Really bad smell coming from Suprapubic cath & is really painful to have replaced

[Fahim92]

Hi, I have used a SPC for the last 2 years due to my disability (Spina Bifida) making it impossible to empty my bladder normally. Since the very beginning, it has been excruciatingly painful to have replaced. The nurses will use the numbing gel that comes with it but even then, it feels like a knife is being pulled out of the stoma. I've told the doctors about this and they haven't been able to understand why it hurts and have left it at that. The reason I'm posting about it here today is because, well, I want to know if anyone else has experienced this when having theirs replaced. Every single time I have mine changed, the district nurses that come to change it are so surprised that it hurts the way it does. I've asked them if their other patients who have a SPC complain about the pain, and they've told me that I'm the only one who experiences this. Between changes, I do move the catheter around (slowly spinning it) to stop the skin from healing on to the tube but this hasn't helped with the pain. A lot of times, the pain has been so bad that I've had to have it changed at the hospital because the district nurse wasn't comfortable with changing it when I was more or less screaming from the pain. I'm due another change in around a week and am dreading it. Anyone else experiencing screaming-level pain whilst having theirs changed?


The other reason I'm posting here is to hopefully understand why the cath smells so bad. I do a bladder washout and bag change once a week as I was instructed to by the nurse and a day or two after doing so, the cath and the urine smells like burning plastic.. I drink around 2-3 litres of water a day, but even when I drink more, it still smells just as bad. Upon emptying the bag, the smell is really horrible, most of the time making me want to vomit. The smell of the cath is just as bad. A bladder washout reduces the strength of the smell a bit but it usually returns in a day or so. Having the cath replaced does help for a few days before the smell comes back. I've also noticed that eating 'oily' food or red meat, makes it so much worse. I tend to stay away from that but it still smells really bad. I've spoken to my urologist about it and he didn't have any answers or a way to find one either. I'm at a lost here, the smell is really bad and nothing I can do makes it go away. Does anyone here have any advice for me?



I'd really appreciate any replies.

[Smashms]

sounds like you may be allergic to latex. what type of cath are you using? does it have latex it?

[Fahim92]

I just checked and yes, it does. If I was allergic to it, wouldn't I have reacted to it straight after having it inserted? The smell didn't start until a few weeks after I initially had it put in. The smell also isn't immediately apparent after a change, it comes back a day or 2 after.

[gjnl]

I've never heard of spinning the catheter around "to stop the skin from healing on to the tube." I don't spin my supra pubic catheter and don't have any trouble with the skin healing to the catheter. What does the supra pubic site look like? Is it red, warm to the touch, crusty/scabby, pusy? These symptoms would indicate a supra pubic stoma site infection.

Could the smell be from foods you eat or liquids you drink, i.e., asparagus, curry, salmon, chili peppers, alcohol, brussels sprouts, coffee, garlic, onions and others.

What do you use to do a "bladder washout?"

Have you been tested for bladder stones?

Do you have an infection? Urinalysis (UA)? Culture and Sensitivity (C&S)?

Do you have a closed collection system?

If you don't have a closed collection system, do you clean your leg bag with 10% bleach solution daily? Other cleansing agent?

Do you live in the United States? There is a catheter available in the U.S. (but I don't think elsewhere) called the Poiesis Duette catheter that may help. http://www.poiesismedical.com/products/duette/

All the best,
GJ

[SCI-Nurse]

I suspect he does not live in the USA, due to his reference to a "district nurse" (which we do not have in the USA).

I would look more closely at your diet. Keep a food diary for several weeks and see if you can correlate what you ate to the odor 4-6 hours later.

If you are contaminating your catheter stoma by over-manipulation (spinning the catheter in the stoma) this can also significantly increase your risks for local tissue infection, as well as for a UTI. You could have a yeast infection of the skin around the stoma...these often smell pretty bad.

A closed system is important, if possible. Routine irrigation is not recommended for indwelling catheters, either urethral or suprapubic.

As far as the discomfort, it is likely that you have a condition called allodynia that is related to your spina bifida. This is not real common but it would be consistent with the sensory nerves for your suprapubic area and bladder. Often it is in the area where your sensation changes from normal to impaired. Allodynia is manifest by some type of sensory input that should not be painful causing pain, usually extraordinary pain. Treatment is as with most types of neuropathic pain, which includes TENS, acupuncture, and medications such as Lyrica, Neurontin, etc.

(KLD)

[Fahim92]

I've never heard of spinning the catheter around "to stop the skin from healing on to the tube." I don't spin my supra pubic catheter and don't have any trouble with the skin healing to the catheter. What does the supra pubic site look like? Is it red, warm to the touch, crusty/scabby, pusy? These symptoms would indicate a supra pubic stoma site infection.

Could the smell be from foods you eat or liquids you drink, i.e., asparagus, curry, salmon, chili peppers, alcohol, brussels sprouts, coffee, garlic, onions and others.

What do you use to do a "bladder washout?"

Have you been tested for bladder stones?

Do you have an infection? Urinalysis (UA)? Culture and Sensitivity (C&S)?

Do you have a closed collection system?

If you don't have a closed collection system, do you clean your leg bag with 10% bleach solution daily? Other cleansing agent?

Do you live in the United States? There is a catheter available in the U.S. (but I don't think elsewhere) called the Poiesis Duette catheter that may help. http://www.poiesismedical.com/products/duette/

All the best,
GJ

A doctor at the A&E told me to do that, he said the pain I felt that time whilst having it changed could've been due to the skin inside having formed around the catheter.

The site of the catheter looks okay, it's just a bit moist. I don't feel any pain there unless it's being changed.

Even when I don't really eat much during the day, the urine/catheter smells really bad. I've tested this by eating different foods before changes and it smells the same. The only thing I drink during the day is a lot of water and one weak cup of tea.

The bladder washout is just a saline solution.

I haven't been tested for that, I've got a GP appointment soon so I'll ask about it then.

I don't have an infection, I haven't had one for the last couple of months. I've read that the smelly urine could be attributed to an infection but I don't have any of the other symptoms (smelly urine being one)

I use a night bag which I was told had to be changed once a week, which I do.

And I live in the U.K, I have my catheters etc delivered to me by Great Bear.

[Fahim92]

I suspect he does not live in the USA, due to his reference to a "district nurse" (which we do not have in the USA).

I would look more closely at your diet. Keep a food diary for several weeks and see if you can correlate what you ate to the odor 4-6 hours later.

If you are contaminating your catheter stoma by over-manipulation (spinning the catheter in the stoma) this can also significantly increase your risks for local tissue infection, as well as for a UTI. You could have a yeast infection of the skin around the stoma...these often smell pretty bad.

A closed system is important, if possible. Routine irrigation is not recommended for indwelling catheters, either urethral or suprapubic.

As far as the discomfort, it is likely that you have a condition called allodynia that is related to your spina bifida. This is not real common but it would be consistent with the sensory nerves for your suprapubic area and bladder. Often it is in the area where your sensation changes from normal to impaired. Allodynia is manifest by some type of sensory input that should not be painful causing pain, usually extraordinary pain. Treatment is as with most types of neuropathic pain, which includes TENS, acupuncture, and medications such as Lyrica, Neurontin, etc.

(KLD)

I've kept a food diary before, and changed my diet completely in the 2 months that I thought it was related to my diet. First couple of days, I didn't eat anything that I'd usually eat and the urine smelled exactly the same. The next week, I changed my diet again and still, no change and because of this, I doubt it could be related to that.

I will bring this up when I go in for my appointment. The pain is really bad, especially when having it changed. I've mentioned it to my urologists before and they've sent me away after telling me that I shouldn't be experiencing any pain whatsoever.

I really appreciate the help

[Fahim92]

I've never heard of spinning the catheter around "to stop the skin from healing on to the tube." I don't spin my supra pubic catheter and don't have any trouble with the skin healing to the catheter. What does the supra pubic site look like? Is it red, warm to the touch, crusty/scabby, pusy? These symptoms would indicate a supra pubic stoma site infection.

Could the smell be from foods you eat or liquids you drink, i.e., asparagus, curry, salmon, chili peppers, alcohol, brussels sprouts, coffee, garlic, onions and others.

What do you use to do a "bladder washout?"

Have you been tested for bladder stones?

Do you have an infection? Urinalysis (UA)? Culture and Sensitivity (C&S)?

Do you have a closed collection system?

If you don't have a closed collection system, do you clean your leg bag with 10% bleach solution daily? Other cleansing agent?

Do you live in the United States? There is a catheter available in the U.S. (but I don't think elsewhere) called the Poiesis Duette catheter that may help. http://www.poiesismedical.com/products/duette/

All the best,
GJ

I ended up in the A&E once because of how bad the pain was. The doctor there told me to twist it every now and then to stop the skin from healing on it. As you can probably tell from my main post, it hasn't helped with the pain lol.

The site of the stoma looks okay. Sometimes it's a bit moist. Other than that, it isn't red or leaking.

The bladder washout is a saline solution that I have to connect to my catheter and squeeze into my bladder. I leave it there for a minute and then let the fluid enter back into the bottle.

I haven't been tested for bladder stones, I'll mention that to my GP when I go in for my next appointment.

I haven't had an infection for a few months now. I've read that the smell could be a symptom of an infection, but other than the smell, I don't have any of the other symptoms.

I use a night back which I was told to change once a week, which I do. Sometimes the smell of the urine gets soooo bad that I have to change it before then.

And I live in the UK, I get my supplies from Great Bear Healthcare.

[Smashms]

i would ask to be tested for infection and stones maybe also try a non latex cath as well, as i found i was allergic to latex and this was causing the smell also make sure your drinking enough water as the PH of your urine can also cause odor.as can eating certain foods. there are lists both on here and on the internet that can tell you which ones to stay away from.

[Fahim92]

Okay, I'll make sure to ask my doctor about all of this. I have previously been treated for infections but had other symptoms too which was why I went to see the GP.

I'll also call the suppliers I currently get all of my caths from and ask about a non-latex variant.

Today, I received a call from my district nurse who told me about needing to have my catheter changed (it's nearly been 3 months) she told me that she wasn't comfortable with changing it due to the pain and that I should have it changed at the hospital. Thing is, my doctors and urologists know how bad it is yet they recommend I have it changed at home by a nurse. I don't know what to do. If the pain was bearable, I wouldn't mind having it changed at home.

[Smashms]

ideally your cath should changed every month. this may be why it is so painful when doing it. the longer it is in without changing the harder it is going to be getting it out. when i had mine it was changed every 4-6 weeks and no longer than 6 weeks. in-between.

[Rustyjames]

When I wait longer than 6 weeks I usually have problems. I can't imagine waiting 3 months until a change.

[SCI-Nurse]

Actually, there is no scientific basis for the need to change indwelling catheters monthly. The CDC even says that is not warranted unless the catheter is clogging, and that 6-8 weeks is fine.

Regardless, if the nurse is not comfortable changing the catheter, the NURSE should be calling your physician to let them know this (since that is who would have written the order for the procedure). We do have a number of patients who have their catheters changed only by urology staff.

(KLD)

[Fahim92]

I went in for my appointment & gave a urine sample. The doctor said the smell might be due to an infection but it's not likely due to me not having any other symptoms. She said she'd try to sort out having someone at the hospital change the cath. Not sure if she has though. Will update once I get my urine test results.

[SCI-Nurse]

It might be UTI or just an infection of the skin/tract. If you see a reddened or irritated area you can clean with hydrogen peroxide 1-2 times (but don't over do it as hydrogen peroxide used to often can prevent healing) and put an over the counter antibiotic on it for a couple of days.
CWO