Diarrhea and Problems Eating

[anita_m]

Hi Everyone, hoping you can help!

My mum has inoperable pancreatic cancer and has just completed her first cycle of GemCap. She has a bile duct stent and has had problems eating for the past couple of months. She's been taking creon to help her absorb fats. The past week she has had really bad diarrhea and its harder to get any food for her... She's taking Loperamide but it doesn't seem to be working yet. I don't know if its the fats in food or the chemo that are causing the problems but its really getting her down (on top of everything else). Does anyone have good suggestions on food ? Or anything else that might help soothe the situation? Any advice gratefully received. Feeling helpless and the dietician has been not much use sadly....

Thanks

[cheshire_cat]

Hi -- am so sorry to hear about your mum. My mum also has pancreatic cancer. She had the Whipples operation in March so has had the primary tumour removed but, unbearably, the cancer has already come back in her liver. She is now near the end of her first cycle of GemCap. She is also getting diarrhoea from the chemo but it isn't too bad and so far the loperamide has worked. If it's not working, I think you really need to tell the doctor/nurses involved with her treatment because maybe there's something else she can take which is stronger -- or they can adjust the dose of the chemo. Also, is she taking food supplement drinks? Mum has been on them ever since she was diagnosed because she started losing weight really quickly and they've really really helped. They're pretty revolting but if your mum can manage them, they're worth it. Apologies if you know this already but in case you don't -- most people take Ensure but there's one called Fortisip Compact which is much smaller so less intimidating to take but has a similar amount of calories in it. Mum takes it in shots, a bit like a medicine, throughout the day so she's not drinking it all at once. They've got protein in them as well as vitamins and minerals. I have spent months going round different dieticians trying to get help for mum and have been deeply shocked to find them not only very ignorant about pancreatic cancer but also unbelievably lacking in helpful suggestions. This is basically cancer of the digestive system, so how can advice on diet be so bad?

Mum is able to eat pretty normally at the moment with the help of Creon but before the operation she could hardly tolerate anything with any fat in it at all. For about 2 months she lived off the same food day in day out because it was all she could eat. I've no idea if this is helpful to you but here is a list of some of the things she could manage: chicken, white fish, rice, toast, crackers, cereal, boiled egg whites (I boiled them and then scooped out the yolks because they were too fatty), spinach, carrots, manouka honey, marmite, potatoes without the skins on them, nectarines. I trawled the supermarket for low fat foods and managed to find a very low fat carrot cake and some ginger biscuits that she could manage a bit of.

I don't know if any of this is any help -- but I so know how it feels to feel so totally helpless and not to get any answers from the people you expect to have them. All the very best to you and your mum.

[AnneD]

Hello Anita,

So sorry to hear about your mum.

Can I just ask a quick question?

How much Creon does your mum take?

I know it's very variable how much each individual needs.

I take 5x10,000 capsules with a meal and I have no pancreas. Some people take much more.

Best wishes,

Anne.

[anita_m]

Hi, thank you so much for your reply. I'm also so sorry to hear about your mum. It must be so hard.

I really appreciate your advice as it is just so lonely and isolating when you feel like you have no idea what to do. Although we have had some guidance, it seems that there is not a huge amount of expertise on that side of things. Its horrible to watch mum struggling every day and unable to eat. We seem to be trying lots and it gets us nowhere.

I will try some of your suggestions and hopefully will help ...

wishing you all the best

cheshire_cat wrote :

> Hi -- am so sorry to hear about your mum.

[anita_m]

AnneD wrote :

> Hello Anita,

> So sorry to hear about your mum.

> Can I just ask a quick question?

> How much Creon does your mum take?

> I know it's very variable how much each individual needs.

> I take 5x10,000 capsules with a meal and I have no pancreas. Some people

> take much more.

> Best wishes,

> Anne.

Hi Anne,

Thanks for your reply. She currently takes 1 x 25000 tablet with small amounts of food (ie breakfast cereal, a croissant etc) and then 2 x 25000 for a larger meal. Although, in fact, her meals are all pretty small. Lately she has found milk seems to exacerbate things. Perhaps taking more may help then?

[AnneD]

Hi Anita,

I'm not really sure I'm afraid.

Your mum is taking the same as me and I did wonder if she was taking less.

I take 5x10,000 with a meal and she takes 2x25,000.

It might be worth her trying a bit more if she can manage it.

I haven't been on chemotherapy myself but have no pancreas at all.

I hope the eating suggestions offered above help your mum.

Best wishes,

Anne

[Suead70]

Hi,

I'm really sorry to hear about your mum.

I don't know if this is any use to you, but my dad is 81 and was diagnosed with inoperable PC last August. He is receiving palliative care only and since October he has had two separate stents fitted. Around Christmas he was suffering really badly with sickness and diarrhea. We had absolutely no idea as to whether it was a symptom of the PC that dad would have to live with or not as nobody had explained to either my dad or any of his family about what to expect symptom wise. We were absolutely desperate on Xmas day as dad was constantly having diarrhea and there seemed to be no let up for him. As a last resort we contacted a chemist, to see if we could at least get some pads for my dad as it was making him really distressed. We explained about the PC and he advised that dad might find it helpful having things with pectin in, such as jam, marmalade etc. We tried giving dad just a bit of pectin containing foods each day, such as 'no bits' jam on toast, or jelly and I have to say it did seem to work as the diarrhea stopped and he hasn't had any since. However, I can't be 100% it was this that helped and I'm not a health professional...it may even have just been a coincidence, but that said it might be worth you speaking to your mum's GP etc to see if eating things with pectin in would be okay for your mum to eat and whether it may help.

Unfortunately, we have found that different things have affected dad from one day to the next. He seems to have had it all - pain in his back when lying down; being sick; having diarrhea and we didn't know what to do, or who to turn to for advice. That's why I joined this forum, to try to find out as much as I could, which has really helped me when speaking to his GP, the hospital etc and eventually with different medication: creon, sickness tablets, painkillers dad started to feel better in himself and he had 2 months where he was 100% free from all of this and felt so much better. Unfortunately dad has recently been re-admitted to hospital and we have now been told he has a tumour on his brain. But that said, I am so grateful for the 2 months where he was sickness/pain etc free as we have been able to get out together and visit the seaside and loads of other places. He loves the countryside and when we were travelling home from a day out one day we passed some hills and he sighed and said to me "Those are my beloved hills and if I could, I would live there". In that split second he looked so happy, content and at peace....I will never forget that and even in the face of such horrible circumstances, I wouldn't give those two months up for anything....

I am thinking of both you and your mum.

Best Wishes

Sue

[anita_m]

Hi Sue,

Thank you so much for sharing your experience and I hope that your dad is doing as well as can be expected. I will definitely see if I can follow that advice and get some progress. Really appreciate your help.

Anita

PS Apologies for the long delay replying - we have had a difficult month xx

[Suead70]

Hi Anita,

Sadly my dad passed away on Friday, but I know that my dad would say that if by sharing his experience it has helped your mum in any way possible then he would be happy about this....because that was my dad...eternally positive!

He was forever telling jokes and his catchphrase was "down and out, and still reeling 'em off".

I know it's hard for you at this time, but if my dad could, he would say to you and your mum...keep positive, take one day at a time and that's what I hope you can do.

I truly wish you both the best

Sue

[lynbo]

Dear Sue

Sorry to hear about your Dad, my thoughts and prayers are with you all, I stumbled across your post, but I'm sure I speak for all of us on here in saying what sad news it is, and live to you and your family

Lynne

Xxxxx

[AnneD]

Dear Sue,

I'm so sorry to hear your sad news but I can't help remembering what you wrote in June:

Those are my beloved hills and if I could, I would live there". In that split second he looked so happy, content and at peace....I will never forget that and even in the face of such horrible circumstances, I wouldn't give those two months up for anything....

Sincere condolences,

Anne