intermittent self dilation, personal experience advice anyone?

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Hello, after quite an ordeal and several months of messing around, i have been put on a self dilation regime after my recent second urethrotomy, i was just wondering what sucess people have had and how they found it, i have done two dilations so far, first one was painful but i went into the bladder to be sure I'd gone through the bulbar stricture, and that was with a lofric origo, but the second dilation with a lofric dila-cath which i didnt go into the bladder was fine after taking a painkiller beforehand, i went until I felt it pushing the sphincter as my stricture is 15mm before the sphincter so as long as I feel it at the sphincter i know I've gone through it.

I'm on 18f / 6mm ones.

Iv heard about some people finding it very successful and some finding it useless. As long as it delays the need for more surgery it's a good thing I suppose and I'm willing to do it, i know it's all down to compliance too. I'm on twice a week for first 4 weeks then once a week from there on.

part of me doubts that's frequent enough as I had a 4mm catheter which had been forced through it when i had an emergency visit when it fully sealed up 3.5 months after my first urethrotomy, and it was taking too long ( had waited nearly 3 hours in agonising pain with close to 2 litres inside by the time it was drained ) to get a theatre sorted for a suprapubic catheter, i had that catheter removed when i was changed to a suprapubic one anyway a 4 weeks later, and the 4mm hole had resealed within 10 days, that's a 2mm contraction from each angle, so if I dilate to 6mm, it could contract enough in 7 days to make it nearly 4mm and stop the catheter dilating. I have some 16f and 14f caths as back up incase it gets to that but hopefully it won't.

So if anyone who is on ISD could give me some advice and personal experience opinions and info it would be helpful, thanks.

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  • Posted

    I believe that I responded to your concerns some while ago, but rest assured that I have nothing but the best of experience with self catheterisation.

    My first urethrotomy was way back in 1969, when I was 25 years old. I then had repeated urethrotomies practically every year and later about once every six months. In 2004, I had a similar experience when I blocked up totally. The A&E doctors could not pass even the thinnest catheters. I ended up having a supra-pubic catheter fitted. When I saw my own consultant, he advised me to start using intermittent catheters. This was satisfactory until sometime in 2014 when even the CH8 catheter was getting a bit painful to use. I had another urethrotomy and am back on intermittent self catheterisation. I am now using a CH14 catheter (LoFric Neleton). I now do self catheterisation once every two days - before I go to bed. No pain so far. I insert the catheter all the way into the bladder as my stricture is just by the Sphinctre. My personal experience is all good and I intent to continue on a regular basis and hope that I will not need another urethrotomy.

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    • Posted

      Yes I remember, i posted on that thread again to contact you but there was no reply.

      You had your first one in 1969? What technique did they use? The sacshe 12 o clock cut technique was brought in as standard procedure in 1973 if I'm not mistaken, you must of been one of the first people to have the procedure when it started being used?

      You only use the 14?, is that the biggest you can take? I am to use the 18 as much as I can but if they start to be impossible i have to drop down to 16 or 14, i tried a 14 before my 18s arrived in the post and i thought (was given a handful of 14s and 16s after cath had been removed and spoken to urology nurse specialist, she would have given me some 18s but they had expired and i had to order some) I would try use one to see how it was, ( i didnt use one in front of the nurse, was too embarrassed) and i found the 14 was too thin and sort of stabbed into the urethra wall a bit.

      The 18 doesn't hurt the stricture but is very uncomfortable going through the sphincter and prostate. I just did one a moment ago with an 18f and it was fine going through the first resistance which I'd assume was the stricture, required a bit of a push, and then felt it at the sphincter which was uncomfortable but ok, felt it keep trying to close and felt like peeing but carried on, and it went about another 2cm but got increasingly painful and resistant, i tried the cough and attempt to pee techniques but just couldn't bare the discomfort to get into the bladder even after taking 60mg co codamol 40 mins ago. I have some instillagels but the sphincter would stop it getting past and the nurse specialist said not to use them as they may conflict with the hydrophilic coating on the lofric catheters, i used half of one anyway and waited a min or two then peed to wash it out then did the ISD but the gel didn't numb anything haha.

      I might be being scheduled for a cystoscopy in several weeks as I handed in a urine sample at docs a week ago and they rang me and said was blood in it and to drop another one off two weeks later, i explained the ISD but they still want one, last time this happened i got scheduled for a flexible cystoscopy which i chickened out of 2 years ago, i greatly regret doing that as the stricture would of been found a year before it was and the whole ordeal would have been done a year earlier, id probably have had a urethroplasty over a year ago, kicking myself so much! Wish I had a time machine or something so didn't have to experience the last several months. Although if the urologist back in may on my first urethrotomy had not overruled the general surgeon assisstant who had explained the ISD, and have changed it to not doing ISD, i feel the last several months wouldn't have happened if he had put me on it, he said he "feels catheters cause more damage than good " i aren't sure if i should put a complaint in as the last 5 months have been hell and probably wouldn't have happened if he'd just accepted the statistical facts and uptime on ISD.

      Sorry to rant, i'm just very annoyed as iv suffered physically and financially and mentally from cock ups numerous times in the last several months.

      Do i remember you saying that your stricture returned because you got a bit lazy and missed a couple dilations and it returned within a few weeks?

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    • Posted

      Yes I remember your earlier posting. I was on holiday at the time and did not have easy access to e-mails.

      I am not familiar with the incision method used in my earlier urethrotomies but did have regular ones from 1969 to around 2004. During the latter part of that period my Urologist was constantly nagging me to go on to do ISD, but I was reluctant to do it because I thought that it would hurt me a lot.

      In 2004, I had total blockage and had to be rushed to hospital where I had an emergency supra-pubic catheter fitted. It was when I saw my own Urologist that I was finally persuaded to go on to ISD. After the urethrotomy in 2004, I finally agreed to go on to ISD. Following the operation I started with a 12CH ISD but quite soon had to come down to 8CH as the larger ones were starting to hurt me. I maintained on 8CH but was too lazy to do it regularly. Sometimes it would be about two weeks before I decided to use one. I took some catheters when I was away on holiday or business trips, but did not use them until I felt that there was a blockage.

      Early in 2014, I was starting to block up and had to use the 8CH about three or four times a day in order to get any flow. I had a urethrotomy in August 2014 and immediately started on ISD. I have been recommended the Lo-Fric  Neleton as well as the Tiemann. The Neleton has a straight end and is easy to pass through the urethra. The Tiemann has a sharper and curved end, which is a bit uncomfortable as it passes through the urethra but gets into the bladder easier than the Neleton.  At the moment I am alternating between these two. I was asked to try out the Tiemann because my stricture is right at the entrance to the sphincter and so had a curve in the urethra.

      I am determined to do my ISD deligently and regularly so that I don’t have to go below 14CH for a long time to come. I do have a good supply of 12,10 and 8CH catheters but hope that I do not have to use them at any time.

      I trust that I have been helpful.

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    • Posted

      How much did you have stuck in you when you went into acute retention? I wish they'd just done a suprapubic one straight away instead of trying a normal one 30 mins after I arrived and then deciding i needed a suprapubic and then after me waiting 2 hours on a ward i couldn't take it anymore, bladder was bulging out my abdoman, and then a doctor decided to try another normal one but a more rigid tougher one and it took him 2 minutes of twisting and pushing to pierce it. Drained 1.4 litres straight away, then another few hundred ml shortly after that. I don't know what was taking so long to get a theatre for 20 mins.

      I guess we both know what pre birth contractions feel like for women haha.

      Do you use the origo or primo ones? The dila-cath only comes in 16 and 18, I've found they aren't as frictionless as claimed, yeah there's no need for messy lube but i can feel quite a bit of pushing and pulling on the wall with the lofric origo, i left them in the salt water solution inside the packet for a good minute too.

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    • Posted

      Yes. the episode was very painful. I felt as if the bladder was about to burst. The young doctor was trying all sorts of catheters to penetrate the stricture but to no avail. Fortunately, a urology registrar was available and he decided to do a supra-pubic incision and used it as a demontration to the two new doctors (who were under training).

      I use the Lo-Fric original all purpose catheters and they come from size 22CH to 8CH. It is easy to use and I have always used just drinking water to lubricate the catheter. After using these catheters for over ten years, I have not had any infections. I did have an infection after my last urethrotomy when I had the permanent catheters in for about a week or so!

       

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    • Posted

      Yeah I can relate the feeling, took 150 mins from me arriving in A&E to finally get a catheter in, my flow cut off about 2pm, i rang local GP at about 4:30 to ask if they could fit a catheter, they said no, and to have a large drink and see if the extra pressure could create a flow ( worst possible advice they could have given) reached 5:30 and i rang 111 but after 20 mins faffing around and getting no where I put the phone down and rang 999 as I was already in alot of pain, took 25 mins for ambulance car to come, the woman was very reluctant to see to me, as though she thought I was a hypercondriac and didn't need emergency treatment, did some blood pressure tests and other things and i said this is pointless and doesn't help, she said "can't you get to the hospital on your own" and i said no, a taxi wouldnt accept responsibility for someone needing an emergency visit to A&E. So she gave me a lift, the car was full of equipment and she had to take things off the front seat and pile it on top of the other stuff on the backseat, was in no rush to the A&E department and drove casually, on the way I said "argh i really need to pee " and she said "you're not going to wet yourself are you" in a disgusted manner, i replied "well....no... I can't pee, i haven't been able to for like 5 hours, that's why I rang you" got to A&E at york hospital in like 10 mins, they asked me to try pee anyway, couldn't, then they measured how much was inside, showed 770, (those scanners can have a couple hundred ML discrepancies,) after 20 mins a doctor tried to insert a 10f latex one, failed, said he wanted to find a more rigid type and disappeared, never saw him again as he couldn't find the one he wanted, they fitted me with a cannula and took a blood sample, and said I was to go to theatre for a suprapubic catheter insertion under general anaesthetic, i hate GA and started to panic as they wheeled me out the department, i ended up on extended stay area, they scanned me again, 640.... I said "it was 770 an hour ago" they looked confused, and i was there for about 90 mins until I couldn't bear it anymore, i shredded my t shirt and went into a panic attack so a another doctor came with a trolly and was going to try another catheter, i said "it's pointless it will fail, i need a suprapubic!! " but he wanted to try anyway, after about 2 mins of forcing and twisting and a hell of alot of pain it went through and 1.4 litres was drained straight away, and then another 300 ml over a few minutes after, he was surprised and felt bad for me.

      I was very thankful but it shouldn't have been attempted in the first place, standard procedure in the case of acute retention due to a stricture is to do a suprapubic straight away. The urologist in the morning said they shouldn't have even tried it. As it's preferred that strictures not be instrumented 10-12 weeks before surgery in the case of urethroplasty which is what I was going to choose should it recur like it did. So i had to get it changed to suprapubic anyway 4 weeks later in October, which was another cock up, was a blind insertion and i had some pain awareness of the abdominal cutting and / or trocar dilator insertion over the gguidewire, woke up in screaming agony aswell so obviously either the local bupivicaine anaesthetic had worn off or not even been used.

      Been other cock ups like my referral to leeds for plasty which i chose in September the morning after the emergency visit, was lost / cancelled without my knowing or permission. I saw it on the screen at the local GP a couple weeks after as sent but not seen yet, yet after the suprapubic catheter insertion the urologist said the referral hadn't been sent as they were still waiting on my decision..... O_o. And offered me the OPEN trial which with the new knowledge of the referral not being done, i took, i could have been back in for repeat urethrotomy in 3 weeks he said, but he recommended entering the trial as I was having trouble deciding again, such a decision is hard as choosing between which sense to lose if you had to lose one. So i entered that after speaking to the representative urologist a few weeks later, he said he'd put me down as urgent whichever op i was randomised into, i was randomised into repeat urethrotomy, and after complaining to the waiting list department after a few prior calls to see if they could get me in i got one for 8 weeks after being put on list, op was cancelled an hour prior to due in theatre as they forgotten to reserve me a bed which i explained id need at the pre op, and due to needing to be monitored for blood loss post op they cancelled it, would have been another 4 weeks wait but i complained and got a 2 weeks delayed appointment, got there, and they'd forgotten about the blood condition i have again, they had a bed for me but with the knowledge of my bleeding condition and no measures taken for it, they were going to cancel it again until after speaking with haematologist who thought it would be within tolerable limits to proceed, and they did .

      Thankfully they removed the suprapubic catheter during surgery as they had to use a flexible scope through the belly hole to watch at the other side of stricture, and left a urethral catheter in place for 15 days, was 7.3mm, had that out last week's Tuesday, and on ISD now like I should have been put on back in may after first urethrotomy, but the urologist went by his own biased opinion of "catheters cause more harm than good "

      If he had put me on it i think none of the last 5-6 months would have happened and it shouldn't have happened. I aren't sure if i should put a case forward.

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    • Posted

      Did one after using some instillagel anaesthetic lube i had hanging around which i got with the spare long term caths a district nurse ordered back in September for some reason after the emergency insertion, so I thought i'd use one even with the urology nurse specialist last week saying it's probably a bad idea as it may effect the coating on the lofrics and prevent them working.

      and it was much better, alot easier, the coating on the cath was fine as instillagel is water based and very loose fluid. the 6ml tube was more than enough, numbed the tube and sphincter and relaxed it, last time I couldn't get past and it was too painful to push any harder, but this time was so easy, just light pressure and it went through, there was a downside, either the bladder didn't like the presence of a alien object or being deflated without meaning to, or the instillagel got into the bladder and messed with the nerves, as even though id just emptied it with the catheter it kept sending the signal to go and kept contracting to void, nothing major, just had to stay in bathroom for 20 mins till the anaesthetic wore off.

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    • Posted

      Maybe so but i find with no numbing it hurts too much to be able to push past the sphincter and prostate, it clenches too much and I try the cough and try pee techniques but just couldn't get past within tolerable pain limits, i'm a wuss with pain I'm giving myself, I pushed enough to break some small capillaries and get blood, only a few millilitres but damage is damage, and can make more scar tissue.I'd rather not have one directly inside the sphincter as like yours, wouldn't be viable by open plasty without damaging sphincter.

      I found the gel numbed the sphincter enough to prevent it clenching, might try using less next time, or just not try go into bladder, i can tell when iv gone through stricture so no need to go that far, the urology nurse specialist said to try go that far just to be sure iv gone the whole length, but she didn't know exactly where the stricture is, i do, so I should be fine.

      Have you had any UTI s? I would of thought tap water would contain some things, water around me is very hard water, lots of minerals, but i hear tap water even after cleaning still carries somethings, plus the inside of the tap can harbour bacteria. I'd prefer to use cooled boiled water. The origo i have have a built in salt water packet, squeeze the pack and it bursts inside and fills the catheter, then open the pack. Quite handy.

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    • Posted

      Hello David, how are u?

      I read ur story with urethral strictures and I learned many things from ur experience.

      I am a patient of urethral stricture..

      Can u describe what happened with u since August 2014?

      U said that u started on Lofric c14 cath.. Are u still using them without symptoms?

      My best wishes..

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    • Posted

      Hi Saad,

      Thanks for your querry. Yes, I am still using CH14 Lofric Catheter. I use it twice a week. From my past experience I think that it is important to use it very regularly to prevent the growth that it causing the restiction to take over.

      I am still without symptoms and I plan to continue with the self catheterisation for as long as it is required.

      Best wishes with your management of the stricture.

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    • Posted

      Thank u David.. u r great source of information for me..

      But I have a question..

      U said that in 2004 u started on c12 cath and quite soon u couldn't continue on it because they start hurt u

      and now u r about 1year &5 months on c14 without hurting..

      What is the cause of such difference?

      An

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    • Posted

      Hi Saad,

      I may have got the dates wrong. I had a repeat urethrotomy in August 2014. Since then I have been able to use CH14 size catheter. I feel that it is important to catheterise regularly whether you feel the need to or not (I do it twice a week). The day after using it the flow seems difficult  but soon it becomes easy. I have not felt the need to see my urologist since August 2014 - and long may it last.

      Hope that helps.

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    • Posted

      Hello David..

      Really I read many urology books to take some information but I found that ur experiment in these years have information more than any other book. Really I thank u very much for all the information u gave..

      I have some questions please..

      1.Do the urethrotomy and dilations affect and increase the length of the stricture.. for example increase it from 2cm to 4cm length and so on?

      2. U said in ur story that u have urethrotomy in 2004 and u continued on self catheterization until 2014..

      Can u tell me Did u use the caths regularly in these 10 years? what is the longest period u ignored self caths e.g.1 or 2 months ?

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    • Posted

      Great experince David..

      Now u r self cathetrizing since August 2014 (1year and 5months).. During this period,

      Did u have any pain, blood or resistance when u insert the caths?

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    • Posted

      I am continuing to use CH14 Catheter. I have some resistance but no problems inserting the catheter. There is some tinge of blood when I urinate after the insertion but that stops when I urinate the secont time.
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    • Posted

      I am not sure about any increase in length of the stricture. This was not checked by the Urologist.

      Yes I was doing self catheterisation for 10 years fromm 2004. My failure was that I was not doing it regularly. I started with CH12 and gradually worked my way down to CH8. I did not use it regularly. In fact, I was using it as and when I felt that flow was getting slow. some times it would have been for a month or so but never longer than a month. This was my fault.

      Since my last urethrotmy, I have been using a CH14 twice a week and I am determined to keep going with CH14.

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    • Posted

      No. I may have a tinge of blood, equivalent to a drop of blood mixed with the urine, when I pee for the first time after dilation. It does not happen every time. Infact I have not seen any blood for the last five weeks or so.

      The whole process takes a few minutes (less than five minutes).

      I don't have to use a huge pressure - that is what I meant by saying "some resistant" but I have never failed to insert the catheter.

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    • Posted

      U said in ur story.. In 2004 u started to block.. then u were using the self cath 2 or 3 times a day to get any flow..

      Can self caths open blocked urethra??

      Can u tell me how to predict the closure before it happen?

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    • Posted

      I was using CH8 catheters to open blocked urethra but it was getting very tight. This was when I got myself to the hospital and had a urethrotomy.

      I was not able to predict closure. I was noticing that flow was difficult and I had to exert a lot of pressure to get even a small quantity of flow.

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    • Posted

      Hello David, I just started self catheterization twice weekly since 2 weeks..

      I have burning micturation since I started self cath...

      Do u have continuous burning micturation since u started self caths in the last 1 year & 5 months?

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    • Posted

      Hello David, I am using cath 14 for 3 months twice in the week and doing well

      But before 3 days I had urinary tract infection with bacteria named kleibsella

      .. I had frequency, irritation and blood in urine

      I took antibiotic and cleared the infection but I am afraid from recurrence

      U r catheterizing for about 12 years

      Did u have the same symptoms before.?

      If you had.. how many times u had that?

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    • Posted

      Hi Saad and all the rest of you bionic penises ( that's what I'm called now, hahaha), 

      i have picked up 3 UTIs in a little long than 1 month. I've been to various doctors which have just tried to make money from me, even saying they suspect cancer. This is bull as I was 100% before op but now my prostate is enlarged.

      can someone pls tell me if they have any advise, I've extremely sick one of the times and am taking a lot of strain and pain. 

      Im using Romsons Nel Cath FG - 16 every 4th day now. I was on everyday until last week when my 3rd infection started. I have only done 1 of the 4 Sy interval as my new doctor only suggested it last week. The doctors have no idea what is going on. I've been to 4 doctors and none is sure what is causing it. I'm also using a anaesthetic jelly - lignocaine hydrochloride gel ( might have similar name in your country.)

      they have now put me on a month  antibiotics.

      pls someone helppppp!!!!

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