Fear of self catheterisation

After chemo burnt the veins in my hands, I now have a terror of canulation. Head in my hands sobbing fear. I truly feel for you.

Hi trynab_stoical,
I can’t offer any help in respect of how to overcome fear of self cathertisation but you may not need to do it often.
Yes, you do need to be able to do it to have a Neobladder because when the catheter is removed you will need to train the bladder and check you are voiding well by self catherterising.

I am male and think it is easier for males to void well, and I have not had to catherterise since training Neo which was 20 months ago.

So although not answering your question, it could be just a short term hurdle for you to overcome somehow.
You need to make the call as to if you can do that or not go with Neobladder. My experience and quality of life with Neo says you should try and get through the phobia if you possibly can. Easier said than done I know.

cheers
Chasam

I have a question here. You have a neo bladder made then you have to self catheterise to empty it. I assume this would be for a period of time until the neo bladder stretches enough. You Chasam say you haven't had to catheterise for 20 months !! Does this mean that eventually the neo bladder empties itself ike your old bladder ? Do you get the call to wee then wee as you used to ? Or do you just have make sure you go every couple of hours ? 

I'm trying to get my head around this as i'm waiting for results of my bladder tumour being removed and will no doubt have to consider next steps.

If Stynab_stoical is so afraid of self catheterising does it mean it is such a fearful thing ? i don't understand.

No it's not a terrible thing. Sorry if I'd given that impression. But I have seen it listed as one of the reasons why people are considered unsuitable for neobladders - "inability/unwillingness to self-catheterise". I'm worried that I will end up in this category unless I can find a technique to overcome my fear of it. I'm sure most people are less fearful than me. I presume doing it oneself is no more uncomfortable than when a nurse does it. It's just a psychological barrier I have. Obviously only you can know how you feel about doing it.

Emptying a Neo is a different technique in that I push down with my stomach muscles, a bit like going for a poo. But in effect it is like my old bladder.
Everyone is different, and I haven’t read anything on this forum where someone has had a better outcome than me, so maybe  I was lucky and everything (my health, fitness, surgeon,,etc) aligned and I had the best possible outcome.
Others would have had degrees of what I report, but I can only say how I am ,and the facts are:

I do not self catherterise anymore, and haven’t since August 2020.
I get a feeling of fullness that tells me when to go for a wee
I wake naturally at night with that same fullness sensation and am 100% dry day and night
I do not set any alarms day or night. That took about 15 months as initially I was setting my alarm at night every 3 hours and wore Depends.
Even having my prostate removed did not affect my potency ( although obviously I do not ejaculate).

As I say, maybe just very lucky. And extremely grateful.

A phobia is often illogical. I am scared of house spiders and yet I know they can’t hurt me.
Stoical obviously has a fear of catherterisation, which is very real but (like my spiders) unfounded.

Catheterisation is not painful.  It is Uncomfortable and unnatural but I managed it easily and would do it agin now without an issue if needed (I still have kilt…just in case)

Right. So it sounds like it has worked out really well for you Chasam. But i guess we're all different and others would tell of less success.

Fantastic that you're dry. That makes it sound like you've got it all working how it could work if you follow all the right practices.

Great info.

And trynab_ i think i see what you mean. Some things, in general life, i can do easily and some things i can't and we are the way we are.

This forum, and thanks to the people that post on it, really does help give a picture of lived experiences and possibilities.

Thank you both for sharing.....Del.

That's helpful. 

Can you give me an overview of how often you had to do it from right after the op? When you first had to do it? Do you need to it as part of a routine or only when you feel the neobadder isn't working as it should? What sort of lotions and potions helped and all that? 

I had a setback so my catheter was in for 6 weeks rather than 2.

There is obviously no self catheterization with a catheter in place.

You need to self cath every 2 or 3 hours the first day and gradually reduce over the first week.

The purpose is to check how well you are naturally voiding, so you should be  extracting less and less urine until very little is being self extracted.

I documented all quantities and reported to my urologist who told me I didn't need to carry on after a couple of weeks if I remember correctly.

thank you. 

The issue of self cathing is one that can vary according to consultant's preference, but it is something you do need to be prepared for. Initially for me it was once a day, in the evening, to check how much residue remained after self voiding. After about 6 weeks I was doing so well that I was told I could drop to every other night, with the idea of phasing it out completely. However around the same time, I lost the ability to fully void & started to need to self cath more often instead. This is more common for females than males, but does sometimes happen. The experts seem unsure why this happens - my theory is that because neo can shift around a bit inside, sometimes it collapses on itself or tilts & blocks the exit. (If neo gets too large & floppy, the risk of not being able to empty also gets greater.) I can empty between nil & half total volume, varies from time to time. So I have to self cath every void, which I find is no problem.

Self voiding is a technique you need to learn, each of us has their own method. The stretching is done by trying to hold on a bit longer each time before voiding, even if you leak. (Incontinence is to be expected at first.)

The choice of stoma or neo, if neo is possible, is yours, you don't have to have neo if they offer it. Have a think if you might find self cathing easier than someone else doing it. Hypnotism might be an option but not one to rely on. Unless you can be sure you could self cath, don't go for neo. Many people prefer to have stoma anyway.