Hello I'm a newbie

Hi Wilma Flintstone and a warm welcome to the board from me. Good to hear that the tumour is safely in the bin now. When I was diagnosed my friend told me to take everything that I was offered which I did. I had a low dose of capecitabine along with radiotherapy before my op then a higher dose alongside an IV chemo afterwards. There’s a few people on the board who’ve just had capecitabine so ive attached a link to one of the posts below.

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/212023/starting-capecitabine-soon-tablet-form-only-for-6-months-what-s-your-experience-with-this-drug-been-like-would-love-to-hear

Capecitabine is given in tablet form and I found it to be pretty tolerable. Chemo can have a host of side effects and some are worse than others - the main thing I found with capecitabine was tingly feet so I made sure I kept them well moisturised with Aveeno with Shea butter. The nurses will keep a close eye on you and there are lots of pills and potions to combat any side effects. At the end of the day it is your decision so you would be able to stop if you were struggling. Personally I would give it a try because if you were to have a reoccurrence then you would always wonder ‘what if I’d had the chemo……….’

Sorry to hear that you’re struggling with the stoma. Is there anything in particular that you’re having problems with? The important thing in the early days is to measure your stoma every couple of days to make sure you are cutting the bags to the correct size otherwise you will get leaks and sore skin. There is another board for stomas (although you can of course post on here too!) but you might like to post there too or just read previous posts? 

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

Glad you’ve found us and feel free to ask about anything bothering you - there is nothing too daft or embarrassing!

Take care

Karen x

Thanks Karen,

Your post is really helpful. Yes i don't want to regret anything later so chances are I will be going ahead would just like to know what I'm facing first. Great tip re-feet thank you. I will certainly remember that. 

The stoma, I do have very sore skin, could be an allergy to the seal or bag but also I am experiencing leaks under the seal, I've been checking my cut sizes with the stoma nurse and they agree they're right but I'm still having problems with leaks and sore skin. They said it's going to take time to get the right fit, find the right bag.  I'm persevering but it's rather painful. 

Stan (My stoma) seems to be rather active at night, unfortunately. I empty before bed but have to get up in the night and by the morning it is full again. This may be normal... I've no idea? 

I will look at the links you've sent through, thank you so much x

Hi , I  , came round from surgery 2 1/2 years ago with a permanent stoma . To be honest I was devastated, I was in denial . 
I found it really difficult at first , but was coping with infection in incision and chemo too. I decided without it I wouldn’t be here so it saved my life.

I forget I’ve got one now to be honest , no problems ,I can do a change in a short time . Sometimes get a little sore around stoma but use some calamine lotion which soon clears it up. It took a while to work out what foods to avoid . X

That's really good to hear Deblorriane. I'm glad to hear you forget you have one after that rocky start. That's fantastic.  I still have lots to learn clearly.  Thanks for the lotion tip :) x

Yes just pat it on to sore skin, wait for it to completely dry before attaching bag. X

Hi again Wilma Flintstone. Yes it can be a bit trial and error finding the right bag but hopefully your nurses will persevere for you. I liked the salts confidence with aloe. I also used some little rubbery rings which you can tear into say quarters and put round your stoma before you put your bag on - my stoma was a bit floppy so I used to struggle getting the bag up close. You can also get banana strips which you can use to add extra ‘stick’ to your bag.

Yes my stoma (Lily the Ileostomy) was a night owl and I used to get up every couple of hours to empty the bag. You could try immodium/loperamide to slow the output down or try eating earlier or having your main meal at lunchtime? If your output is very liquid then things with gelatine in can help like jelly babies, wine gums, marshmallows. It is still early days too so hopefully things will start to settle down soon x

Hi Wilma

Although older, I'm same as you I had my LAR with a temporary ileostomy on the fourth of August, that seems so strange the day I was having my operation was the day you had that devastating news.

Initially I was home too soon and my stoma  was shrinking and not looking good, I awoke to a very sore leaking mess.

My soma nurse saw me and luckily for me she changed my pouch to a convex with belt and as I was sore she surrounded my poor stoma with an Eakin slim.  She said that she would give me six then all would be fine.

Well I have found that using the slim as a protective barrier from my output and the convex pouch with big knickers ( the belt can be another thing to worry about) has given my stoma the time to develop and my skin to heal. it’s given me confidence to begin doing the things I enjoyed. I’ve got it on prescription with the pouches.

I researched how to apply it, as you know it’s so difficult to learn from watching a stoma nurse at the angle we tend to be at especially as she tore it up. I have found that I leave mine whole warming it first before removing the film then shape it slightly smaller than the stoma pouches cut.  I then carefully apply it very close to my stoma, then the pouch. 
I find this really works for me and may be worth you researching and asking your stoma team.

I really hope this helps.

I haven’t been offered chemo, maybe because I am sixty six, and he felt he’d got it all, however it was a maybe before the operation. 
I like you would be finding out as much as possible and like you I would have probably have gone with it.

I think we have to throw every weapon at cancer.

They have asked me to join a research programme which I have accepted, hopefully to find a dna type match that will stop this type of cancer for future patients.

best wishes

Arstie

Hey Wilma, my mam had a Colostomy bag fitted and experience leakage at nights too. She always changed her bag before bed but always had to empty it through night, Bertha, her name for her stoma was always very active at night times. Try having your last meal a little earlier than usual and see of that helps. As for the soreness, Bertha could get a bit sore too, my mam seemed to think it was from the leakages too. When you cut your bag to the right size make sure you rub your finger around where you've cut the plastic coz it can be a bit sharp the part you put round your stoma. Just use your thumb to rub around the circle,. I'm sorry I can't be much more helpful. Also  try laying on your back when you fit the stoma bag into place, so there's no creases or ridges in the seal. Sending you my love. X

I use convex bags andf fnd they fit really well.once your stoma has stopped shrinking you can get precut bags from your supplier which saves loads of time and faff.even after two years I find I need to empty "fred" in the night.I think it is just one of those things.

Changing the bag does get easier and only takes a few minutes if you keep all your supplies organised in one handy place.

All the best with everything.

Kath

Ps.i had capecitabine but with oxaliplan so cant help there.all I can say is I have come out the other side in one piece

I meant Oxaliplatin.spelling mistake.sorry.its those funny fingers after chemo which play havock with screens.