I had my first chemo session on May 21st and have been working my way stoically ( I thought ) through various side effects of the Carboplatin /Paclitaxel infusion . Going to be every 3 weeks. Then the diarrhoea started. Took 1 Imodium ( on advice from hospitsl ) and it stopped. 18 hrs later it’s back. Took 2 Imodium and it stopped. Nearly 48 hrs later it’s back !! Took 1 Imodium … yes , you guessed .. it stopped and I was able to relax enough to get 5 hours sleep with a fresh colostomy bag and a puppy pad wrapped around me for security. Woke an hour ago with no poo issues.
I’ve had stool tests done and the diarrhoea is due to chemo … no infection. My question is how long will this last ? I’m trying to eat to keep my strength up but this will obviously affect the output from my stoma. I’ve tried having small low fibre “ snacks “ during the day but this leaves me feeling weak and wobbly. I’m making up an electrolyte solution each day and sipping on that.
Am I doing the right things ? Do other people get this constant on/ off with diarrhoea ? How do I eat / keep my strength up ? What sort of things should I be eating ? Very conflicting advice is given online.
Anyone else managing this side effect ? I would be so , so grateful for helpful advice. I’m doing chemo presumably to extend my life … but what life is this ? Stuck indoors with my elderly husband looking more and more knackered … going for the occasional 15 stroll hoping that I don’t get into a poo- mess.
Hi Gingerwinger
Diarrhoea can be really miserable. I am sorry you are having to contend with this.
I had the same chemotherapy as you for my womb cancer. I did have tummy troubles with it but they tended to last for the first week and then resolve.
It is good that you have had stool tests done that confirm no infection but have you had any particular advice from your CNS or chemo nurses about how to manage the diarrhoea going forward?
I had some really bad tummy issues during my radiotherapy and was told that sometimes its not just about the medication but how and when you take it. Sometimes one type may not give adequate control but another will- sometimes it can take a combination of medications.
My radiotherapist put me on loperamide 2 tablets x 4 daily and I was told to take these 30 minutes before meals.
I was also told to take ondansetron (the chemo sickness medication) as this has a constipating effect. I was given buscopan to help with cramps. From what I remember it was 2 tablets x 3 x a day. Lastly I was given codeine phosphate and the combination of these did really help.
I remember also being told that for some people fybogel can help as it adds bulk to the stools.
It may be an idea to talk to your CNS as to whether any of these medications or combinations could help you.
Diet is also important. I found low fibre, bland foods best. White bread, toast, crumpets, rice became a staple for a while. Anything acidic- like fruit juice was a no go. Nothing spicy. No fizzy drinks. Decaf tea. It was a bit trial and error. Dairy would set me off. It is important not to restrict your diet without checking things out first but these were things that were suggested to me and did help.
I also found smaller more regular meals helped. I remember being told that what goes in at regular intervals, comes out at regular intervals. For me it was the regular eating and the regular medication that helped. I was told that loperamide (imodium) can be taken differently under medical guidance. For normal diarrhoea it tends to be 2 tablets and then 1 after each episode- but with cancer treatment side effects sometimes it needs to be taken at regular intervals to help prevent the diarrhoea from occurring in the first place.
As a last thought have you a stoma nurse that could give some advice as well.
Jane
Hi Gingerwinger
In addition to Jane’s excellent advice, I am speaking about experience of diarrhoea with a colostomy, so I understand how hard it can be to deal with. When I suffered from diarrhoea during chemotherapy and was prescribed loperamide, I was told off by my consultant for not taking enough of it, or regularly enough-I was only taking one tablet when it happened, and not taking any more, and that simply wasn’t enough.
In terms of output, have you tried any of the usual “thickening” tricks? Things like marshmallows, jelly babies, dry crackers for example? It is a good idea to be taking an electrolyte drink, and small meals-with a colostomy, and food passing through our system quicker, nutrients are not absorbed as well as they were before, but you can quickly become dehydrated with bad diarrhoea. It’s best to eat a bland diet, with low fibre-maybe try and include something like porridge which can also help with thickening?
I’ve been there with the puppy pad wrapped round me in bed, and had some explosions where I was glad of it, but I sympathise with your predicament as it can be so difficult to manage.
Sarah xx
I’m really surprised you were told only to take one tablet when the diarrhoea starts-that was very different to the advice I was given, and I’m aware that others take a much more regular schedule of these. The worry, I know is of going the other way which could be much more serious than diarrhoea with the colostomy if it blocks.
However, I’d seriously ask your consultant again about the issue to check if the dosage needs amending, or if anything else could be tweaked for you. It can be hard enough to get out with a colostomy without the thought of a poonami to add into the mix!
Sarah xx
