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Primary /Secondary Progressive MS For those living with Progressive MS to discuss treatment options and lifestyle issues.

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  #1  
Old 07-22-2012, 02:28 PM
socrmom socrmom is offline
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Suprapubic catheter

Anyone who has one or anyone who didn't have a good experience, tell me from the beginning how it went.

I am trying to decide and would like your input.
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  #2  
Old 07-23-2012, 02:46 AM
foggyrose foggyrose is offline
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I can't decide either! Will be interested in reading responses too. Good luck with whatever you decide..........FR
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  #3  
Old 07-24-2012, 07:20 AM
kebsa kebsa is offline
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i had a standard urethral catheter and i was happy with that but long term my urologist said i was at risk of urethral erosion and constant leakage so she persuaded me to change to a supra pubic. Remember one thing, if you do not like it it is easily reversible, as the hole closes very quickly when there is no catheter insitu

Basically, i went to a day surgery unit to have it inserted under a very light anaesthetic. I had very little pain from the insertion point and only required a slight absorbant pad for light blood ooze for a day or so.

I am a rather overweight person so the insertion site is slightly lower in me to avoid my spare tire and i am told that this means that the insertion point in the bladder itself has more nerve endings or it just be the way my MS has changed but either way, i get more issues with bladder spasm with the SP, so instead of taking meds when needed i have to take them all the time as a preventitive. I still get spasm at times but it is usually a signal that i have an over full bag, the tube is kinked even that i may need to use my bowels - so while i don't like spasms, what i am left with is useful

the 1st catheter change was done by my urologist about 6 weeks after insertion and was done under sedation as she was also doing a cystoscopy. since then my continence nurse has come to my home to do changes- for me about 6 weeks works best (i know some who leave them for 10 weeks or so) but i produce quite a bit of sediment so the more frequent change helps prevent blockage. Early on when we tried to leave it for longer a stone form around the catheter and prevented its removal so i had to go back to day surg to have the stone crushed - but as long as i stick to the 6 weeks that has not been an issue again

The only issue i have is that changes are quite painful but this is not common at all, it is thought that the low position of the catheter may be part of the issue but basically when they remove the old one it triggers bladder spasms that then make it quite painful to place the new one. We have worked out what makes it work best for me and that is using a catheter designed for supra pubics (releen by coloplast) long term cathters tend to form a cuff when the let the ballon down and this can cause discomfort and the supra pubic catheters are designed to minimise this- there is another type called supracath that is supposed to be really good but here in Australia it is $30 and that is 3 times what i pay, can't afford it so have not tried it.

the other thing that has really helped with the changes is that I take a dose of valium as a muscle relaxant before the nurse arrives and she uses Lignocaine gel instead of plain gel. this means that while still not painfree, it is tolerable and the pain only fleeting- i might add that another thing that makes the changes more troublesome is that i have a problem with spinal damage after crushing some vertabrae in the lumbar area and i cannot lie down with severe pain so i am semi sitting while she changes the catheter which i have no doubt does not help!
after a change i will have some leakage around the tube for a few hrs caused by mild spasm but they soon settle and i just place an aborbent pad under the tube to protect the skin

So overall, i have had less UTI's with the SP, no blocks other than that stone in one of the early ones . No skin infections despite the insertion point being in a skin fold. (AS i produce quite a bit of sediment blockages were not uncommon in a standard catheter but the SP allows a larger one to be used). I had hoped to do my own cahnges and i know people who do and if it were not for the spasm at reinsertion it would be possible.

the only other thing to point out is that once you have a SP cath, if it falls out it is essential to get it replaced Immediately- i said it heals easily if removed and this means real quick, the stoma will start to seal immediately and will be tough to replace in as little as one hour without having to start from scratch! so always keep a spare handy and if you cannot do your own changes you will need to have access to some one who can or consider the ED room. They do not fall out often though but being a manufactured item a balloon failure is possible- not something i have had to deal with in nearly 5yrs

not sure if thats helpful, i am happy to answer questions. basically despite the fact i have more issues with spasms with the SP, that might just be part of MS changes anyway and even if not there is more positive than negative when comparing the 2 types or pads alone. They are also less intrusive during intimate situations.

One last thing, initially i did not wear a bag all the time i used what is called a flip flow valve with acts like a tap - i could not self cath but i could open the tap every 3 or 4 hours and it meant that it i went into a swimming pool etc it was easily concealed too- these days i would be having to open the tap to ften or risk leaking from below so i just use a leg bag (you can use a belly bag in the pool)
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  #4  
Old 07-24-2012, 05:07 PM
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Babs2 Babs2 is offline
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Go for it!

I also started out with your common catheter... through the urethra... but as the above post indicates, you run the risk of stretching the opening and will need to continually increase the size of the catheter...
-it's also a little more difficult to change
- I experienced more bladder infections

For these reasons, my doctor FINALLY talked me into getting a SP.
-Insertion is a breeze because it goes right into your bladder, I have no pain
- I haven't had a bladder infection over a three-years
- feels much more comfortable ... nothing hanging between your legs (my personal "icky")lol

Hope this helps :-)


PEACE,Babs
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  #5  
Old 07-26-2012, 03:14 AM
foggyrose foggyrose is offline
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Kebsa and Babs...........Thank you sooo much for sharing your experiences with the SP with us. It means so much more hearing your personal experience rather than reading about it! Sounds like the risk of infection is minimal if everything is taken care of properly. I'm so sick of smelling of urine and being wet so often.....it's cute with babies, with adults, not so much!

Think that will be my next "project" after I work out my transportation issues. At least having the SP, our confidence level should go up!

Thanks again...............
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  #6  
Old 07-28-2012, 02:11 PM
socrmom socrmom is offline
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A couple of questions. Is it awkward putting on pants? Do you use a foley bag at night?

Sounds like it gives more freedom to travel and just to get out of the house. My appt with my uroligist has been made.

Thank you both for the information.
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  #7  
Old 07-31-2012, 11:54 AM
kebsa kebsa is offline
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I for got to mention that since the SP cath i have only had one UTI and that is about 4 yrs!

as for putting on pants, I have not had to change my clothing choices at all really. I wear a leg bag in the day these days and the tube just feeds down one leg of my underwear - i make sure that the style of underwear is not tight around the leg but ordinary high cut styles are fine. I also look for trousers/slacks with a slightly looser cut around the leg and this means that the bulge from a leg bag is less obvious if it is a bit fuller- these days i wear a larger volume leg bag (750mls) because when i am away from home i have more difficulty emptying it due to mobility problems and a looser fit makes that less noticable- i also use one of the Conveen contour bags that is shaped so that it stays flatter and curves around you leg rather than bulge out (sort of heat welded plastic that forms a series of tubes if that makes sense)

and yes, at night i use a 2 litre night bag that simply attaches to the end of the leg bag. I have also used a night drain bottle that is re usable for longer with correct cleaning and there are spare lids and tubing available rather than disposing of the night bags weekly (they need to be rinsed out daily but changed weekly)

there are many different options for bags and most companies will send you a sample so you can try them and work out what is best for you. some people can manage fine with the "flip flow" valves that act like a tap and then use no bag in the day and simply add a night bag at night _ i did this at first but then i used single use night bags as they connected more closely to the catheter itself and hence a higher level of cleanliness was needed as far as i was concerned but these days i need continual drainage to lessen bladder spasms that i get thesedays but did not back then
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  #8  
Old 08-01-2012, 10:50 PM
Razgo Razgo is offline
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Don't forget to check out another thread on this forum about it http://www.msworld.org/forum/showthread.php?t=109222

My wife has had a normal IDC catheter since 1993. She does not get any UTI infections in years.

you have to take preventative measures like pommegranit juice and cranberry juice and or tablets.

I think being told you run the risk of "stretching the opening and will need to continually increase the size of the catheter" is false information and ignorance on the part of the doctor who said this.

There is no need to increase size of IDC catheter. (unless you are anatomically larger than norman)

If this was the case my wife having IDC catheter for 19 years would suggest she must have a really reall really big catheter in now but she doesn't. size 10fr still works fine, some go smaller to 8fr.

If you go up in size you run the risk of urinary tract shaffing which in turn can lead to pain and infections.

with a supra-pubic catheter you run a higher risk of infection as you now have a stoma to take care of as well and also leakage from the normal ureatha opening as the supra-pubic cath doesn't always drain bottom of the bladder.

I think supra-pubic caths are good for people who cannot have a norman IDC for medical reasons etc... but everyone has their own reasons and experience good or bad.

I have changed over 900 catheters myself.

always reasearch research research
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  #9  
Old 08-02-2012, 07:47 AM
socrmom socrmom is offline
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Thanks Kebsa for all the information.
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  #10  
Old 08-04-2012, 06:25 AM
kebsa kebsa is offline
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Razgo, its not definite that urethral dilatation will occur, it is a risk thats all but i was already having to using a large catheter (18g which is large for a female) because of stone formation - some people produce a sediment that sets like stone purely in response to a long term catheter and i was one of those people and despite drinking large amounts i still had issues and they could not remove one catheter as a stone formed around the outside of the end of the catheter- i had to go to the operating room so she could crush the stone to change the cath! so the large catheter increased the risk and then limited sensation was another risk factor- even so it is still a small risk but the problem is that if it happens it can leave a female with constant leaking of urine even with an SP making pads the only option again. I used to work for a community nursing organisation and we had a good deal of clients who were visitied for regular catheter changes and i can remember at least 2 older women who used to ring because requiring someone to go out and replace the catheter as their had fallen out- both of the women had dilated urethra and could no longer retain a catheter even with a 30CC balloon, if they had any bladder spasms the catheter would pop out complete with an intact 30cc balloon!

it is really not common but as my urologist pointed out if it happens there are very limited options other than urostomy. not trying to scare a person, if you do not need a larger than normal catheter and have normal sensation then the situation is different, we have to be guided by our urologists but now that i have a supra pubic catheter i have a size 26g this eliminates any issues regarding accumulating sediment and debri and stones blocking the catheter- certainly not an option if it were not SP
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  #11  
Old 08-09-2012, 03:43 AM
Razgo Razgo is offline
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Kebsa, they are called bladder stones and are easily for the most part to stop the stones from forming.

My wife used to get these bladder stones all the time until i eventually figured out some basic causes.

I had to teach our local Urologist about this at hospital so they could help other patients.

The bottom line is when your PH balance is low it is more acidic and you will develop bladder stones.

You need to eat more alkaline foods and avoid things that make you more acidic.

There are many things that lower your alkaline that will cause bladder stones like distilled water.

Distilled water is in many things one of which is bottled water.

Bottled water has a base of distilled water and bladder stones can start forming as quickly as a few days of drinking bottled water.

Even liquid medication can cause you to be more acidic quite quickly.

It took me many years to figure out what caused my wifes bladder stones so it wasnít an overnight discovery.

And not very many Urologist are actually aware of what causes bladder stones.

This I why I say you do not need an 18f IDC catheter because of bladder stones you smply need to do things that will stop the bladder stones from forming.

Believe me when I say after changing over 900 catheters since 1993 I have seen and heard I all before.

Anyway take a look at the foods you eat and avoid bottled water and look at alkaline foods and the bladder stones will disappear.

My wife use to get these stones the size of golf balls but she hasnít had any for a couple of years now since I discovered what makes bladder stones form in the bladder.

You will be back to a normal size 8-10f catheter in no time at all
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  #12  
Old 08-09-2012, 09:33 AM
kebsa kebsa is offline
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razgo, i appreciatte your input but having placed over 900 catheters in for your wife makes you an expert about your wifes situation not everyones. after being a nurse for 30 yrs i do know what bladder stones are and urine ph is only one potential cause- there are some indivuals who produce sediment purely and simply because of the placement of a foreign body and the biofilm that forms in the catheter etc!

for me too, if my bladder spasms are worse, i produce more sediment and it settles again once i get the spasms back under control .
part of doing a complete uryinalysis is checking urine PH and which has been done and is in the normal range. it is also important to remember that bladder stones and renal stones can be made of more than one substance, and for many people, having too alkaline urine can cause problems too, stones are usually sent to the lab to see what they are composed of. YOu are correct that medication can be a factor but that may not be something that can be changed depending on the medication and why it is needed.

not trying to blow you off but i too have changed many catheters in my life, just not for only one person and i worked as an RN for an organisation that provided ongoing community support for people with permanent catheters living in the community for around 12 yrs as well as 18 yrs of acute hospital experience, i also have a very knowledgable urologist that i trust- its not alway simply a case of making your urine more alkaline for some it can be quite the opposite and infact if you take a look at a product called OPtiflo, it is a solution made by BARD medical supplies, a major player in the area of urological supplies, that is basically a Citric acid solution, it is used by people like me to prevent and clear crystal and sediment formation leading to blockages but unfortunately for me it is not availalbe here in australia, despite being commonly used in UK-

i only mentioned my situation when you said that potential urethral stretching was not a valid reason for a supra pubic- i did not actually use the term stretching, i said dilatation and it is true that it is not inevitable just from multiple changes over time. the dilation has other factors including sensory changes in the area etc and it certainly is not a foregone conclusion that it will occur ( i have only every seen it a couple of times) but urologist has been frustrated at being sent patients after it has occured, sadly once it happens it cannot be reversed and it can get to the point as i have seen where a person cannot retain even the the 30cc balloon- even when this lady had a catheter in place with the balloon inflated, she leaked badly continuously. Adult diapers are the only option when this happens-aside from all this, if a permanent catheter is required the SP is less of an issue in during intimacy- i can't speak for a bloke, i know many do just fold them over but having a urethral catheter in place for a female during intimate encouters is pretty uncomfortable!
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  #13  
Old 08-09-2012, 02:41 PM
Razgo Razgo is offline
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yes we all have our own experiences and whilst mine is with my wife all the doctors and Urologists and nurses have passed on all my info to their patients with great success so far having many patients now resolving all their bladder stone issues and not needing larger IDC catheters.

Its all about spreading good information which is what i have done here that will help hundreds of people that were told they needed a supra pubic cath or larger cath only to find out that is not the case in general because of lack of knowledge in this particular area.

Of course there will be a minority of people that have further complicated medical conditions that require a supra cath or larger cath but in general it's simply not needed when diet and PH balance is looked at and avoid products that cause your PH to be more acidic or at least balance it with foods that increase PH levels back up to 7.4

In fact one of the simplest method i found was a little lemon juice in water to stop bladder stones forming. I do this for my wife when bottled water is taken especially in hospital because our hospital only use bottled water.

my wifes fantastic results of stopping bladder stones were a result of the 24/7 nursing care i give and now hundreds of people so far have benefited from my findings in the medical and nursing area so far.

so the more people that know about this the better
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  #14  
Old 08-09-2012, 03:10 PM
Razgo Razgo is offline
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I forgot to mention i give my wife lemon water (fresh lemon juice squeeze) which i know is citric acid but it balances PH and stops the bladder stones from forming on a weekly bases.

even though the bladder stones have stopped forming now they can easily come back during ill health which is when our PH drops a lot too.

I do not measure my wife's PH balance to try and be exact or anything I let her body tell me whats going on and make adjustments accordingly.

So it's not like you have to go and get PH strips and test yourself etc etc to resolve this issue.

Just do a few simply steps and wait for the changes to occur.

And those bladder stones can role around in the bladder for up to a couple of months before they painfully come out so don't think it hasnt worked if a week later another stone passes through
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  #15  
Old 08-10-2012, 03:34 PM
anneth121 anneth121 is online now
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I have phosphate crystals in my bladder. The doc said is was like looking into a snow globe.

Anyway, said put a little vinegar in some water to change the ph too.
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