Ialuril

[Wallander]

My urologist has decided to do the instills with Ialuril. It's supposed to strengthen the bladderwall.
I couldn't find anything on this forum about it, so I decided to ask here.
The manufacturer claims that as much as 93% of patients show improvement, so it sounds promising... however, I don't rely on these % so much, since somehow I seem to be an exception at nearly every medication I have/had.

I was just wondering about any burning sensations, other than the obvious ones from the cath tube. My urologist said it had zero side-effects, but again... I somehow feel a little "I'll believe that when I see it", or hear about it from others who have had this themselves.

So. Anyone?

I'm going to start them in two weeks, since I have to get the meds from my pharmacy and the hospital said it usually takes up to 3 weeks to get it. The pharmacy however told me that there supplier had it in stock, so I'm a little :dizzy: about having to wait 2 weeks for 'nothing' really.
But well. Two weeks is not that far away, it could have been worse, right?

[Blueberry29]

Hello

I live in the UK and I am also to start ialuril instills in two weeks time. This will be my first treatment. I am a bit apprehensive as instills are quite an invasive treatment but I have agreed to try them. I have been suffering with ic symptoms for the past eighteen months: pain,pain,pain, some frequency, urgency, tightness etc. I am 47 years of age and never and bladder problems until eighteen months ago.

Please keep me updated and I shall also update.

Julie

[Wallander]

Hi Blueberry,

Yes, instills are quite invasive... but for me, I've had quite many cath tubes, placed either by a nurse/doctor or myself, that agreeing to them was done in an instant. I'm sure thought, that if I never had a cath tube before apart from the cystoscopy, I would have felt different. I still don't like them (of course, who would...) but at least I'm 'glad' I'm pretty much used to the procedure itself.

Sorry to hear though that you have these problems too. I hope that the instills will be a relief for you, and that they take away at least the worst issues you have.
I'll probably post something again about this when I had the first one done.

For now though, I need to check if ordering the Ialuril went OK at the pharmacy. They should have called by now, so I think something went wrong. I'm a pharmacy assistant myself, so I kind of expected this to happen (a rare product to be ordered goes wrong relatively often). No worries yet though.
At least I'm aware of what could be going wrong with ordering these meds, so I can act upon it in time :)

[Wallander]

I had my first instill done today. The nurse who did the procedure still recognized me from 3 years ago when she taught me how to self-cath. She was very quick, clean and easy. Unlike so many nurses/docs (and myself), who spent sometimes over 30 minutes to put the tube in. She did it without any trouble, but also acknowledged why doing that is a little harder in my case.
The only thing that hurt quite badly was when the cath tube hit my bladder wall after emptying my bladder.
I didn't even feel the Ialuril go in, I only felt a bit of air when the syringe was empty.

Keeping it in for an hour (which was half an hour longer than what the manufacturer says) wasn't a problem. Getting it out (apart from my usual problems) also didn't hurt.
I expected it all to be worse than this. This was actually 'a piece of cake'.
Now I hope it'll work...5 more to go every week after today, and then 4 more for 2 months. If it stays like this, procedurewise, it's not going to be a big problem keeping it up.

:)

[Blueberry29]

Hi

I am so pleased that it was a positive experience! That is good news. Even though it is your 1st instil have has your bladder improved a little? I was supposed to have my 1st treatment last Thursday, but the nurse was sick therefore I am waiting for her to contact me with a further appointment. Please keep us updated and I will let you know how I get on.

Julie

[Wallander]

Hi there Julie :)

Did you get to make a new appointment yet? I would have been disappointed if that would happen to me since I was quite anxious about starting the instills. How was that for you?

To be honest, things haven't improved. In fact seem to have worsened compared to the 1-1,5 week before, especially at night. I'm not sure if that's the Ialuril, I quite doubt it really. I think it's more due to the poking against my bladderwall from the cath tube.
It burns more, I wake up more at night, in fact, my total urineproduction at night has increased. (meaning not the frequency alone, but the amount produced. Not only about 100ml or less, but real volumes) I do urinate enough during the day, so I'm not sure what's going on exactly. I don't freak over it too much, especially since it's not an amount that makes me dehydrate or anything. It's just different than it was.

Also, I have urineteststrips and since the burning increased I decided to test my urine for a few days. Seems that there is indeed some form of inflammation going on, because my white bloodcells are up. That's only happening after/during bacterial cystitis normally of in a flare.
This does make me wonder about the effect of the Ialuril. They say that it should be making it all better, making the cath tubing I need to do every now and then less painful.
But, if cath tubing itself is causing my symptoms to worsen or just cause them... isn't this a bit useless anyway? Not just in the long term (should it work, will my symptoms re-occur after a while?) but also right now. If every cath tube kind of makes small damages to my bladder wall, is the Ialuril then going to be able to fix it more than the cath tube does damage?

I am still positive about the non-painful instills themselves, I'm just not sure how the afterproblems are related. I do hope that next week no worsening happens.
We'll see.

[Blueberry29]

hello Wallander

I am sorry to hear that your symptoms have worsened. Your bladder appears to be so sensitive and as you said the cath may be upsetting it. I know we should be positive about new treatments but instills as I mentioned before are so invasive to say the least. I really hope that your next treatment is better and you start to see improvemnts, however if this is not the case will you decide not to carry on with the treatment.

My treastments begin on November 2nd. As you mentioned I was a little frustrated that the instills did not begin on thr orginal date, however I was also relieved as i am not looking forward to being messed about with. I have made a promise to myself that if symptoms worsen during the first three treatments I will probably not continue.

This is the first treatment I have been offered and I feel I have to appear willing. My symptoms are pain, burning, urgency. bladder spasms, tightness and some frequency. Since Jan 2010 when my symptoms began I believe I have improved. In December 2010 I was bedridden with the pain, In my opinion my syptoms have improved since I started to estrogen.

I reaaly hope you start to feel better; how are you today? Please keep me updated and I shall let you know how the treatments are affecting me.

Julie

[Wallander]

Julie, I can imagine that besides being a little frustrated, you also felt a form of relief that you didn't have to get the instill yet. Nov. 2nd isn't that far away anymore, I hope that the first one goes well enough to at least keep you confident it might make things better for you.

As for me.. well... I'm dreading my next one. Today did not go well, painwise. The Ialuril itself was OK, thought I felt it a bit more than last time. I do think though that I'm in a flare, causing especially my urethra to be extremely painful this time.
It just burned so badly, another reason for me not to do the instills at home: I would have pulled out the cath right away...

Also maybe the latex from the cath tube irritates as well. I know that vaginally I'm a little sensitive to latex (burning), so it may be this contributed. It's probably not an allergy, but I do feel it was an additional factor today.
It may have been the size of the cath too, although I didn't have many problems with it before. The nurse did an excellent job placing it, so that wasn't the problem. She did write down that next time they should use a smaller one, and she said she was going to ask the uro what the cause of the intense burning could be. She was a little surprised by it (not as much as me though, I can tell you...). I doubt I'll get an answer though. Not to disrespect her, but I think she'll either forget or won't write it down simply because she sees so many more patients. And if she remembers, I also doubt the uro will have an answer, other than: that's the IC.

It may as well be, yet, it makes me a bit freaking out about next week. I really don't want that pain again, but well, what can I do other than wait and see?

8 more to go...(until the evaluation in Jan that is.) Though I have to say that if the next 2 are as bas as this one was, I'm not sure what to do. I'm still hoping that the Ialuril will take effect in taking away most of the pain, but so far I'm not very confident. But I should probably be a whole lot more patient...

Thankfully the burning got better after the cath tube was removed, so that was a relief in itself.

[Wallander]

Well, my third one today. I got a little unpleasant surprise as the nurse promised me she'd write down not to use a cath size14. I also called the hospital two days later to ask them if I needed to make my 'wishes' understood beforehand. The nurse I talked to said that I wouldn't have to: they'd have all sizes there and I could simply ask for a smaller one.

Wrong. Again, they had a size14 ready. When I protested, the nurse said that was all she had for women, and that it was the size they always use when catheterizing a woman. (which it's not as I had found out a few weeks earlier, as 12 is the one used mostly and a 14 is not so common. Or shouldn't be at least)
I wasn't happy with that,as I could have arranged my own catheters if I had known this.
Though it wasn't as painful as last time, it still didn't feel comfortable.

So next week I'll bring my own 10 or 12's. They also asked about any progress, but I had to admit that there doesn't seem to be one. In fact, the pain radiates a lot more than it used to. My back hurts, my kidney-area hurts, the right side of my lower abdomen hurts, as if I'm constantly ovulating. (no fever, no bacteria as far as my teststrips can tell me)
Also, administering the Ialuril has been getting more 'feelable' every time. I'm not sure if it's supposed to be like that.

The nurse so far only replied:"Yes, it could take a while..." I know that. But I wished things were getting better instead of worse/extending. She asked me when I'm seeing my dr again, but when I said at the end of January she didn't say anything else. Seems that that's considered 'not that far away'.

I know I can always call the hospital, and I might if this continues to 'grow' (where the pain is at, how much it hurts). For now I'm going to see what happens with the pain and stuff. Maybe the 3rd one will finally start to make a little difference.
I guess I'll find out in the next 7 days.

[Mc2203]

Hi Wallander- I know that when I was first having weekly instills I was still flaring quite badly from the cathing & it wasnt really until the monthlys that my urethra had the chance to calm down & I could feel the benefits more. I was having a size 12 cath at first but now I have a 10 & it feels that bit better.

I really hope you see some improvement soon!

Sarah.xx

[Landish]

My doctor use cath size 8 with me. Using size 14 with IC is absolutely cruel.

[Mothergoose]

I would think they would be giving you a UTI test before each instill, your symptoms sound like a uti. for uti's to show up on me I have to have my urine cultured.

For people with IC we seem to feel the pain of a uti at much lower doses of bacteris then other people.

Good luck MG

[Wallander]

Thanks all :)

@Mc2203: I am bringing my own caths next week. So that should solve one problem anyway. I hope that for me it goes the same as for you, that is that it will get better.
Did you have Ialuril-instills too?

@Landish: that's what the Ialuril-information also says: use the smallest one possible. But that doesn't seem to 'count' in this hospital. I wonder why then it was possible that I did get a size 10 after my cysto/hydro, but I think I'll ask the doctor when I see him. Or at least make him aware of the problem.

@MG: I have been wondering this too. MOstly because I know that some bacterias don't show up on a normal test (not producing nitrate). I don't think the hospital would do this, but I can ask my GP if she finds this an option and provide me with a form and a container. To me it doesn't matter who gets it tested.

Yesterday was just a 'sick' day it seems, but as far as I can tell I am doing a little better today, nauseawise, so I'm off to work and see how the day goes.

W.