Managing diarrhoea

[Happy36]

I have prescription meds (and nappies). Diarrhoea is a side effect of chemotherapy and radiotherapy.

Meds. help but not completely.

I live in a small flat and would say I manage to get to the toilet 60-75% of times - there is very little warning of an episode. It also involves crippling, sudden pain so sometimes l can't actually move to the toilet.

Eating small cups of cooled white rice 3 times a day. Any experiments with other food have not gone well.

I want to be able to leave the house eventually and not have diarrhoea run my life. Please please does anyone have any tips?

Have you tried Silicol? I have ibs and this helps a lot.
Good luck op x

Thanks, Farevalah.

I have Diosmectite powder (brand name Smecta), Racécadotril, and some "GANatura" capsules with aloe vera, limestone and nacolita. The powder is meant to line the stomach and the racécadotril/acetorphan sort of dries out your bowels, and the natural capsules slow down digestion. I think.

What's Silicol?

I am on methotrexate which is a low dose chemotherapy for lupus. I suffer with terrible upset stomachs as a result. The only thing that works for me is taking Cocodamol 30/500 (the strongest strength) before bed and it seems to bung me up for a few days. Sometimes it does go the other way into constipation and I have to have a few laxido sachets to get things going again. Not sure if that could be an option for you? Might be worth asking your Gp.

Thanks very much. Both my oncologist and GP are on holiday, but I can speak to another oncologist, or the pharmacist.

I'm just feeling pretty bleak. When will I be able to go out?

Having kidney pain, would this be related to the diarrhoea medicines ?

Codeine linctus is an effective treatment for diarrhoea but it’s addictive so should only be used occasionally.
Poor you - knowing there might be a sudden attack ruins everything. I hope your doctors find an effective treatment for you.

No advice but I just wanted to send you best wishes. That sounds so miserable to have to deal with. I hope you find a solution. Would the gp be able to advise on a temporary treatment while your specialists are on holiday? It might be advisable to see them if you have kidney pain? Best of luck to you.

Thank you both so much.

My GP is also on holiday. I have to go for an injection later (if I can get off the toilet, otherwise it will be nappy + everything crossed) so will try to ask at the pharmacy on the way back if I'm not too tired.

Have one more day of the current medicine then have to tell the other oncologist (mine's on hols) how it's going.

Have a scan tomorrow and am already having nightmares about shitting myself there.

That sounds very tough going op. Would any of the cancer forums be of any help? Maybe some other people on the same treatment as you may have some tops maybe?

Tips not tops!

Thanks Goodallsfolly.

Op google continenceproductadvisor as there are some devices that might help you.
I am sorry you are going through this.

Thanks andante57. In desperation, I emailed my chemotherapy nurse...and got her out of office (on holiday until 6 Sep.) and no alternative contact details.

I have been through this alone and tried to stay positive but this worsening, apparently unstoppable, and painful diarrhoea is having an effect on my mental health. I feel so helpless and embarrassed and frustrated. I cry a lot, both with pain and wondering when I'll get some control over my life back.

Going to Google those devices now, thanks.

No advice but . Stay strong @Happy36 you can do this. Unmumsnetty hugs.

Thank you so much QuarantineQueen and everyone. There is so much kindness here; it means a lot.

Another with no advice but couldn't read and run. . (I hope someone comes back from their bloody holiday soon for you!).

Sending another set of unmumsnetty hugs

This sounds rubbish, especially your lack of contact with professionals. When did your radiotherapy finish? I look after patients who have had pelvic RT and unfortunately the acute effects can last for up to 4 weeks afterwards. Chemo can enhance side effects. Patients have access to 24 hour telephone support.
I've not heard of those meds before, are you in the UK?
We would try regular loperamide and add in codeine if tolerated/needed.
It's pretty rough to go through and many patients feel that there's no light at the end. Worrying about your scan won't be helping either.

Hello again everyone and thank you so very much for the advice, kindness, patience, and support.

Last night the kidney pain crescendoed but eventually I managed to sleep a bit (took a painkiller and massaged myself). Today they are almost painless - I can certainly feel them but can't say they hurt. Have not drunk that much water as had to go for a scan and was very very worried about a diarrhoea attack. Have just got home and am drinking more now.

madamy I live in France. The care has been very speedy and everything medical done very well, but the level of information/communication has not always been great (I speak French fluently so not a language barrier), I think it's just my oncologist/his practice that is a bit overworked. They do help but you have to really badger them and insist, which I don't always have the energy for.

The other oncologist has emailed me a prescription this morning for loperamide and said to take it instead of racécadotril (the drug that essentially dries up the poo). But how does loperamide work? The prescription says to take it after each bout of diarrhoea?

Have got Loperamide now but unsure how to take it. Do I have to wait to have diarrhoea?

The directions on loperamide are to take 2 initially after diarrhoea then 1 after every subsequent bout of diarrhoea up to 8 in 24hrs (ie max 16mg in 24hrs). However, we often advise our RT patients to take them more regularly eg 2 tabs 3 times a day to try and regulate the stools. It's a bit trial an error though!

Thanks. I'm taking loperamide, no difference so far. Having stools (and blood and urine) analysed.

It's just so tiring. I just shit, clean, and shower on repeat.

You need to drink more and maybe ask for some steroids as well as everything else. Loperamide is useful but the less you drink the worse your side effects are going to be. Have you finished radiotherapy yet?

Thank you so much. Finished radiotherapy 9 days ago.

Am drinking 3 litres of water (often more) a day plus 1 or 2 cups of apple juice. I have to get up during the night to wee.

I will phone to ask for steroids on Monday.

Unfortunately, you're still really in the acute phase with regards to side effects. I counsel my patients that the peak hits around 2 weeks post finishing treatment, then gradually subsides over the next 2-3 months. This will get better, but please try and speak to your team to get better support. I'm not sure how it works in France but it's not unusual for me to admit someone with very acute diarrhoea to rehydrate and get on top of it.