Preventing my urinary tract infection... - The Simon Foundat...

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Preventing my urinary tract infections and catheter blockages

BarrySimpson
BarrySimpson

AN OVERNIGHT CATHETER BLOCKAGE

It's coming up to 1'o clock in the morning. I waken up sweating profusely. I'm getting tremendous shocks of spasms. I have an overwhelming urge to move my legs but I can't. I can't move: following a spinal injury in 2013, I have been paralysed from the shoulders down. I fumble round the bed to find the 'phone. Eventually I find it, despite very little movement or sensation in my hands, now clawed up like an animal's paws. With my knuckles and a protruding little finger, I 'phone for a nurse, desperately trying to hold the 'phone to my ear. Fortunately a kind and thoughtful nurse had previously given me their direct number. The spasms and sweating are becoming even more severe. By the time she arrives, which can be over two hours later, the bedsheets are wet with sweat. 'Sorry I took so long. I've had a lot of catheter blockages tonight'.

Another one: between the nights of 16/17th January and 23/24th July 2016 I had 23 like that, typically between about midnight and 1am - long enough for urine to build up if my catheter had actually become blocked immediately after going to bed.

THE PENNY DROPS

Late on the morning of 24th July 2016 I began sweating heavily and my spasms became more severe. Having had two blockages the previous night, I thought this might be another one; so I called for a district nurse. When she came, she assured me that there was no blockage and 'phoned for medical advice. I could hear her part of the conversation. As soon as her conversation had finished, she told me that I had a suspected septicemia and that she would 'phone for an ambulance for immediate admission to hospital. I was surprised because I had none of the symptoms such as chills, high temperature, fast breathing or high pulse rate; indeed, her telephone conversation had made no reference to any of these symptoms.

healthline.com/health/septi...

The nurse left and the ambulance soon arrived. The two paramedics took the standard readings such as pulse, breathing and temperature: everything was normal. I declined the invitation to go to hospital and assured the paramedics that I would take some Nitrofurantoin: my urinary tract infection was soon cleared.

This was not the first time that symptoms of an infection followed a blockage: the bacteria causing the infections were also creating the sediment which caused most of the blockages: so using Nitrofurantoin to prevent infections (rather than to cure them) in my case, also prevented catheter blockages.

From the evening of 24th July I started taking 50mg Nitrofurantoin each day at about 8pm. I have had no blockage since.

In these circumstances, I try to maintain an awareness of the symptoms of septicaemia, the infection, and sepsis, the body's inflammatory reaction to it and to be aware that urinary infections can develop into septicaemia and sepsis; and because I have a spinal injury, also autonomic dysreflexia:

webmd.com/hypertension-high...

The Users' Information Leaflet says that the normal dose of Nitrofurantoin for preventing infections is 50mg or 100mg daily at night but does not say for how long. On the principle that it is best not to take more medication than necessary, after 30 days taking 50mg, I began tentatively to omit it on a few nights and risk the horror of a blockage. For about 3 months I took 50mg on 3-4 nights per week and then reduced it further to only nights when I had a considerable amount of sediment in my catheter or sweating which could warn of a urinary infection.

SUPPORTING METHODS TO PREVENT CATHETER BLOCKAGES

The district nurses started giving me weekly bladder wash-outs soon after my blockages started: so the first few nights I omitted Nitrofurantoin were wash-out days. Wash-outs probably reduced the number of blockages but did not eliminate them. Not long after I reduced Nitrofurantoin to less than every night, I did begin to get sediment in my catheter. This seems to have been kept in amounts insufficient to cause a blockage by carers rolling the catheter between their hands to disturb it and by consuming natural antibiotics, including adding vinegar to food and drinking lemon tea (not surprising - the bladder wash-out solution contains citric acid).

To make lemon tea, I simply cut an unpeeled lemon in half, cut up the half into pieces or slices put in a cup and add hot water, topping up several times and squeezing the lemon with a spoon.

I will never know whether rolling my catheter and taking natural antibiotics would have been sufficient to stop the blockages without Nitrofurantoin. I started them in January 2017, six months after my blockages had been stopped. It does appear that they have allowed a reduction in the dose, but in the amounts I have been taking (1/2 lemon and 30ml. vinegar per day) they would probably not be sufficient alone. For example, on the evening of 9th February 2018 after consuming the usual amounts of lemon and vinegar, my catheter had a large amount of sediment in it: so I took 50mg. Nitrofurantoin: the following morning it was clear.

NITROFURANTOIN STOPPED MY BLOCKAGES BUT WHAT STARTED THEM?

I do not have a good answer to this. I had my catheter for 2 years and 8 months before I had a blockage. This period included about a dozen urinary infections.

Analysis of the contents of my catheter at the time of a blockage was never made. Identification of the bacteria responsible in this way would have been helpful to reduce the number of infections and blockages.

However, it is possible to identify the culprits. The bacteria responsible must have three properties:

1 They must be killed by Nitrofurantoin;

2 They must cause urinary tract infections;

3 They must cause enough sediment in urine to cause catheter blockages.

The only bacteria which fit all three criteria are Staphylococcus saprophyticus and E. coli.

What I have reported is, of course, my own story. I do not know for how many other people it might be effective but there seems to be a reasonable expectation that it might work for others - male or female - whose catheters are being blocked by sediment created by bacteria for which Nitrofurantoin is effective.

So it seems that blockages caused by bladder stones would not be prevented by Nitrofurantoin because the bacterium involved is Proteus mirabilis:

nature.com/sc/journal/v48/n...

Nitrofurantoin will not be suitable for everyone. The Users' Information Leaflet lists many precautions and possible side effects.

It might aggravate some conditions, possibly including Parkinson's disease:

ehealthme.com/ds/nitrofuran...

I have not had any side effects at the doses explained but others might. If Nitrofurantoin does not stop your infections and blockages as it did for me, it might be because yours are being caused by a different bacterium from mine. A sample of the contents of your catheter at the time of a blockage would enable the bacterium responsible to be identified and an appropriate antibiotic might be chosen to use instead of Nitrofurantoin.

SUMMARY OF METHODS TO PREVENT URINARY TRACT INFECTIONS AND CATHETER BLOCKAGES

May 2013 to 15th January 2016: no blockage; Nitrofurantoin taken occasionally to cure urinary infections.

16/17th January 2016 to 23/24th July 2016: 23 blockages; Nitrofurantoin taken occasionally to cure urinary infections.

Since March 2016: weekly bladder wash-outs.

Since 24th July 2016: no blockage;

50mg Nitrofurantoin taken on these evenings to prevent infections and blockages:

2016

July 24-31;

August 1-22, 24, 25, 26, 28, 29, 30;

September 1, 2, 4, 7, 8, 10, 13, 16, 18, 19, 22, 25;

October 1, 5, 6, 7, 11, 14, 15, 17, 20(100mg), 21, 22, 23, 25, 29, 31;

November 4, 5, 7, 10, 13, 16, 19, 22, 24, 26, 28;

December 1, 3, 5, 8, 11, 12, 17, 22, 31.

Total for July - December 2016: 84x50mg

2017

January 8, 16, 18, 22;

February 5, 13, 16, 20, 25;

March 11, 25;

April 2, 8, 13, 22, 28;

May 1, 12, 19;

June 3, 13, 18;

July 2, 10, 23;

August 14, 15;

September 17, 18;

October 11, 17;

November 2, 14;

December - none.

Total for 2017: 33x50mg

2018

January 5, 22, 31;

February 9, 15;

March 2, 9, 10, 17

April 8, 9, 23, 29

May 12

June 11, 16

July 1, 16, 29

August 2, 13

Catheter repositioning to prevent non-sedimentary blockages.

Since January 2017: rolling catheter between hands and consumption of natural antibiotics: lemon tea (half a lemon), 30ml. vinegar on food.

11 Replies

What size are you using and do you have a valve on it? as valve like the Bard flip flo reduce blockages as you open when need to go instad of on constant drain which allows crud to build up around tip.

One of the things that happens is the bladder walls are drawn into catheter holes and tip can bury even worse with a leg bag as get syphoning(Like hand over plug hole on bath when emptying!)best is the rusch belly bag as allows bladder to work more norm

Getting sugars low helps as they like higher sugars to thrive in.

Thanks for the information. I do not know what size of catheter I have. It does not have a valve. It drains constantly.

Most times it's a 16FR you can ask for a size change to see if less blockages nothing to say you have to keep the chnage in as a trial!

As them about a Flip flo valve you don't even need a bag then as thats the end of system then can put anything on end of it like night bags

Thank you for the information.

Hi do you have feel/sensation in the bladder? so ie just lack of control or how/what/which way issues it causes

No, I have no sensation or control. When I used to get catheter blockages, or when my leg bag is full, I begin to sweat heavily rather than pass urine through my urethra. When this happens, muscle contractions causing tightness, especially in the area which would be covered by a waistcoat if I were wearing one, become more severe.

Hi if you had a valve you could open at timed intervals even if have no sensations?

But they lessen blackages by fact of a flow not a dribbleand bladder walls get to be away from drainage holes as it fills then when open there is a big flushing through.

discuss it with your Nurse/People/Team etc

It sounds worth trying. Thank you.

I am not a doctor but I do know that the antibiotic you are taking frequently is a very potent one and my infectious disease doctor has explained to me that the more you take an antibiotic the more likely your body will soon become used to it and you build up a resistance to it and it no longer helps you.

You might ask your doctor about the medication called Hiprex 1 gram twice daily taken with 500 mg vitamin c twice daily and that will also keep your urine clear and you won't have to take those potent antibiotics so often. Ask your doctor if that is something that would be appropriate for you to try, The Hiprex does come in a generic.

For me it has dramatically cut down on infections. It is like magic. If I miss a dose you can start to see the sedimentation starting in the urine and as soon as I get back on the urine turns clear.

Good Luck!

Thank you for the information and for sharing your experiences.

UPDATE 24th July 2019

I have still had no catheter blockage and only a few minor urinary tract infections since the night of 23rd/24th July 2016.

DOSAGE OF NITROFURANTOIN

This has remained similar after initial reduction early in 2017 - as and when there appears to be a UTI. The indicators I use for a possible UTI are 1) sweating not explicable by other causes such as leg bag being full or simply wearing too much clothing and 2) excessive cloudiness (E. coli) or sediment (Staphylococcus saprophyticus) in my catheter. I took 33x50mg. tablets in 2017, 33 in 2018 and 10 so far this year. Since my last post on 24th April 2018 I have taken 50mg Nitrofurantoin on these evenings:

2018

August 17; September 3, 10; October 7,8,16(100mg), 17,29; November 5; December 15,26

2019

January none; February 12,18; March 1(100mg),2; April 6,13; May 24(100mg); June 17

LACK OF BACTERIAL RESISTANCE TO NITROFRANTOIN

The bacteria involved in my UTIs and catheter blockages - E. coli and Staphylococcus saprophyticus, have shown no indication of developing immunity to Nitrofurantoin: it is just as effective in knocking them out as it was three years ago when I started using it to prevent infections and blockages.

CHANGING SUPRAPUBIC CATHETERS HAS OPENED UP THE SITE AND CAUSED UTIs

The bacteria causing UTIs have been entering via catheter site. Early in January 2019 my catheter site became healed with no leakage for the first time that I can remember. I had no infection in January and took no Nitrofurantoin. My catheter was changed at the normal 12-week interval on 5th February. This was followed by two minor infections, soon cleared with Nitrofurantoin. Catheter changes increase leakage around the site and appear to be liable to increase the entry of bacteria with consequent infections. The next change of catheter, due on 30th April, was postponed. On 23rd May, my catheter was left with insufficient slackness. It pulled and began to leak around the site. I had a minor infection on 24th May. As the leakage around the catheter site had started, the reason for not changing my catheter had gone and it was changed on 27th May, a day short of 16 weeks after the previous change. It has not been changed since then. Since the third week in June, my catheter site has been healed. I have had no UTIs.