21 replies to this topic

[Smileyblue]

This is really gross! Not my idea of something to discuss in public, but I really need advice as my appointment with the urologist is only on Friday..

I have an infection yet again! I've had to go onto a Foley catheter as the spasms won't allow me "access" to self-cath.. I have noticed a really bad odour and discharge, and thinking that it was vaginal, sought treatment.. However, when changing the catheter, it became clear that this discharge is coming from my bladder!

Does anyone know of or have any experience with this happening or am I just disgusting all on my own? What should I do? It doesn't seem right to just wait for my appointment..

[mahmutkaplan]

Smileyblue, on 04 August 2010 - 08:50 AM, said:

This is really gross! Not my idea of something to discuss in public, but I really need advice as my appointment with the urologist is only on Friday..

I have an infection yet again! I've had to go onto a Foley catheter as the spasms won't allow me "access" to self-cath.. I have noticed a really bad odour and discharge, and thinking that it was vaginal, sought treatment.. However, when changing the catheter, it became clear that this discharge is coming from my bladder!

Does anyone know of or have any experience with this happening or am I just disgusting all on my own? What should I do? It doesn't seem right to just wait for my appointment..

Do you take pill related to infection problem. You can take pill that your doctor gave before. Maybe it is vaginal problem. Only changing catheter is not enough because of your having spasms. Maybe you call your doctor who advice what to do. I hope your problem solve.

[jenny407]

Dear Smiley,

I'm sorry to hear of your problem (neither gross nor disgusting, just very human and very annoying!). I'm not at all sure as to what should be done. Different ABs, perhaps?

Is it possible for you to go to your urologist before Friday? (As an emergency case?)

If not, drink lots, keep warm, ask in a drug store if they have anything you can take in between. (In Germany, there are pills like aqualibra, for which you don't need a prescription, just for the meantime.)

Good luck to you!
Jenny

[Smileyblue]

Thank you both for replying..

I was taking antibiotics but the course finished, so no more.. Which is why I thought it may be a yeast infection as I'm prone to getting those on antibiotics, even though I take probiotics too..

I can't even say that the Zapper was working/not working as the battery died and I haven't had an opportunity to replace it.. (my car's engine seized so Mummy's without wheels, and my fiance's working terrible shifts)

I'm so tired of these darn infections and antibiotics ten days out of every month!

Arghhhhhhhh!

That feels better.. ;-)

Since I'm on open drainage and don't have to worry about "leaks" between cathing, I'm drinking PLENTY.. Lol.. I pee about 6 to 8 litres per day..

Unfortunately the urologist can't see me earlier, I tried.. Only reason he can see me Friday is because of a cancellation.. I will phone the pharmacy and ask about delivering the aqualibra or similar, thanks Jenny.. ;-)

[jenny407]

Very good luck, smiley! It's very annoying stuff.

[edlee]

I've had a similar problem, since going with the foley. Nasty, huh? My problem is getting the urologist to understand that it's not in the bladder but in the urethra. Sometimes both.

I managed to get one( the group I use has two urologists and about a half dozen PAs. Never sure who you'll get on any given day) to actually take a swab, and ended up with two separate perscriptions. One for the Ecoli and one for something else.

Cleared me up for about four months,, which is about the longest I've ever gone without SOME bug up there.

Hope you have better luck than I have. I have one now,, but was told not to come in unless I get a fever of over 102F. Guess I'll wait it out.
ed

[Smileyblue]

Hi Ed.. Thanks for your post.. I'll make sure to insist on a swab..

I guess I'm fortunate not to get the fevers associated with the infections.. So far it has always only been wilder spasms and worse pain..

May we both find remedy soon.. ;-)

[davjed]

Once you get a culture and sensitivity for the bacteria you have you can ask for an additional prescription to have on hand the next time you get a UTI. I always have a supply of cipro on hand. If I notice a putrid smell (you get to where you recognize it) I start the AB right away. Having to wait to see a urologist makes one even sicker.

[mahmutkaplan]

Cipro is useful for infection.I took it before. Smiley, I hope you will have a remedy to lessen spasms and pain.

[Smileyblue]

Thanks guys.. ;-) I really appreciate all the advice and support I'm getting!

[pinkcloud]

Hi Smiley Blue

I agree with the others, I feel too that its not distusting to talk about stuff like this - hey most of us are in the same position.

I get awful bladder spasms too. Although incomplete I cant feel when I need to go toilet. I just get pain. And now I am on Pregablin, I get spasms before I need to go.

I understand the pain of your spasms.They are awful. On this website there is some info about this kind of stuff, in the 'bladder management'part.
It helped me so much and I hope it does you too.

Cranberry juice is good for infections, my urologist told me.

I wish you all the best and hope that it clears up soon

[pinkcloud]

Hi Smiley Blue

I agree with the others, I feel too that its not distusting to talk about stuff like this - hey most of us are in the same position.

I get awful bladder spasms too. Although incomplete I cant feel when I need to go toilet. I just get pain. And now I am on Pregablin, I get spasms before I need to go.

I understand the pain of your spasms.They are awful. On this website there is some info about this kind of stuff, in the 'bladder management'part.
It helped me so much and I hope it does you too.

Cranberry juice is good for infections, my urologist told me.

I wish you all the best and hope that it clears up soon

[Smileyblue]

OK, I went to the urologist eventually..

No tests, no swabs, no medication, no nothing! He just booked me for a uroscopy on the 18th..

So now we "hurry up and wait".. The frustration is killing me!

At least one good thing came of it, he agreed that perhaps a Mitrofanoff procedure might be the best solution for me, and is willing to look into it some more..

Once again, thanks to all for your support.. ;-)

Renée

[Gleno]

Smileyblue, on 06 August 2010 - 01:33 PM, said:

OK, I went to the urologist eventually..

No tests, no swabs, no medication, no nothing! He just booked me for a uroscopy on the 18th..

So now we "hurry up and wait".. The frustration is killing me!

At least one good thing came of it, he agreed that perhaps a Mitrofanoff procedure might be the best solution for me, and is willing to look into it some more..

Once again, thanks to all for your support.. ;-)

Renée

Hi Smiley

A fellow South African I see--AND one who lives not too far from me
I've been in a chair for 13 yrs and believe me have had my fair share of infections--bladder and other. I never thought about it--a woman having the same problems but come to think of it, it stands to reason
I've been using a sialastic foley catherter for ages now and find it far better than inserting and removing one constantly--also less infections as I work in the engineering game and always have dirty hands. Hygiene is a lot easier with the foley. Also through experience found that the sialastic silicone one is far better than the normal ones ( less infection and they last up to 3 months)
Ok--I'm not a doctor but do have a lot of experience-lol (just wanted to add that ;)

Can I ask you a few questions first if you don't mind?

Firstly--are you a state patient or go to a private doctor?-The reason I'm asking this is because of the limitations on medication that are available from the state.

Secondly--are you on any form of meds that reduce your spasms and pain? (you should be on Baclofen and Neurontin and perhaps Tramadol for the pain)

Thirdly (more a statement here)--that urologist you went to is a dork!--He could have at least given you a strong antibiotic until you went for the tests (macrodentin is a good one--ste state hospitals don't have that tho-it's expensive

I've experienced the same as what you have--the smell and the infection in the urethra--unfortunately that's part of life for us--the agitation from the catherter in the urethra. The intermittent catherter of course giving much more agitation than the sialastic due to the constant insertion.

It's a difficult situation you have there because if you have an infection in the urethra then the constant insertion of an intermittent catherter will transfer the infection to your bladder and visa-versa--so firstly I would suggest that if you're not using a foley catherter now, speak to the doc about starting to use them.
What's easy about them is they come supplied with a plug. In my case when I feel my bladder is full I have a pipe that I made up from from normal fish tank air piping that's pushed into the back of one of those plugs (cut off the front to make a hole right through)I go to the toilet, remove the plug from my foley and put the extention in--an extended catherter in other words.Very easy for me :)For a woman it would be much easier as well--no need to transfer to the toilet. I just have to watch out for urine dripping onto my clothes--normally put toilet paper under where I exchange plugs.

Going back to the infection in your urethra tho--no amount of water drunk will remove that--only antibiotics. Drinking water will help to not get the infections yes but once you have it that's it--difficult to get rid of.
With bladder infection itself it's very possible that a person might have bladder stones from the calcium build-up and only once those are removed will things improve ( I've had those too)

Anyways--I hope some of this helps--also for the others who read this. Feel free to contact me anytime

Oh yeah--just want to add that I haven't used a bag in years because of all the little attachments and gizmo's I've made up and don't need to wake up to empty my bladder either.
If anyone here needs some advice on how--I'm here

Take care now!
Glen

FIGHT BLADDER INFECTION! >>>

[Gleno]

Just want to add that any kind of alkalizer--such as Citris Soda helps to get rid of the smell--after all it's mainly the acid that causes that pungent smell.
With a urethra infection unfortunately there's not much a person can do besides hygiene. The discharge is basically pus from the infection---

Crude I know-- but no other way to put it really

[Gleno]

LOL--something else to add--

What I have found is that by removing the foley catherter and basically giving your urethra a rest for a while-for as long as possible also helps;--I often do intermittent catherterization for a short while too to help--like over a weekend and then insert the foley again---

[Smileyblue]

Whew! lots of information and questions, Gleno! Thanks for taking the time to type all that!

Due to the short term memory loss, I'm gonna scroll up and down to reply, so if I miss something...

I'm both, state and private.. I choose to see private doctors when I don't get any joy from the state doctors.. My medication is mostly state supplied, but I do have to purchase some out of my own pocket as they're not on state hospital list..

I'm on Baclofen, Valium, Oxybutinan, Myprodol, Voltaren, and a few other over the counter stuff..

I have been on numerous macrodantin courses, and yes, it works great, until the course is finished.. Sadly antibiotics also cause fungal infections, so I prefer not to take them unless I absolutely HAVE to..

I found a problem with the silasic catheters in that the longer they stay in there, the worse the infections.. So now I use silicon or silicon coated and change it every week.. Self-cath became too hard to do with the spasms getting worse by the day.. Which is why I'm quite excited that this Urologist also agreed that the Mitrofanoff might be a good option for me..

Anyway, I'm having the scope on the 18th, so I'll know more about what's going on in there then..

Thanks again for all your replies..

[davjed]

I use the generic of Macrodantin (nitrofurantoin) as a prophylactic against infection. I've taken 100mg daily for years. The generic brand is relatively inexpensive here. I usually get one or two infections a year which I self treat with Cipro.

[Smileyblue]

Thanks for your reply.. ;-) Although it's not an answer for me, I'm sure it'll help someone else reading this thread..

It was recommended at one stage that I go on Macrodantin as a prophylactic, but as a woman being prone to the fungal infections that the antibiotics cause (even when on probiotics), it was decided that was not an answer for me.. A fungal infection spread into the bladder is so much harder to get rid of than a bacterial one..

[Millard]

Smileyblue, on 10 August 2010 - 07:50 AM, said:

Thanks for your reply.. ;-) Although it's not an answer for me, I'm sure it'll help someone else reading this thread..

It was recommended at one stage that I go on Macrodantin as a prophylactic, but as a woman being prone to the fungal infections that the antibiotics cause (even when on probiotics), it was decided that was not an answer for me.. A fungal infection spread into the bladder is so much harder to get rid of than a bacterial one..

If you would go to  http://www.oculusis.com and read, this may be an answer to your problem.  I know this is available in Europe but don't know about SA.  It will kill fungus and has zero side effects, unless you're allergic to water.


It also works wonders on healing pressure sores.

Good luck.

[Gleno]

That's an interesting article there Millard--I want to look into it and see if Microcyn is available in SA. ( mind you-if it were it would probably be a hang of a price )

Thanks for the info--

Ok--back to you Smiley

I was just thinking--looking at those meds the doc has prescribed for you. The Oxybutinan I can understand as well as the Baclofen. The rest doesn't make sense to me at all--
I'm a pain clinic patient at Greys hospital--the doc in charge of it being one who has traveled all over the world studying methods to control pain.
Down in Richards Bay you probably don't have a pain clinic nearby or anyone who specializes in SCI's so I don't know who you've been to.
Anyway--the voltaren for one is mainly prescribes for people with muscular pains not nerve related like we have---it's odd that you're using that.

Quote-"This medicine can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use Voltaren."

Myprodol is useless-a mild to medium over-the-counter pain killer and Valium--hoowee!--dangerous stuff that---especially for long term use--here's what they say about it--
"Valium is used in the management of anxiety disorders. It may also be used to treat agitation, shakiness, and hallucinations during alcohol withdrawal and to relieve certain types of muscle pain."

If you're anything like me--ok--I have an incomplete lesion and feel everything--altho different like hot feels cold etc and suffer from chronic pain they should have put you onto something similar to what I'm on--
Baclofen--ok--you're on that--(max dosage is 100mg daily I believe)
Neurontin----amazing stuff--google it and see
Tramadol, Doxyfene(very expensive tho and the state hospitals don't supply it anymore)or Lycra--all for pain. Either or mind you--lol
Rivotril--which does basically the same as Neurontin but I only take that mornings and evenings
Amitriptylene--this is basically a 3 in 1 drug--helps with depression, pain and sleeping ( I don't take that one much tho coz I can't get up in the mornings--lol)

I find too that if ANYTHING happens--may it be infection, sadness, excitement etc it increases my spasms--or starts them so in your case (besides other things maybe) you probably find that if you had no infection you'll have far fewer spasms.

Anyway--just thought I'd give you some more input from my side
Let's just wait and see what your Uroscopy says-----

[Smileyblue]

Hi Millard.. I saw the link on the other thread (sounds really great), but unfortunately their site is not blackberry friendly.. Lol.. I will definitely check it out the next time I'm anywhere near a pc..

Gleno, the Voltaren is for my joint pains I think.. Wrists, elbows, and shoulders.. The Myprodol is for the headaches/migraines.. And the recently added Valium is supposed to supplement the Baclofen for the REALLY bad spasm days, although I try not to use it.. We haven't yet found anything that works for the body pains, although we have tried quite a few different drugs.. ;-) Thanks again for your always welcome input..