Peristeen journey!

Hi guys as a lot of you will know I have been trying to get Peristeen prescribed rather than have a colostomy. I had to have an appointment at the hospital with the colo/rectal team. This went well and the specialist was yummy! Shame as he then stuck is finger up there and one in my hoo-ha! I said but I hardly know you and you haven’t even bought me a drink!!

I then was told they would have to look inside with a camera to see if there is anything up there might be causing the problem. I had a lower sigmoidoscopy on Wednesday afternoon. Well that was really nasty and you get to watch it on the tv screen as it is going on! Deeply gross.

Anyway today I am in really bad pain like dreadful trapped wind but not passing any! No fun and I am drinking lots of water and peppermint tea to try and relive it. All this to get the silly bag to wash you out!

Don’t you love the PCT nightmare… Any ideas what else I can do? Jules x

Hiya Jules

Am a bit confused reading your post. Why are they not letting you proceed with using Peristeen? Or, perhaps more correctly, why are they not prescribing it for you?

What were they looking for up there? I can guess what they found! But what difference is that going to make in helping them decide whether to prescribe Peristeen or not?

*Confused Ellie x

Ellie I know! They wanted to rule out there being anything nasty lurking! Took biopsies, he is happy to prescribe Peristeen once they have ruled out the chance of me having anything grim. I had to take A LOT of dulcolax before I went so it was suprisingly clear!

This PCT are just so tight my old gp would have just said OK if that is what you want to try give it a go. Down here while my GP is lovely I am always telling her things that she has never heard about.

Last night I threw up and my legs wouldn’t work at all, sweating for England so would seem I have an infection from it, also not passed anything (poo) since Wednesday. I have just had a movi to see if I can get it shifting in a whole world of pain

Getting worse might be off to A&E

Oh Jules-I hope you are feeling better now. I am just out of bed at 3pm-cant seem to get enough sleep just now!

I dont know how the funding stuff works. I went to continence advisor who contacted rep from Coloplast (that makes Peristeen). I decided to go ahead, phoned GP who wrote me a prescription and it was at my local pharmacy a few days later. I know for sure that I am the first person from the surgery to use the system so can only assume that the surgery already have some sort of guidelines of what they can spend and what on. But that is just as guess as there was no issue at all re me getting it prescribed. Whilst I understand they perhaps they need to rule out other stuff, to me it seems they are complicating something that initially seems simple-u need assistance with going to loo and a system that uses water and no medication seems preferable to me. *sigh-redtape and unneccessary worry for you is what I see.

All will be well-keep me posted re what happens (via PM if you prefer) as it never ceases to astound me how we are all treated so variably.

Ellie x