Urethral issues and Mitrofanoff

Everyday living
1

Hi All

So, a couple of weeks ago I posted about a Mitrofanoff procedure. This is where a urology surgeon creates a new conduit into your bladder using the appendix and through which you ISC.

I saw the surgeon today and she has agreed to give it a go, but with a caveat: ie. that it may not resolve the issue I have which is a constant feeling of needing to urinate. She said because it could be a nerve problem and therefore not actually curable by going into the bladder by a different route.

My feeling has been is that the problem is essentially due to damaging the urethra by ISCing all the time and was thinking that by not using the urethra the feeling would just go. But she has said it may not work like that. So I could end up with having had the surgery and still having the constant urge to wee.

Ultimately, if that happened, I would be back at the point I’m at now. Since I would be able to just revert to urethral ISC.

So what have I got to lose? It’s just a bit of surgery. And some time of recovery.

Has anyone got any thoughts they could help me with? Either anyone who’s had similar problems with feeling like urethral catheters are causing trauma to the urethra. And if so, have you managed to do anything about it? Or anyone who’s just had to learn to live with a constant feeling of needing to wee (and if you have, how?) Or of course anyone who’s either had a Mitrofanoff or considered and decided against it.

I’ve said that I’ll go ahead with the surgery, taking on board the risk that it may not work, but obviously I still have a couple or so months during which time I could still change my mind, so any thoughts, from anyone, are welcome.

Btw, I don’t have bladder or urethral spasms, so that’s not the issue, urodynamic testing didn’t show anything up at all. And I don’t feel like it is spasm related.

Thanks for reading and if you can help me by thinking of questions, thoughts, solutions (if there are any?), I’d be most grateful.

Sue

(I’m posting this on both PP and EL because some people tend to stick to mostly one or the other.)

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Exactly how many extra holes are you planning to have all together?

You do realise that eventually you’ll run out of skin and we’ll have to cart you around in carrier bags.

AD

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That won’t happen. Don’t you know they charge 5p for carrier bags now?

I’m seeing my lovely MS nurse next week, and she’s an ex bowel and bladder nurse, so will probably give me a bit more knowledgeable assistance than the ever helpful Mr Durer.

Thanks anyway AD.

Sue

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What about the use of implanted electrodes for spinal cord stimulation to block the pain?

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Hello Bob

Thanks for this. In a strange way it helped me to think about the problem from a different angle. Although I don’t think this is the answer.

I was going to reply with a kind of knee jerk response of, ‘that won’t work, thanks’. But then I decided to think about it.

The Urology surgeon said the Mitrofanoff might not work because it could be all about the nerve signals rather than a physical problem. I think it’s all about a physical issue, in that the urethra is being damaged by catheters so is reacting by giving me a sensation / pain type issue.

If the bladder were spasming, then spinal cord stimulation might work. And indeed if the urethra is being affected by strange neurological signals, then it could work. And I suppose that’s what I’d have to ask for if I tried Mitrofanoff and it didn’t work.

I’ve been talking about it this morning with my OH. I know I’ve got at least a couple of months before the surgery would be done. So I’ve got a good while really, I’m going to talk to my lovely MS nurse about it, this week and see the urology nurse soon; I’ve written to my rehab doctor who is excellent at considering all the things I’d not realised might be an issue. And I’m just going to spend the next few weeks trying to see if I can live with it. In which case I’ll write to the surgeon and say let’s wait a few months longer before doing the surgery.

I sort of already know the answer to that, ie, no I can’t, but am going to try regardless. If I can avoid surgery I will.

I do appreciate your thoughts. It’s exactly the kind of thing that’s helpful. (Ever so slightly more so than ADs suggestion!)

Sue

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Thanks Sue, This might be useful Nerve tickler for the spine that relieves the pain of cystitis | Daily Mail Online

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Hi Sue,

Excuse my ignorance but can you clarify something for me?

You say that you believe that your urethra is now very sensitive because of damage caused by ISC .

This a different issue to the urge to urinate, which the Mitrofanoff procedure is designed to fix.

Which is the primary problem, urethral pain or urgency?

Anthony

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is it possible to monitor your bladder to see if you still get the urge to wee even when it’s empty. Then if that’s the case it implies it’s a nerve problem.

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So, it’s not the bladder that’s the problem. So a cure for interstitial cystitis won’t do any good.

It’s definitely the urethra. And it is a constant urge to urinate / pain. Which is worse when I’ve used a catheter. So I can go hours sometimes without having difficulty, then use a catheter and bang, from that point on, all I have is discomfort/pain and the urge to wee. This is often coupled with blood coming just from the urethra. And I know this is where the blood comes from because I can test my wee and find absolutely no blood (and no other UTI indications on the test strip). But if I wipe the outside of the catheter on loo roll, I can see blood, and if I wipe the outside of the catheter on a urinalysis test strip, the blood indicator goes black (that’s a positive indicator).

So I was expecting that if you take the urethra out of the problem of bladder emptying, then there would be no more catheters in the urethra and therefore no more irritation, damage or constant urge to urinate.

Does this make sense to you eminent urologists?

Thanks for helping me through the conundrum btw.

Sue

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So you have an increased urge to urinate after you use a catheter?

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Yes. Exactly. Which is why I think bypassing the urethra might be a solution. You’d expect an SPC to resolve things (and when the urologist originally gave me an SPC, she said ‘that’ll at least give your urethra a rest’), and to begin with it did. But having a catheter plus balloon sitting in your bladder actually leads to bacteria being present in the bladder; or so every time I got a new UTI I was told ‘well you will have bacteria, it’s expected with an SPC’. So when I had the SPC, pretty much I had a UTI all the time.

Sue

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Update. I saw my MS nurse yesterday. She is an ex bladder and bowel nurse so is a good sounding board for such issues.

She says the Mitrofanoff may not work in the way I think it might. Because although I think the problem is caused by catheters and trauma to the urethra, it may partly or completely have a neurological cause. Either neurological pain or spasms. High would mean that bypassing the urethra may not cure the problem.

She thinks I should have the Mitrofanoff anyway, in part because it ‘might’ resolve the problem. But also to ‘future proof’ my bladder emptying. In that if things change in time to come and I either become more disabled so getting on and off the loo is difficult, or if my hands get worse as I find ISC difficult, my only options would be SPC or urethral catheter. Whereas with a Mitrofanoff, it’s easier to self cath or for someone else to do it.

So, I’m letting a few weeks go by. I’ll be seeing a Urology nurse so will be able to discuss it further and the operation wouldn’t be until mid June or after anyway, so I have a couple of months to decide.

So I’ll let you know what happens. Thanks to all you chaps for helping, Ant, Bob and Krak. I’m really impressed that it’s been generally men who’ve been offering thoughts and suggestions. (Not forgetting Ollie too.)

Sue

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An update. I’ve decided to wait a while before maybe having the Mitrofanoff. I know earlier in this thread I said it’s ‘only’ a bit of surgery, but I’ve been thinking that actually it’s probably a bit more than that. And it will definitely have an impact on my mobility at least in the short term. What I’ve done over the last couple of months is to change IS catheter types, from Speedicath to Lofric, and tried to limit the number of times I use a catheter. In a way, the equivalent of bladder retraining. I’m finding that I can pretty much cope with the sensory symptoms. I’m even (I think) finding that I can tell the difference between a ‘real’ desire to empty my bladder, and a neuropathic symptom. And there are times when I can go hours without feeling the urge to go. So I’ve spoken to the urology nurse, who agrees with me. Had my name taken off the waiting list for the surgery and written to the surgeon explaining my decision and asking for an appointment in 9-12 months to revisit the situation. The very nice urology nurse has said to phone her if it gets worse in the meantime. So that’s that. Thanks to all of you for helping me to think it through, especially Anthony. Sue