Intermittent Self Dilation

User

Posted 01 Jul 2018 at 10:02

I am worrying myself silly because it is the weekend and I cannot talk to anyone.

On 19th June I went under anaesthetic for a Cystoscopy and Botox injections.

When I came round I had a catheter I was not expecting and the nurse said I was going home with it.

When the doctor came round to see me this was actually good news. They had found little or no radiation damage to the bladder and I just had a stricture.

On 28th June I returned to have the catheter out and was expecting ISD training, the nurse said not and made an appointment for a months time for that.

I received a copy of the usual follow up letter to my GP. One from the Urology Doctor and one from the Consultant. Both of these suggested I should start ISD after the catheter was removed.

My concern is that the stricture will start to close in that month without ISD.

Does anyone have any experience with this?

How soon will a stricture start to close without ISD?

User

Posted 01 Jul 2018 at 14:56

I think I would make an appt to see the GP tomorrow and also contact the urologist for clarification. Having said that the letter may have been a standard letter and the cystoscopy and catheter may have adequately dilated the stricture.

Where was the stricture? Was it in the urethra or the bladder neck opening?

Bri

User

Posted 01 Jul 2018 at 15:07

Thanks Brian

The stricture is one cm from the Sphincter

I have left a message for Urology nurses and sent an email trying to get to Urology Doctor.

I guess I will just have to start ringing round tomorrow.

The letters do not look like standard letters and I have convinced myself it will close up in a month.

User

Posted 01 Jul 2018 at 16:07

Alan

I would not get worked up over the delay in doing ISD, I have been doing ISD on and off for the last four years connected with a stricture. Sometimes the ISD seemed to agrivate the situation rather than help it. Bri and myself went different routes with our strictures, Bri left his alone and he seems to cope well with a slow flow, My bladder has been destroyed by RT and I have recently reduced my frequency from three times a week to once. When I stopped ISD after RT my flow actually got better.

As suggested speak to your GP, but you might find the plan is to let the urethra heal before starting ISD. There are a variety of ISD Catheters some are far more comfortable than others, so see if you can get a selection to try when you go for training. It is a simple procedure, just relax and make sure you get a supply of instilagel, it contains anesthetic and antiseptic along with the lubricant.

Thanks Chris

User

Posted 01 Jul 2018 at 16:22

Hi Chris

I can’t help but think why the Urologist would want them to do ISD training immediately if it wasn’t necessary.

Bearing in mind my stricture has only just been dilated I would have thought now is the time to keep it open.

I will definitely get the Instillagel, I used that for relief while the catheter was in. 🙄

All I can do is chase everyone I have left messages for tomorrow.

I am happy to accept a delay provided it comes from the Urology Doctor. I am not convinced about it staying open for a month with no ISD.

User

Posted 01 Jul 2018 at 17:21

Alan

Firstly we are all different and what works for one may not work for another.

I just checked my profile, following dilatations it took three months for my flow to drop from 20mls /sec to 1.5 mls/sec. So plenty of warning that it is starting to close, you can measure and monitor your flow with a urine bottle and watch, volume divided by seconds. Sometimes they will need several attempts before they sort it.

Thanks Chris

User

Posted 01 Jul 2018 at 17:32

Thanks Chris

Yes we are all different

I feel my flow has already started to diminish. It was a 1/1 and after the dilation and catheter removal it was about 20/1.

I will measure again.

I would like to thank everyone for their input but I have said all I feel for now and must wait until I talk to people tomorrow.

Please check again for an update tomorrow.

As people here have said, I am probably worrying about nothing. If I hadn’t got the letter from the Urology Doctor I would have accepted the nurses appointment without question.

User

Posted 01 Jul 2018 at 17:34

I will measure again tonight.

Making sure I don’t use the same jug we use for the gravy.

😀😀😀

User

Posted 02 Jul 2018 at 13:14

After phoning and leaving messages I finally got a call back. Not from the people I wanted but from the Urology Nurses who made the appointment in the first place.

Aparently although the doctors ask for it immediately they never do it for two weeks because it is too painful.

It appears there has been a cancellation so instead of four weeks it is now three.

I don’t suppose it will start to close up in that time.

Thanks for everybody’s comments.

User

Posted 08 Jul 2018 at 09:48

Intermittent Self Dilation training brought forward.

It is not as bad as I expected. I have been given three different types of catheter to try, I don't fancy the one that looks like a drain rod!

Everything is moving along much better now and I have got my head in the right place.

I have even found a positive to the Hormone injections!!!

Thanks for your previous comments.

Alan

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