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

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[nikkis]

Leila, you have done such a fab job, I think it is very hard to take advice from your child, but your love and care for your Dad has meant that you have really been able to get through to him, and I really hope he feels better soon.

I often find that by mentioning things I have learned here, and from Jeni, I can really surprise the medical profession,and they are convinced I know what I am talking about! I have a nursing background but knew nothing about pancreatic cancer , and there is very little knowledge out there.

Nikki

[InfoForMum]

Leila, so identify with this. Thankfully my Mum is open to what I bring her, but I know, had it been my Dad, I would have been in a desperate position always being told to not contradict the doctors even when I knew they were wrong.

Cracking job hon and trust your instincts.

Sarah

XXX

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[Cathy]

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...

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[J_T]

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

Julia x

[RLF]

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]

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.

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[Cathy]

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

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Cathy,

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

Leila x

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[Didge]

Leila, that last line did make me laugh out loud!

Good luck with it all

Didge x

[J_T]

More progress Leila, can only be a good thing.

X

[PCUK Nurse Jeni]

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]

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

[PCUK Nurse Jeni]

No problem Sue!

Jeni.

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[marie souter]

Aw leila,

thanx for your kind words, at the time I was so exhausted but the urge to care for your loved one supercedes anything else..the thing is no medical professional will care as much as you..I can see this changing you...as you say you are normally a quiet person...and it does change you..you are going to be so much more assertive..I think it's like when you look after your kids..anyone messes with them you're like a lioness...your dad sounds like an amazing man I think as he sees the changes the creon will do for him he will be much happier to take it .. but remember to tell him sometimes it can need tweaking depending on what hes eating ..

I totally feel for your dad with the gastroenterologist, you;d like to think they would bend over backwards but its not always the case .. we got some very conflicting advice especially with the diabetes...eat what you want...don;t eat what you want...to and fro...in the end my mom had so little appetite I just said .. screw it and gave her what she wanted ... you can always ask the moderators for my email address if you feel you would like to know more of my 'practical journey' I really dont mind...I was lucky in the fact I was like a sponge...I agree with Nicky we do end up mini fonts of info...you pick so much of the terminology docs and nurses alike thought I had a medical background and relied on me heavily for my input..the only time I felt frustrated and not listened to was when we had 'locum' doctors I used to dread having to deal with them ... my mom did have bowel movement problems throughout, I think with this awful disease because it can effect the whole of the digestive tract its just an inevitable side effect, but like I say you do start noticing patterns, you will know when certain foods effect it...I used to keep a diary of bowel movements..nausea...food eaten/fluids and it really does help as this was a question I was often asked this is when you start seeing the patterns... you would be suprised how suddnely a week or two can pass without a bowel movement and you dont know...I did also originally kindof wonder what our macmillan nurse was there for UNTIL we had our first hiccup and it changed my entire opinion of them...they totally kick everyones bum when you see them in action its amazing...my advice honey...take each day as it comes .. look after and get through today, tomorrow will come soon enough..each day brings its own challenges its own rewards...you will have some amazing highs in all this as well...I think to be honest you are already showing your dad what a lioness you are what a strong lady you already are, you will end up his rock xxx baby steps honey

hugz

marie

xx

[marie souter]

cathy, lol just imagining you singing .. 'we shall not we shall not be moved' handcuffing yourself to the docs desk lol...

[Cathy]

Leila, you did great! Well done!! I'm really pleased for you and proud

Marie, you have no idea!! I still have palpitations now thinking of it .

Cathy Xxxxx