[Avocado Baby]

Hi everyone,

I've been self catheterising since I was about 5 but the last few years I've been getting more and more UTI's. Not only does this make me feel crap, I'm worried about the effect it's having on my kidneys and the long term consequences of this!

I do find it difficult to keep everything clean, which I'm sure is causing alot of the problems and then there's always the problem of not being able to find somewhere to go when I need to cath, which leads to accidents

I'm noit keen on the idea of any surgical solutions to the problem cos I've spent enough time in hospital recently and just want to get on with my life.

Any ideas please?

Thanks

[kewlcatkez]

Pink Ali, on Oct 26 2007, 02:21 PM, said:

I do find it difficult to keep everything clean, which I'm sure is causing alot of the problems and then there's always the problem of not being able to find somewhere to go when I need to cath, which leads to accidents

I'm noit keen on the idea of any surgical solutions EDIT

Hi,

I have no simple answer for you I am afraid, but want to try and tackle a few of the factors you mentioned above.

I know that insurance is probably a problem as I gather that u live in the US. However, I was wondering if you could get a dr to support you in saying that single use catheters would perhaps be a better option since you wouldn't have to worry about the cleaning. Plus some have a'no touch' system which means even less chance of contamination.

Being female makes it awkward since we have our urethra so close to our other 'equipment' and so the chances of infection increase. Of course there ios a school of thought which suggests that 'sterile' caths are 'too clean' ..erm..But its probably worth a try.

Also if you seem to be needing to cath more frequently than before perhaps a urology appointment ( as outpationet so you avoid the hospital stay!) is in order? Maybe they will do Urodynamics and compare with any you may have had in the past. Perhspa they would suggest medication ( Anticholinergics ) to help with any 'wetting' between caths, esp if your bladder has gotten smaller.


Rarely some people will be prescribed antidiuretic hormone if they have very excessive urine production. This will opbviously reduce accidents if excess urine is the cause for them.


Another thought is do you drink a lot of coffee and caffeine based drinks? As they may know they have diuretic effect on the bladder. This is also true of certain medications ( even if they are not overtly 'water tablets'). Thiss can have a big effect on keeping dry etc. Sorry if this is stuff you know really well, but as a RN its sort of habit to go on!

I suppose ultimately the only absolute, barring full bladder control is ( for a female anyway) getting a long term Foley catheter, but the positives must ( like always) outweigh the risks, since as I am sure you are aware ( information is present on many threads here) your bladder can shrink very quickly, the risk of infection can be multiplied due to infection having a constant "line" to the bladder and some have even had pressure sores ( I have nursed some) from the tubing. Of course there are many positive points such as not being tied to cathing and being able to go out and get on with life without having to find a accessible toilet and the like.


Oh and of course a lot of what can be done will depend upon if you have a Reflex bladder or a flaccid one ( not sure from your signiture how high your injury is).


anyway, I just wanted to throw these thoughts into the mix, like I said I haven't got any real answers for you, but perhaps another perspective will help somehow.

Take care and let us know how you go on.

[kewlcatkez]

oh and also thought that I would add that IF Lyrica is anything like Topamax ( Topirimate, same group as Gabapentin) it can lead to an increase risk of calcification ( stones). This is especially true if you are reducing intake to prevent accidents. May be worth seeing if you have any stones appearing??

Just a thought, and I have no real experience with Lyrica so I really may be totally wrong...but similar type so..

Good luck

[Texaswheelz]

kewlcatkez, on Oct 26 2007, 09:07 AM, said:

However, I was wondering if you could get a dr to support you in saying that single use catheters would perhaps be a better option since you wouldn't have to worry about the cleaning. Plus some have a'no touch' system which means even less chance of contamination.

The no touch cath's are great, it gives you a place to always go and is about as clean as they get. If there is anyway you can get insurance to pay for them then I would give them a try. You use it just like a intermittent cath, yet it is prelubed and your hands never touch the cath.

Here is the apogee one, and the hollister one. Hollister makes both but apogee is a bit cheaper and the hollister one includes the gloves and sterile wipes and such in each pack. Of course each one is 1 time use, but you can really be anywhere and use these, be clean and sterile and then throw the whole thing away.

I know in the US, all it takes is 2 documented UTI's a year for Medicare/medicaid and most insurances to pay for these instead of the normal 1 time use cath's.

[Avocado Baby]

kewlcatkez, on Oct 26 2007, 03:07 PM, said:

I know that insurance is probably a problem as I gather that u live in the US.

I live in the UK. I don't think insurance would even be an option as you have to have no pre-known medical conditions...or something. I may be able to get them on the NHS though.


Another thought is do you drink a lot of coffee and caffeine based drinks? As they may know they have diuretic effect on the bladder.

Er...yeah I know I drink way too many caffeine based drinks and I really need to cut down! I have no will power! I must try harder!



Oh and of course a lot of what can be done will depend upon if you have a Reflex bladder or a flaccid one ( not sure from your signiture how high your injury is).

I have Spina Bifida so it's not classed the same as an SCI. My lesion is lower lumbar but I have no function from around my ribcage. I'm not sure what a reflex bladder is. I'm ot good on technicalities.

Texaswheelz, on Oct 26 2007, 04:55 PM, said:

kewlcatkez, on Oct 26 2007, 09:07 AM, said:

However, I was wondering if you could get a dr to support you in saying that single use catheters would perhaps be a better option since you wouldn't have to worry about the cleaning. Plus some have a'no touch' system which means even less chance of contamination.

The no touch cath's are great, it gives you a place to always go and is about as clean as they get. If there is anyway you can get insurance to pay for them then I would give them a try. You use it just like a intermittent cath, yet it is prelubed and your hands never touch the cath.

Here is the apogee one, and the hollister one. Hollister makes both but apogee is a bit cheaper and the hollister one includes the gloves and sterile wipes and such in each pack. Of course each one is 1 time use, but you can really be anywhere and use these, be clean and sterile and then throw the whole thing away.

I know in the US, all it takes is 2 documented UTI's a year for Medicare/medicaid and most insurances to pay for these instead of the normal 1 time use cath's.

I'm going to see my doctor on Wednesday and will ask her then.

Thanks for all your help

[kewlcatkez]

Pink Ali, on Oct 26 2007, 10:55 PM, said:

I have Spina Bifida so it's not classed the same as an SCI. My lesion is lower lumbar but I have no function from around my ribcage. I'm not sure what a reflex bladder is. I'm ot good on technicalities.

Hi again,

sorry if i sounded like I swallowed a dictionary! habits die hard..

anyway, I found some definitions of flaccid and reflex bladder which are in plain english, they can be found (click)HERE :

Quote

Flaccid bladder [edit to add usually affects those t12/L1 and below]
Where the nerves between the bladder and the spinal cord have been damaged, the bladder lacks reflex activity, and cannot be trained to empty.

and

Quote

Automatic bladder [edit aka "reflex bladder", usually affects t12 and above]
Where the nerve impulses between the bladder and the spinal cord remain intact and the bladder can be trained to empty by reflex (spastic) action.

of course there is always some cross over due to anatomical differences, person to person etc..


Hope this helps explain. The link i posted earlier has a whole section on bladder management, perhaps somethin there will be of use. Plus it explains what the above mean in terms of bladder management choices.


oh also I see that you are too ( re being here in the uk!)
YES they do offer these caths on the NHS. First off, to try them out I got myslef some from the company by going to their web page and asking for a sample. They sent me a box via courier! I now use a combination of Speedicaths ( mainly when out) and the 'no touch' type @ home.

As for the Cofee/tea/coke etc thing, don't be too hard on yerself, we all have to indulge in something! Just mentioned it as its worth considering perhaps limiting the number of Caffeinated cups you drink and drink decaf/caffeine free pop the rest of the time??..lol I know it isn't the same but..well just an idea!

take care,

k


ps, my 'no touch' type caths are called "Flocath quick" and are by RUSCHcare. (Hydrophillic coated catheter with 0.9% saline). The use by date was good for about 4 years too!

This post has been edited by kewlcatkez: 26 October 2007 - 11:24 PM

[nomis]

I was having troubles some years ago with repeated infections as an intermitent catheter user. Although it's not fashionable today, I finally began to take a low does of antibiotic daily and have stayed on it ever since without having one infection. That began about six years ago.

[Avocado Baby]

Thanks.

Mine will be a reflex bladder then. My friend's dad, who is a GP also suggested taking anti-biotics as a matter of course. It's another thing I may suggest to my doctor although my body has de-sensitised to some of them due to having had a lot over 26 years.

Just want to say a huge thanks to the Apparelyzed Admins (is it Simon?) This site is so helpful!

[Shaunbbassin]

I had some of the problems mentioned in this topic. Was having to cath more and more often due to wetness and linking and it wasnt seeming to help. I then wore a foley cathater for a little while and my bladder shrank to the point where I coudlnt function without one without surgery. I had the fairly extensive surgery done about 2 months ago and it is unreal. They take a piece of the small intestine and attach it to the bladder making it much bigger. They then took out my appendix and attatched it to my belly button and attatched the other end to my bladder. The surgery is called a bladder augmentaion and the belly button part is called a stoma. the first month was pretty rough but once it got back I am now back to work and functioning better than i was in the past. I now cath through my belly button which is much cleaner than down below, plus the bladder holds much more, making it able to cath only ever 4-6 hours, plus no leaking down below, I mean NONE. I also had an ACE prodedure done while he was in there. He basically took the other half of my appendix and attached it to the end of my colon on my left side and made a small hole or stoma just to the left of my belly button. Not sure what the ACE stands for but it is basically a reverse enama. Every 2 or 3 days I hang an bucket with soapy water and run it through a small cathater i insert into the stoma. Within 10-15 mintus I have a BM and then I am done.It took about 2 months to get it regulated but now it works well. The downside it that sometimes gas is passed around this stoma and ocasianlly a little seapage around it but i keepa smally piece of a 4x4 taped over it under my shirt and its not a problem. My doctor was Charles Secrest in Jackson MS. He does more of these operations than anyone in the SE USA. If your problems get too bad I would recommend you asking your doctors about it.

This post has been edited by Shaunbbassin: 31 October 2007 - 03:03 PM

[Avocado Baby]

Hi there,

Thanks for all the information. I went to see my dr today and she said that she wants me to send in urine samples every few weeks over 3 months and she'll see if there's any pattern. Then they can look into prescribing me preventitive medicine.


I've heard of the Foley catheter and it's something I may look into in the future. Right now, I'm really not up for more surgery. I had spinal surery at the beginning of the year, stayed in hodpital for 4 months and have had to move into a flat due to loss of mobility. Life's been completely mad and I'm just enjoying being settled again.

I've heard of the ACE Procedure. In fsct, my consultant signed me up for it when it was brand new (without my consent) but it's just as well we found out cos I don't have my appendix anymore! They took it out when I was a baby. Since I was 11, I've used a MiIC-KEY which is similar to what you've described. Its a little button shaped thing with a tube attached to my bowel and I just flush water through it to make my bowel moves. That works very well and has greatly reuced the number of accidents I have. Unfortunately it leaks quite alot. I put a Melolin pad over it but sometimes it doesn't help much. I'm going to see someone about it at the end of November but I usually get blank looks when I ask most drs about it. It's not a very common thing to have done apparently...especially in adults.

Again, thanks for your help.
I'll let you know how I get on.

[Avocado Baby]

I've been trawling through posts looking for help and ideas. I seem to have colonised bacteria in my bladder and I get a UTI back whenever I'm not on antibiotics. I'm thinking of asking the urologist about a urethrostomy. I changed my catheters to Lofric quite a while ago. I know it's my own fault for not looking after myself properly, but I really am struggling to cope with these infections!

[Tetracyclone]

Avocado Baby,

Sorry you are still struggling. The first order of treatment is to improve your cleaning ritual. Look into getting something like this:

http://www.ecplaza.n...onic_bidet.html

I know you are discouraged and this is actually the biggest problem. You can do a good job of cleaning if you make it your first priority in life... until it becomes habit. You can....... you can............... you can!

love ya dear.

[Avocado Baby]

Thanks,

Yeah, I am discouraged. Just cos I feel ill so much of the time and I have no energy. I've looked in to getting one of these. I asked my OT and they said I'm on the waiting list for a review.

[Tetracyclone]

Avocado Baby, on 02 October 2010 - 06:05 PM, said:

Thanks,

Yeah, I am discouraged. Just cos I feel ill so much of the time and I have no energy. I've looked in to getting one of these. I asked my OT and they said I'm on the waiting list for a review.

Tell your OT to kick the reviewers butts because if you don't get relief soon you are in line to cost the NHS a LOT more money with hospitalization, operation, whatever.

[Avocado Baby]

Tetracyclone, on 02 October 2010 - 10:49 PM, said:

Tell your OT to kick the reviewers butts because if you don't get relief soon you are in line to cost the NHS a LOT more money with hospitalization, operation, whatever.

I'll do my best! You know what the NHS is like!!

[partygirl]

avocado baby, i am very happy with my system. i have a suprapubic catheter with a 'flip flo' valve attached. i release the valve every couple of hours to empty my bladder. it's really simple.

i never have a UTI and i have the catheter changed once a month by a continence nurse at the local hospital. the catheter is a foley.

at night i attach to a night bag so i get uninterrupted sleep. my bladder capacity stays good. i don't have to worry about sterile technique when i go to the toilet.

i used to do self cathing and it was a pain in the ass, i hated it.