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Escaping the Catheter?

User
Posted 20 Dec 2019 at 19:18

Hi everyone. This is a partial followup to my last thread but centers around Catheters, if anyone has any expertise or has been through similar, be very much appreciated, as I feel pretty lost, even on the back of my own research. 

My Dad 72, was diagnosed with an aggressive but localised prostate cancer. He had various courses of high strength radiotherapy and in the following weeks, eventually got urinal retention. No medication was given to help prevent inflammation of the uretha (if any exists?)  just the advice to drink lots of water, which he did. And cranberry of course!

So living with his Indwelling Catheter became a ritual of painful of sometimes weekly callouts to nurses in the middle of the night to either replace the catheter due to blockage, or bladder washes. Sometimes it would be a painful trip to A&E as the blockage produced so much pain.

Eventually, the balloon actually burst and the catheter came out! (which i realise does happen sometimes) This encouraged my Dad to try and urinate of his own accord. He struggled at first but eventually controlled it and was urinating frequently, without catheter, in large amounts, over the course of many weeks. He did not get his trial without catheter however, nor a bladder scan and I feel this was a missed opportunity in hindsight. But still, light on the horizon, the ability to urinate without a catheter was bliss to my father. No more anxiety of how to sleep through the night, no worry about blockages.

My fathers followup interview arrived and he was deemed a success story in getting his cancer in remission.  We were overjoyed.

However....

Out of the blue, my father started getting more and more sediment in his urine. White goop. Some blood.  He once again was rushed by ambulance to hospital with a suspected blockage. Now he lies in hospital with a suspected urinary tract infection (his first it seems) and a new catheter to deal with.

My two queries are as follows: 

- From my own research, Inflammation of the urethra seems to be the main cause of blockages, or a urethal stricture. Is this caused by the remanents of radiation in the body? Even after months? Can you combat inflammation of the uretha with medication? When does surgery become an option? (It's been very hard to get an appointment with the follow up team and I don't think he's had a proper conversation with a urologist once) The GP tends to just perscribe painkillers and say everything is perfectly normal.

- Does anyone have a catheter success story to share? Whilst they solve a problem, it seems a temporary solution, possibly even making his Urethra worse, (On insertion and removal) No matter how much water he drinks, or caffeine he avoids, or cranberry he downs, the sediment seems to win in the end. Is their an end to this sediment and is there a life without a catheter to be had?

I really appreciate anyone taking the time to read through my, admittedly quite tired, rant. 

 

 

User
Posted 20 Dec 2019 at 20:28

DJB

My urethral stricture was the result of surgery, some men develop urethral strictures unconnected to surgery or prostate issues. I have had various medications to help with spasms but do not know if there anti inflammatory drugs that target urethral strictures. I think some of the medications are designed to increase flow but probably by relaxing the urethra, prostate or bladder ( guys ????).  I had my  SPC inserted as insurance in case the RT closed the urethra. Unfortunately we are not allowed to post pictures on this site but the amount of blood clots and debris being passed post op was horrendous. My bladder capacity is now only around 50ml, it is rare for the RT to cause so much damage but it probably explains why urology were blaming RT and Radiology were blaming surgery. 

For me surgery for the stricture came when the flow started to slow , on one occasion I got down to 0.5 ml/ sec, most men will do 20ml/sec.

I still get a small amount of sediment but rarely get blockages. Your Dad's balloon burst could be a result of a kidney stones. I drink 4/5 cups of caffeinated black coffee a day and ironically it makes my flow better than on days when drinking more water than coffee. 

I have had my SPC for three years and although it is a faff it works for me. SPC changes can be uncomfortable and some insist on having them changed under GA, but normally the discomfort only lasts a few seconds.  Last couple of days have been a fiasco due to incorrect supplies being sent.

If you have any more questions, then ask away.

Thanks Chris

Edited by member 20 Dec 2019 at 20:39  | Reason: Not specified

User
Posted 20 Dec 2019 at 21:55

Hi mate, thanks for the story.

Can i ask, did you ever get a choice in catheter? I'm guessing the SPC is more of a permanent solution. Do you intend to use the catheter permanently? How long did Debris last after your op? (Radiotherapy for that matter seems to produce debris too)

Do you use any self maintenance technique? I'm curious how the Catheters compare in terms of getting blocked (seems the Indwelling block alot). 

It can't be right surely that every so often you have to call an emergency nurse or check yourself into A&E to get the catheter removed/bladder wash? Unfortunately that has been my Dads main experience with the Indwelling. He is frightened of the pain and the potential of any blockages and can barely sleep using it.

I also notice you're quite specific about your flow measurements, my Dad has yet to have any testing in this regard. I suspect it would be useful to see what his capacity and flow was, without using a catheter, had he gone through with the trial.

 

Hope you're doing well!

User
Posted 20 Dec 2019 at 23:15
The drug most commonly prescribed for men with flow issues is Tamsulosin, which works by relaxing the muscles in the prostate and the bladder.

Best wishes,

Chris

User
Posted 20 Dec 2019 at 23:47

So the first SPC was no choice, I came round from a GA to find People milling round, I had gone into retention and as we later found out they had punctured my Urethra. 

The SPC before RT was discussed at length with two urology consultants and was meant to be a just in case. I was still doing intermittent self dilatation to keep the stricture from closing down. 

The clots and debris started a few weeks post op and lasted about four months, by that time the bladder capacity was around 200 ml and any chance of getting urethral reconstruction and artificial sphincter were off the table. Three months later I saw a Professor in Manchester and the bladder capacity was down to 100 ml.

Flow rate, I got a Boots one litre urine bottle, urinated into the bottle and timed how long it took. 300 ml in 30 secs is an average of 10mls/sec. My consultant was quite impressed I was getting the same results as their flow machines, of course you don't get peak flow rate. Also useful to record volume to check bladder capacity.

The catheter is for the rest of my life we have talked about bladder removal and a urostomy bag,  but there is a concern that the radiation has damaged the part of the bowel they use to divert the urine.

Blockages can be down to what you eat and drink as well as constipation, medication etc. Some regular catheter users recommend Leon juice to prevent blockages, you can also get citric bladder washes.

On the catheter sites I mentioned before alot of people recommend Linc medical open tip catheters. My prescription service changed the brand of catheter I normally use, the new one started to irritate my bladder so after a bit of resistance I did go back to my original brand. Unfortunately they sent the wrong ones which wasn't noticed until we were half way through the change this week. The district nurse didn't have a size 16 so had to fit a 14 and then change it to a 16 today, the hole starts to heal very quickly so putting the 16 back in was tight and quite uncomfortable.

Size of catheter will affect catheter flow and blocking. I could no doubt tolerate a size 20 SPC but an 18 urethral is like having toothache pain in the penis and perineum.

Frequency of change is also a blockage factor as sediment builds up and the catheter gets crystallised. Problem with a  stricture is getting a urtheral catheter back in.

The position of the catheter can make a big difference to draining and comfort 10 mm one way or the other can mean the difference between spasms all the time and total comfort. I think they make catheters with drainage holes either side of the balloon to aid draining.

Thanks Chris

Edited by member 21 Dec 2019 at 09:32  | Reason: Not specified

User
Posted 24 Dec 2019 at 02:00

Yes, I have a success story. My story is not directly comparable to yours, but I think it is similar enough to be relevant, it may help your father. My problems were quite short term. A very helpful district nurse changed my life when it comes to catheters (of all the medical professionals I have seen over the last couple of years she is the one who made the most change to my quality of life), remember consultants you see once every few months, radiotherapists once a day for a few weeks, but you need to piss several times every single day of your life, so getting that right makes all the difference.

My first problem was urinary retention, which later lead to my diagnosis of prostate cancer. As a result of the urinary retention I ended up at A and E being fitted with an indwelling catheter. After a week Twoc (trial without catheter) was arranged. I had a few problems in that week, white discharge at tip of penis, blood, pain at tip of penis were amongst them. The fear that when sleeping a pipe would disconnect and things would get messy were all reasons I was looking forward to the twoc and being rid of the thing. I guess I ought to mention that if this catheter was going to be long term, sex was going to be a problem, not at the top of the list in an emergency, but when things may drag on for months it could be an issue. 

BTW I did actually find not having to get up in the night for a pee rather good, and when I went down the pub with my friends it was really convenient never having an urgent need to piss, just discreetly checking if the bag was full and then opening a tap (in the cubicle) when necessary.

Anyway the day of Twoc arrived, but things did not go well, basically I could not pee. So as arranged I called the district nurse back, with the prospect of a new indwelling catheter. I must admit my thoughts on the twoc failure were that I probably had an inflamed urethra after a week with a tube down it, and maybe given a bit longer may be a day or two to recover and all would be sorted, but of course how would I pee whilst recovering (catch 22). However she suggested "Clean Intermittent Self Catheterisation (CISC)", for which you are supplied with onetime disposable tubes (box of 90 is assumed to last a month, but just order as many as you need). This is not for everyone you need a normal amount of dexterity, and more particularly you need not to be frightened of the somewhat unpleasant feeling (not actually painful) of inserting a tube down your penis.

I was taught how to do this in about 20 mins (we are talking practical). I was told to do this whenever I needed to pee and just before bed and first thing in the morning. I actually only needed to do it for about a day and a half and then I was back to normal. The really important thing is that I now had nearly 90 tubes available and if I had urinary retention again I could now sort it out myself.

So once your fathers immediate urinary tract infection is cleared up, if he can do CISC he will not have to tolerate an indwelling catheter, he may then after a few days be able to piss quite normally, but if urinary retention starts again he can revert to CISC, until it all clears up and he is back to normal peeing, or if things are not going well for several days then he can call the district nurse or go to A&E and get appropriate treatment. The important thing about CISC is that it gives a breathing space, where at least the bladder can be emptied with out going for the full indwelling solution.

After HDR Brachy RT, I once again found myself with an indwelling catheter, and due to a bank holiday and no consultants being around, the indwelling solution had to stay until I could find someone to confirm that it would be OK to do CISC post RT. Anyway after a few days of CISC all was back to normal. 

I now still do CISC about once every three months just to keep in practice, so I know I can do it if I have urinary retention again. Believe me CISC changed my life, it put me back in control.

Dave

 
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