Anyone with experience of Sucralfate (Oxetacaine)

Hi yes I had if I was told swill  around my mouth 15 mins before I tried to eat then  swallow it. It worked up to a point but by end of week 3 it was clear I needed to have n g tube fitted. I and started the oramoroh  around the same  time for    break through pain in between the co codomol. Please remember opiates cause constipation so you’ll need laxido or similar snd take them regularly. 

You’ve got this day by day one day at a time  

Hazel 

Thanks Hazel, I thought I’d seen that someone had used it but couldn’t find it (I don’t think there’s a search facility in the forum as far as I can tell?).

I’ve read your blog too, very helpful - thank you. 

Now you mention it, they did tell me to swill it in my mouth but I’d forgotten that, and I just took my first lot tonight (swallowed straight down) and it hasn’t done anything. The pharmacy didn’t put swilling on the label either!

I’m going to take my first Oramorph now as I’m in week 3 and things are hotting up, so I’m hoping it will give me a more peaceful night. (They gave me the laxatives today too!)

Thanks again

Bridget

Scorpio2710 said:

I wondered if people had experience of how well the Oxetacaine worked? 

Hi. Yes Antacid with Oxetecaine (which is a local anaesthetic). The antacid thickens it supposedly to deliver the analgesia better. Swill and gargle were my instructions. Did absolutely nothing for me. People in the USA get lidocaine lollipops which seem much more sensible to me. 

I don't think there is any sucralphate in it though

Thanks Dani - it did nothing for me either! (I have Sucralfate which is apparently more or less  tithe same as Oxetacaine so they tell me). I’ve jjust had a really bad night and the oramorph didn’t even seem to do that much but at least knocked me out a bit. Paracetamol, curiously, seems to be the most effective thing but I can’t take as much as I need to cover 24 hours. I sense that long acting morphine may be on the horizon…feeling scared

Scorpio2710 said:

I sense that long acting morphine may be on the horizon…feeling scared

Long acting morphine was a complete game changer for me. It controlled background pain nicely. There’s not much you can do for the acute pain of swallowing but that becomes a non issue when you’re tube feeding. 
People underestimate the effect of paracetamol. It’s a better analgesic than we imagine. If you think about cocodomol it’s an opiate ( adding to the opiate you are already on) plus paracetamol. 
Don’t be scared. This is doable with proper pain relief. Ok you’ll feel knackered, miserable and need a bloomin good cry at times but plod on and don’t be brave. Get that pain relief when you need it. 

Scorpio2710 said:

but I can’t take as much as I need to cover 24 hours.

I suspect your team will suggest oramorph to be taken four hourly with paracetamol in between. That’s what I had. 
I was given the long acting when I was waking in the night to top up oramorph 

Thanks Dani that was what I needed to hear. They’ve said I can take the Oramorph 4 hourly so I’ll do that with paracetamol in between. I suspect I’ll need an ng tube before long but as you say it’ll be a bit of a relief as I’m struggling to get food down now. 
thanks again

Bridget

Hi Bridget. You’re on similar trajectory to Dani and I it happens all of a sudden if you think you need mg tube don’t hesitate as there’s nothing worse than realising Friday night it a along time j til Monday. Likewise make sure you’ve enough painkillers just hi her down and rant in here if you need to. I had a few cruise in kitchen floor at 0300. 
hugs Hazel xx

Thanks Hazel yes I think this forum is what will see me through this. I notice from yours and Dani’s blogs, that your husbands organised the feeds. I live alone so I’m a bit worried as to whether I’ll cope alright with this, but I’m sure it can’t be rocket science?

Pretty useless stuff.  Even my consultant agreed with my assessment of it!