around my catheter site.
Another problem of my suprapubic catheter has been that there is often a small amount of leakage around the place where it enters me. I pull my incontinence pad (Abri San Premium 5) far enough up at the front to cover my catheter site.
How often should suprapubic catheters be changed? Changing a catheter usually leaves trauma around the site, additional leakage for a while and more opportunity for bacteria to enter and cause UTIs. I could not find a good answer as to why 12 weeks is the conventional period, so I tried a little longer. It worked to some extent, but after the catheter came out on one occasion I have returned to 12 weeks. Longer than that does appear to result in an increased risk of deterioration of the mechanism holding it in place.
Costs: my pad is changed only once each day and costs around £10 for 36; washable unisex fixation knickers cost around £1 each, depending on kind of knickers (cuff style are more expensive than nets), quantity bought (discounts for large orders) and source. Leg bags cost around £2.50, night bags £20, each changed weekly; the catheter costs £7 and is changed every 12 weeks.
SOME REFLECTIONS
For me a suprapubic catheter has probably been the best option available; despite many problems it has enabled me to get a night's sleep usually without interruptions and has enabled me to retain some independence by living at home. My overnight urine production averages about 2 litres - impractical to deal with using an intermittent urethral catheter.
Living alone makes the possibility of an overnight catheter blockage dangerous. They are still a constant threat for me. I spend time most evenings trying to ensure the threat is as small as possible. When one does happen, I have to inspect the catheter to look for any blockage. If there is a blockage visible, I can usually remove it manually. I keep a bedside lamp within reach. If not, the blockage must be in the last two or three inches of my catheter inside me or by the catheter end inside me being against my bladder wall. If I can not fix it myself, I have to phone for the overnight nurses. I am trembling violently and sweating profusely. Sometimes it takes over 2 hours before they arrive to save me from a horrible death by changing my catheter. If anything were to go wrong to prevent me phoning - losing my phone, fault with phone or electricity supply for example - that would be a terrible end for me.
Being confined to a wheelchair, the appearance of the leg bag is not an issue for me (I simply lay it on the upper parts of my legs) but it might be for those who are more active.
Compared with other ways of accommodating incontinence, I do not get much mess needing protection and cleaning - just a small amount of leakage around my catheter entry point.
Nurses tell me that they spend a considerable part of their time unblocking catheters, especially overnight. It is unfortunate that more attention is not given to preventing them.
I'm new to Underactive Bladder condition. 
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