Tummy trouble.

[Litchick]

Good morning ladies this is my first post and I would like to introduce myself. I’m 63 diagnosed August 2028 stage3 and doing ok- ish on Carbo/taxol & de-bulking hysterectomy in November. I’m very nervous to raise this in my first post but I hope you will understand. Has anyone experienced severe diorhea that results in accidents and do you have any tips for managing it please? I am taking Imodium as advised by oncology team but my bowel is not behaving well at all and I am embarrassed and scared by this lack of control. Thank you.

[Katmal-UK]

Hi Litchick Welcome to the forum (a place nobody wants to be). Trust me when I say you can discusss anything here! I have had experience of what you are experiencing so know exactly how you are feeling! I found (still find tbh) that I made a mental note of what caused/causes issues, for instance if I eat spicy foods, or say onions/baked beans then I know that the next day I could possibly have 'issues'. I hope your treatment is going well. Hopefully one of the other ladies will be along with some words of wisdom to help. Big hug, Kathy xx

[Lindaura]

Dear Litchick,

I suffered from Diarrhoea from the start of my illness until about 3 months after I finished treatment. It was my first symptom.

Fortunately, I only had one accident and I was home and close to my toilet and my washing machine at the time.

Only after I was diagnosed did I start taking Loparimide.

I would take one after each loose BM, until I settled and then I would take one in the morning and one at night, which kept me regular.

My BMs are not like they were before my illness, but I am okay and pretty regular now.

If you can get it under control, it is definitely a better situation than constipation, which always comes with the Ondansetron that I need the first mornings after infusion day.

I am on Carbo and Caelyx right now for my first recurrence and have not needed the Loparidine at all, thank goodness.

Hope this helps,

Laura

[lynn6156]

Hi and welcome!

I haven't had taxol or had the side effects you have from the chemo - but I've had a lifetime dealing with crohns disease (an inflammatory bowel disease) and the end results are the same even if the cause is different.

I'd like to agree with the other ladies. Keep an eye on any foods that might contribute to it - it could be spices - for me it's always raw food like lettuce. And secondly make friends with Imodium. If you have to wait for a prescription you can buy it in supermarkets or the chemist in the meantime. Tesco own brand is the same drug.

Also remember to drink lots of fluids. They are important on chemo and doubly important if you have dire -rear (sorry shouldn't really joke but love the word play and its a bugger to spell anyway).

Lynn

x

[shortfriend]

Hi, I am fairly new here as well so welcome to a supportive group. Apart from the advice already given I found it helped to keep a food and drink diary. Also found the always incontinence pants for women are not to bad to wear and easy to carry spare ones in bag and you could also get a disability key for public toilets if you don't have one.

Hope you improve soon.

warm wishes

short friend

[Roobarb1]

Hi & welcome! I had something similar during radiotherapy, and was given a special diet, which I called the cake diet. It was things like white bread, cake scones, crunchy nut cornflakes, very little fruit or veg. Basically anything healthy seemed to be banned!

The other good tip I had was given to me by the RT nurse - jelly babies, she told all her bowel cancer patients to take them when they had diarrhoea as the gelatine in them sort of gels everything up (or something). It seemed to work! I also had acupuncture which was very good but think you can’t have that if on chemo.

Good luck, it’s a horrid symptom but there are lots of things that can help (and jelly babies are a lovely wee treat anyway 😀) xxxx

[Orsolini]

Welcome to the club. I had the same and control by avoiding all raw food. Didn’t know about jelly babies- yum!

[Caroles1]

My onc put the fear of g.d in me saying that if I didn’t go regularly it may lead to sepsis, so ,quite frankly I would rather be the the other way.

What goes in must go out and if it doesn’t I am one grumpy c.w😳xx

[Hidden]

I think the OC does mess with that department. From almost the start of treatment, I realised I no longer knew what would actually happen when I went to the loo. This was particularly in relation to wind and actually producing something.

On my last chemo I had dreadful problems with diarrhoea, averaging about 7 times a day, with accidents. I found Loperamide had no impact. And what I ate didn’t seem to make any difference either.

So, I started feeling leaving the house was less risky when I decided to use always Tena pants outside and carry some spares.

Get a toilet card from Macmillan if you don’t have one.

A friend got me a RADAR key from the IBS society though I’ve not had to use it.

Otherwise, Macdonalds toilets are always open, unlike the other chains I’ve checked out.

Good luck!