Constant diarrhorea and stomach pain- any advice please?

[Sones]

Hello everyone

Although very new to posting anything on this forum I have followed your stories and have been given hope and inspiration from the topics I have read.

I'm 54 and was diagnosed with pancreatic cancer in September 2011 and underwent surgery (whipple) four weeks later. This was followed by six months of chemotherapy. It took over two years to get my diagnosis but thats another story.

I am asking if anyone can help with advice regarding constant diarrhorea and stomach pain. I have been like this ever since the surgery and I am now taking 75,000 Creon with each meal having gradually increased it over the last 12 month however, it's always the same no matter how much I take. These symptoms are causing me considerable distress. Do I have to accept that this is how it is to be for me from now on, or does anyone know if there is anything that can be done to eliminate or reduce these problems?

Thanks

Sue

[DRAD3]

Hi Sue

So sorry I can't offer any practical advice, other than to suggest you give the support line a call or email (assume you haven't tried that yet?) They will be better qualified to answer specific questions related to your particular situation. I emailed many times to get info in relation to my husband and they were quick to respond and gave me detailed and extremely helpful replies.

I do hope that these symptoms can be controlled quickly to ease your obvious discomfort and distress. It is completely unacceptable that you should have to endure this.

Keep us posted Sue and wishing you lots of luck and sending love.

Deb

x

[Sones]

Thanks Deb, no I haven't tried them yet. I have been referred to a gastroenterologist but still waiting for the appointment to come through.

Thanks again.

Sue.x

[laura]

hi sue, i guess you have had your pancreas removed, cos bri went in for a whipple, they actually got all the "bits" out to operate, they found tumour round msv, so sewn back up, brian is on creon 25000 and takes 3 with a meal [same as you] based on that, perhaps as you have NO pancreas, you need to take more?

my understanding is that you cannot overdose on creon, so you could try increasing the dose it may help you, bri has been taking them since may 2010 and is still taking them [and he still need reminding!!!!]

i remind him on auto pilot almost, oh! yes thanks he says, as though hes not had them before,?

hope this preamble might help, you must feel so frustrated someone did post on here about how she coped , if i can find the post i will get back to you,

wishing you all the best, with love laura xx

[laura]

hi sue, have found it, on the page of your post, look down the page and click onto Treatment and Side Effects, then go the 8th post down by suef titled, Faecal Incontinence.

surprise myself when my memory actually works !!!! lol having reread it i do think this could help you? be interested to know the outcome, good luck, love laura xx

[Sones]

Hi Laura

Thanks for the info, I have found the post your referring to. Unfortunately my G.P doesn't want to prescribe questran due to side effects. What is interesting though is reading the side effects of Creon which include diarrhorea and stomach cramps. I shouldn't moan I know as I am lucky to have had surgery. I know how awful this disease is, its taken me a year to come on this site and read these forums. It's a terrible disease and my heart goes out to all of you.

Hopefully I will get my appointment soon with the gastro consultant. Will let you know how I get on.

Take care

Sue.x

[PCUK Nurse Dianne]

Hi Sue,

I have just found your thread and initial query. I am wondering about your symptoms, and it does sound like you have a good dose of Creon. Are you taking the Creon with your meals, as some patients have been told to take it before meals, and this will not work, as it needs to be when you commence your meal or immediately afterwards. The other option is to break the capsule and spread the contents of the Creon on your meal. Are you also taking Creon with snacks? If you wish to email us with some more details at support@pancreaticcancer.org.uk or phone (020 35357099) we may be able to talk further.

Thanks, Dianne