Capecitabine and illeostomy?

Hi 

Welcome to the forum . Great to hear surgery is behind you .

My mum did not have an ileostomy so I can’t assist . But I wondered if you might like to chat it through with the Macmillan nurses on our helpline . 0808 808 0000. 
We also have an forum for stomas 

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum

If you use the search function on the top right hand side you can have a read from previous posts about how other people have managed it . There is lots of information from previous posters .

Others will hopefully pop on and help you but just thought I would link in the other forum for you to have a look at if you feel it’s appropriate.

Take care ,

Court 

Hi , I have just had nearly 6 weeks of oral capecitabine with radiotherapy with an ileostomy, I found my output to be more watery but used laperomide when needed , tweaking the doses when needed allowed me to take the capecitabine and other medication without losing valuable nutrients, I’m sure you know it’s very important to keep hydrated and get as many calories in as you can while on the medication and laperomide helped me so much to do that while feeling sick and not wanting to eat , I also had ensure everything day and used still sports drinks to compensate for salts / electrodes lost due to watery output , hope this makes some sense and helps slightly xx

Thanks, that’s helpful to know.

Thanks. I hadn’t though about using the laperomide. 

It helped me lots , my chemo brain cannot spell lol , I meant loperamide

Hi Sassyj , I wondered how you got on with your treatment. I'm starting my Chemoradiotherapy on 2nd June and I'm on Capecitabine alongside the radiotherapy for 6 weeks. I've got a loop iliostomy and was a bit apprehensive about the side effects. Geoff 

Hi Geoff. I am on ‘mop up’ chemo at the moment and it is a combination of different drugs - CAPOX. The dose on this chemo is twice the amount used when I had chemoradiotherapy. And on cycle 2 I have had to stop the capecitabine for a bit. I am trying to restart but I am not sure it is going to be manageable for me. I’ve now had 5 days of watery output. I didn’t have the illeostomy when I had the chemoradiothery so it is hard to compare. I had diarrhoea before I started the chemoradiotherapy anyway because of the cancer and didn’t really notice a difference when on the capecitabine. I would say it’s important to sip drinks all day in the effort to stay hydrated. Good luck Geoff. I found the radiotherapy can make you very tired so rest when you need to.

Thanks Sassyj , great advice, I'll try to keep up with the water intake. I've got 5 or 6 weeks of the Chemoradiotherapy then Rectal removal after a rest period. All the very best for your treatment, I hope all goes well. Geoff 

Hi Sarah,

I've got an ileostomy and started on capox. I had a very watery output despite taking loparamide. I had to go to the hospital for fluids. As capecitabine is known for causing diarrhoea, my oncologist said it would get worse so switched my chemo to folfox. It was so much easier. I find it really hard to take tablets.  After the intravenous chemo, I had a pump attached to my picc line that I went home with. This was on for 46 hours. The district nurse would come to disconnect it and flush the picc line. The loparamide was increased and I was also given codeine to help with the output. I was a bit freaked out initially but it was absolutely fine. Although it's called a pump, it's a similar size to a can of coke with a thin tube going into the picc line. The nurse made a cross body bag from a bandage. I felt like Robocop, bag on one side, pump and picc line on the other!

Take care,

Cheryl

Thanks for this Cheryl. My stomach feels tender and I have managed to restart the capecitabine. I am asking my team to switch to Folfox. I’ve heard it gets worse and If I’m like this now I can’t imagine it will get any easier.