A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Cathy » Mon Feb 24, 2014 9:42 pm

Oh Leila,

I just so empathise with your comment about not normally speaking out etc. It's amazing what you feel you can do when spurred on by wanting to care for and protect someone you love.

I remember well a year ago trying to get a new surgery to take on Jonathan (as his old was so cr*p) and ending up sitting in the surgery demanding to see the Practice Manager ( they were being REALLY awkward about taking him on). I was so fired up and COMPLETELY prepared for them to call the police if they wanted me to leave if they refused to register him. Anyhow, thankfully the long arm of the law wasn't needed and they agreed to accept him.

Keep on keeping on as we say...


Cathy xxx

Edit: The point being of course, I'm not normally someone known the the police...

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Tue Feb 25, 2014 10:41 am

...
Last edited by Fifi on Wed Mar 05, 2014 7:31 pm, edited 1 time in total.

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Tue Feb 25, 2014 10:43 am

..
Last edited by Fifi on Wed Mar 05, 2014 7:32 pm, edited 1 time in total.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Creons, Nurses, and Here. I'm at a loss.

Postby J_T » Tue Feb 25, 2014 10:47 am

Lol, good work! Let us know how he gets on.

Julia x

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Creons, Nurses, and Here. I'm at a loss.

Postby RLF » Tue Feb 25, 2014 11:03 am

God, I'm sorry to hear how much of a struggle you are having! I didn't really consider how hard it would be if the patient them self were part of the battle. My mind boggles at how you are coping, luckily Carl is wise enough to do as he is told! lol. I'm so pleased he phoned Jeni, it was going to be my suggestion till I had read someone else had done it, it should really help. They are our beacons of light in a dark night, and it's amazing how talking to them can help so much. I don't think anyone has said it but for diarrhea Carl has found Codine to be the only thing that stops it. That is after a chemo, so might be different, but if the Loperamide isn't working it might be worth asking for some of that?

PCUK Nurse Jeni
Posts: 1104
Joined: Mon Jun 14, 2010 1:30 pm

Re: Creons, Nurses, and Here. I'm at a loss.

Postby PCUK Nurse Jeni » Tue Feb 25, 2014 11:18 am

Exactly Rob - this is something which can work also - codeine.

But, I think it will be a bit of a process to sort out this diarrhoea, and I think getting to the root of it is the priority Ie: to see what is causing it.

Then, once that is established by checking the stool for any bugs etc...and also doing a faecal elastase to ascertain the need for enzymes (which is a definate as we all know), then one can plan proper control of this, such as increasing loperamide, pancreatic enzymes, and adding in codeinse if needed. Thanks for mentioning this Rob.

Regards to Carl.

Jeni.

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Tue Feb 25, 2014 12:18 pm

..
Last edited by Fifi on Wed Mar 05, 2014 7:32 pm, edited 1 time in total.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Cathy » Tue Feb 25, 2014 1:38 pm

Headhurts wrote:
> That made me smile. Was Jonathan there when you did it? I hope I don't
> have to do anything like that!!
>
> Leila xx


Leila, he was. I was so worked up expecting a fight with them I was having palpitations. The practice manager appeared and couldn't have been more amenable (thank heavens) and we both went home quite happy and relieved and without a police caution lol. I was exhausted - that's just not me at all.

Hope things get sorted for your Dad. Great that he has said he will ring Jeni. What a turnaround!

Xx

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Tue Feb 25, 2014 5:43 pm

..
Last edited by Fifi on Wed Mar 05, 2014 7:32 pm, edited 1 time in total.

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Tue Feb 25, 2014 5:44 pm

Cathy,

That still makes me smile, you sound quite a character!

Leila x

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Tue Feb 25, 2014 8:43 pm

..
Last edited by Fifi on Wed Mar 05, 2014 7:33 pm, edited 1 time in total.

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Didge » Tue Feb 25, 2014 10:18 pm

Leila, that last line did make me laugh out loud!
Good luck with it all
Didge x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Creons, Nurses, and Here. I'm at a loss.

Postby J_T » Tue Feb 25, 2014 10:57 pm

More progress Leila, can only be a good thing.

X

PCUK Nurse Jeni
Posts: 1104
Joined: Mon Jun 14, 2010 1:30 pm

Re: Creons, Nurses, and Here. I'm at a loss.

Postby PCUK Nurse Jeni » Wed Feb 26, 2014 9:53 am

Hi Leila,

Thats great, but let me just clarify what I ACTUALLY said to your dad! I said that occasionally, and we see this happen very occasionally, folk are allergic to the CAPSULE COATING of the creon, and with some people, they are unable to break down the capsule coating. Hence, the enzymes particles do not get released. The way around this is to open the capsule, being very careful not to handle them (or you can activate them), and to SPRINKLE them on a teaspoon full of mashed banana or apple sauce. Then take them as you would normally do before (or before and during) your meals and then rinse the mouth with a half glass of water after taking them, to make sure no small particles of enzyme are left in the mouth. I did not say to mash them with the banana! I said to sprinkle them on mashed banana, or apple sauce. If you mash the particles you will damage and destroy them - they need to be activated on reaching the stomach only. I said to try this and see if it worked for him, and this would show him if the capsule coating is an issue for him.
He was also taking his creon with hot tea, which is incorrect, as this will just damage the enzymes as well, so I said not to do this, although he was taking them with water as well at times, but at times with tea (incorrect).

So, I hope this has cleared things up? The micro-spheres inside the capsule should never be handled, or mashed etc...as this will damage them and make them inactive. I hope you can pass this onto your dad Leila.

Kind regards,

Jeni.

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Sones » Wed Feb 26, 2014 11:55 am

thanks for info Jenny, Ive been taking Creon for two and a half years now and sometimes take it with a hot drink - wont do it again.
sue