Controlling chronic diarrhoea

Hello

I have had chronic diarrhoea since starting the accorfil jabs I have to do at home for a few days after chemo (I've had 1 session so far). My nurse suggested immodium and I haven't been offered anything else. I've got appointment Monday with oncology and will raise it as, like you, I've found it really limits what I can do and it's been two weeks now (some days worse than others). the immodium helps but if I stop the diarrhoea with them  then I feel queasy instead. 

I'm sorry you're going through it too. It's not nice and it's very tiring - not to mention the amount of loo roll I'm getting through! 

Wishing you well. Xx

Thank you.

It sounds like we are taking the same remedy as I believe that Imodium is a brand name for the drug loperamide.

If you are feeling queasy, they may prescribe metaclopromide for you. I don’t know whether this has been mentioned, but they give both alongside the Abemacicleb. 

l want to be able to control the diarrhoea in an ongoing way so I can go out with a high degree of confidence that I am not going to have an attack of diarrhoea while I am out.

I do find that Sudacreme on your bottom is a great barrier cream to guard against it getting sore!

Hi Hedera I’ve finished my 2 years of Abemaciclib now but I well remember the early days and the symptom you’re suffering. I managed by waiting until I’d “been” however it was, and then taking Loperimide, depending on how it had “been”. 

Excuse the detail but..if it was ok, fairly normal, I took one Loperimide. If it was loose, then I took 2. That seemed to work for me until I had a dose reduction from 150mg, to 100mg, which sorted everything out.

Wishing you well with the rest of your treatment x

Thank you. 

I'm concerned that the diarrhoea might reducing the effectiveness of other meds that I have to take, as well as being unpleasant. 

My appetite is ok - is yours? I just find I can't keep in what I'm eating.

If I get anything helpful from my meeting with oncology on Monday I'll let you know.

Hi Heders, 

your pattern of diarrhoea sounds similar to my own. I’m on 10th cycle and still on 150mgs. I’m on holiday in Ireland at present and for the first time I’ve been taking regular prophylactic loperamide as we have been out every day and I’m unfamiliar with the toilet situation. Previously I have taken loperamide mainly after diarrhoea but occasionally prior to diarrhoea on days out travelling and such events. So far so good on this holiday but loperamide pushes me towards constipation so once home on Monday I will revert to my normal routine of not taking it so frequently. 
I don’t think I’ll have full control of bowel “events” until I finish this medication and I’m sure in the future I’ll laugh at the time I was in a public toilet for so long the time switch light went off and I was sat on the loo in pitch darkness trying to find the loo roll, toilet flush and door lock. It was only on leaving the cubicle did I trigger the lights to come back on. So far that has been my worst experience but I’m not half way through yet. 

Thank you. I haven’t tried just taking one tablet in the way you have described. That sounds like it would be worth experimenting with. 

My appetite is definitely affected. The drug I am on can make you feel nauseous, but I also think I am becoming a bit scared to eat as it will bring on the diarrhoea. I am also trying to anticipate what I may be okay with eating. Although healthy eating is all about whole grains and lots of fruit and veg, et cetera, I think this will take me back towards a more processed food diet for a while. I find I can eat a few spoonfuls of plain cornflakes for example, but would be nervous about having porridge or muesli. 
My latest blood test showed me to be low on potassium, which I believe can happen with chronic diarrhoea, but I’m sure your oncologist will be keeping a lookout for things like that. 
I hope your meeting goes well on Monday

It is useful and interesting to hear about you taking loperamide in a preventative way. And it’s brilliant that you are away on holiday!
I think I need to bite the bullet and experiment a bit too. Constipation is definitely not what you want, and I can see how the situation would easily turn towards this.

I too am expecting that bowel habits will be affected as long as I am on this medication. I am getting an emergency kit together should I have uncontrollable diarrhoea when I am out and can’t get to a toilet. Hopefully it will never be needed, but it may give a greater degree of confidence. 

Thank you. If anything helpful comes of it I'll let you know. 

I was advised by nurse to eat plain food when diarrhoea really bad like rice just cooked with a chicken or veg stock cube, plain pasta with just a bit of cheese, rice cakes, mash, plain porridge. She also suggested drinking full fat milk to top my protein up. For a few days that's all I fancied but now I'm back eating a more or less normal diet although I've kept away from spicy stuff for now. And I'm limiting my fruit intake to be on the safe side as I love fruit and have a tendency to overdo it.

Friday I took immodium all day as I had to go out and couldn't risk not taking it. It worked and yesterday I didn't have any episodes and didn't take any immodium so maybe it's done the trick for noand I can have a few good days before next chemo. We are going to try a pub roast today

I hope you are managing to enjoy your weekend.

Hug to you. Xx

Saw oncologist this morning. Much nicer than the one I initially saw. I've asked if I can transfer to her and she has said yes.

Can't alter the steroids or the jabs as absolutely fundamental to my treatment. 

She explained chemo causing diarrhea and not the accorfil jabs. Said to take immodium and not let it continue as she doesn't want me to lose weight or be dehydrated. Got to eat lots of full fat high protein foods too. 

She explained my chemo regime particularly harsh as I am on 4 chemo drugs to tackle 3 different cancers so I'm not just being a wimp as it is very harsh regime. 

She will be able though to lower the chemo dose a little from next session so that should help with nausea and diarrhea. She's also going to give me a better anti sickness drug. 

She said at the moment there is only 10 % chance I will need radiotherapy but it very much depends on the analysis of the tumours post operation. 

She was great and I,m so glad I pushed to speak to someone.

So it looks like immodium is the answer and we should take it however we need to for stopping the runs.

Hope you are feeling better today.

Big hugs 

Xxx