Quality of life affected by diarrhoea

[JCW]

Hi everyone

This is my first time posting.My Dad has stage 4 inoperable pan can.

His main symptom which is really affecting his quality of life and getting him down is diarrhoea.He can have multiple episodes of this per day. It is unpredictable so he is frightened to leave the house and has now lost significant amount of weight as a result.I'm so sad for him and desperate to help in any way I can. The severity of this issue doesn't seem to have been acknowledged by healthcare professionals and there doesn't seems to be anyone giving advice specific to him. He takes imodium daily and creon. I'm wondering if anyone has had similar experience and if they can share any advice.I'm wondering if he needs to up his creon intake. He takes 4 with snacks and 8 with main meals(25000 strength).Do other people take higher doeses than this ? 

I'm also keen to try and help with some weight maintenance. All he has been advised is to eat things high in calories and has unfortunately not had any consultations with a dietician. I've been looking at fortifying foods by adding cream/whole milk/milk powders etc but some advice suggests avoiding these as the high fat content can worsen the diarrhoea....is this anyone's experience??

also would people recommend pro cal powder and what dose and calogen shots ?

Sorry for all the questions but determined to try to make things better for him xxx

 

[Gaffer]

Hi JCW

Im sorry to hear your dad’s diagnosis. My husband was diagnosed with stage 4 in Aug 19 and had similar issues with diarrhoea. He too took Creon but it took some time to get the dosage right. Certainly you cannot take too many ( I would say more is better than less)  but it’s very trial and error and takes some time to get to a point of the diarrhoea easing. There are also some different anti diarrhoea meds that can be prescribed so

might be worth asking the medics about this. I did fortify my husband’s foods and tried to add calories any way I could. This was a bit more complicated as my hubby had a duodenal stent but use full fat everything- full fat milk and add to that

marvel powder for even more calories, milkshakes with ice cream

added, cream in mash potatoes and grated cheese, condensed soup is good as more calories but if too thick add milk to that too. Never found that they made the diarrhoea worse. You can buy some (Amazon)  or get on prescription fortisip drinks, and there are some deserts nutricia fortcreme which are little pots but high in calories. Please give the nurses at pcuk a ring- the’ve a wealth of knowledge. You might need to keep pestering for a dietician - we unfortunately had to but you really need a dietician that specialises in pc, which we didn’t get. I hope that you find something that dad will

like and can tolerate and I wish you all the very best .

 

 

 

[Tim]

Hi JCW

I am in the same position as your father, that is I have inoperable stage 4 Pan Cran, and like Gaffers husband have a duodenal stent fitted.

I would say that it has taken 8 - 9 months to get the creon dosage approximately right for me  with the help of the dietician i'm about there but still get periods of diarrhoea but nowhere near as badly and take loperimide to counter it. I take 5 creon with a main course and 4-5 with subsequent courses, snacks. One of the best bits of advice I received from the dietician was to split the creon tablets intake during the meal, so rather than taking 5 at the beginning of the course I now take 3 at the beginning and the remaining 2 towards the end of the course. I believe that this has helped me tremendously with weight gain etc.

Perhaps with your father as with me certain ingredients are the cause, for me ginger is a big no no as it is a natural laxative, I also avoid coffee now and eggs are out as well plus a few other things,  also Fortisips set me off almost instantly for the loo.

After working out over the past year what does and doesn't effect me I can now go out without worrying too much about where there is a loo (although it's still at the back of my mind) and I now enjoy a relatively normal diet.

I hope this is of help.