New member

Hi Carog - oops, just replied to you within the bowel cancer forum, but I think I should have replied here. Have copied my reply:

I was diagnosed with rectal cancer on 23rd December and had a colostomy 6 days later (they let me have Christmas first!). I was completely overwhelmed. The good news is that now everything is absolutely fine, but I wish I’d had more warning of the potential difficulties at the beginning.

My stoma didn’t start working until the weekend, and the stoma nurses don’t work at the weekend or on New Year’s Day. The ward assistants were lovely and did their best. I woke up on the 4th day covered in poo, it was awful. It had suddenly started working with diarrhoea and had leaked everywhere. There was such a lot to learn: measuring the stoma, marking up the bag, learning how to cut the hole, which wipes to use for cleaning and drying ... at first it took me at least 20 minutes. Post anaesthesia brain fog didn’t help. Then I would discover it hadn’t stuck, or I’d cut through the back of the bag, or it was already leaking - and I had to start all over again. Very upsetting.
BUT, worry not! Practice makes perfect! A few weeks later my stoma had stopped changing size, so no more measuring; the stoma nurses visited me at home once a week for the first few weeks and were wonderful, very reassuring. I was given lots of different types of bags to try.  Now I know what I am doing and it takes me less than 5 minutes once a day to change my bag. 
I am nearly through my 4 cycles of Capox and I can honestly say that I am hugely grateful to my stoma, because I have had weeks of alternating constipation and diarrhoea and I don’t have to sit on the loo - my stoma and bag manage it with no problem. I think I was unlucky to have such a difficult time, but I got through it and am now genuinely happy to have my stoma.
Best of luck (and try and get it to start working on a weekday!!) x

Dear Veggie Lady, I'm now 10 days since my resection and new stoma. The stoma nurse came twice during my hospital stay because of the Spring BankHoliday  weekend. I didn't feel it was enough but at the same time I wanted to go home because the hospital was so noisy and they woke us up at 5.20 to do blood pressure, then drugs then breakfast.

I'm going to see the stoma nurse at hospital today to get more advice. I'm not getting leaks but my skin is sore at the join so I'm trying to cut each bag a little tighter.

As far as diet goes I'm sticking strictly to the advice booklet I was sent away with. I feel quite restricted as it is the opposite of what I normally eat, over cooked veg as opposed to big bowls of fresh salad and part cooked veg.

I just wondered when does the stoma stop changing size and when can I start eating more normally ?

Best wishes Carog

Hi Carog, 

I completely sympathise with wanting to get out of hospital - they are very noisy places overnight! And bad luck about having the bank holiday during your stay which means less stoma nurse visits. Are they visiting you at home? My stoma stopped shrinking after about a month (it is now a neat 20mm circle, about half the swollen oblong shape it started out as). It still occasionally gets about 1mm bigger so I am not ready to order pre-cut bags yet. I hated having to measure the stoma and found it difficult to cut the bag accurately but now I can cut it in seconds, it does get easier I promise!

regarding diet - I had had colostomy not an ileostomy, so not sure we would have all the same issues. As a vegetarian I found it very difficult on the low fibre diet. But I have gradually introduced more vegetables and I do try to chew more. Over 4 months since my op and I am still not brave enough to try a veggie stir fry, but a few weeks ago I tried broccoli and cauliflower and had no problem. But I have to admit I cooked them for longer than I used to. Even peas get an extra minute in the microwave. One day my stoma felt a bit tight and it turned it it was expelling a chickpea which hadn’t been chewed properly!  I could feel it, but it wasn’t really a problem. I think you will know instinctively when you can introduce new foods. I was very scared at first and had to deal with lurching from constipation to diarrhoea, but most of that was due to my chemo. As my digestive system has settled down I am daily getting braver and eating more like I used to, including lots of lettuce - and I had a lentil curry the other day, which was fine.  Not completely there yet, but definitely getting there. 
Very well done for getting through the op and starting to recover. It is a steep learning curve, but you are on your way and it will get better and things become second nature very quickly.
re skin sore at the join - I had a bit of that at the beginning and they gave me some barrier cream wipes (which soothe the skin and don’t stop the glue sticking) which did the trick in a couple of days. At one point I was also told I had cut the hole too small which also causes irritation. 
Best of luck, you will get there xx

Dear Veggie Lady, Thanks for your advice. I think I need to be braver in what I eat. I have 5 grownups ( husband plus 2 children and 2 partners)   living with me who all want to help so I'll ask them to vary my diet a bit more.

My stoma nurse was very helpful yesterday and cut me a new flange and gave me some powder to treat the slight infection at the join. 

On Tuesday 11th I will find out if I need chemo. It is such a roller coaster being diagnosed with cancer.

Best wishes, Carog

Dear Veggie Lady, Thanks for your advice. I think I need to be braver in what I eat. I have 5 grownups ( husband plus 2 children and 2 partners)   living with me who all want to help so I'll ask them to vary my diet a bit more.

My stoma nurse was very helpful yesterday and cut me a new flange and gave me some powder to treat the slight infection at the join. 

On Tuesday 11th I will find out if I need chemo. It is such a roller coaster being diagnosed with cancer.

Best wishes, Carog

Hi Carog. Like Veggie lady  I have a colostomy. My stoma nurse told me before my surgery that I should be able to eat the same food that I had before my surgery. The only thing I found I had a problem with was sweetcorn, which was one of the things she said might be a problem. That was early on and I don't seem to have a problem with it now. I think it is a bit different with an ileostomy though. Your stoma nurses will be able to help with any questions you have though. 

Google lu k with your recovery.

Love Kim xx 

• Thanks for your reply , so comforting to hear other people's stories xXx

Dear Veggie Lady, Can you explain what having chemo involves in term of timings and self-isolating ? What is a cycle ? 

I find out on Tuesday if I need chemo and don't want to be too surprised when they tell me. 

I fainted this morning after I'd got up and hit my head, luckily my husband was in the next room and heard a thud and came and helped me up, it was a bit scary as nothing like that has ever happened before and I had no warning.

Maybe it was low blood pressure or dehydration.

Best wishes Carog

Hi Carog, how lovely that you have so much help and support at home, it must be such a comfort. I am slightly different to you because I am having chemo before the op to remove my tumour. They are trying to stop it spreading and hopefully shrink it before the op - because it is “bulky” and very near the end of my rectum. It had spread to lymph nodes but not beyond the bowel. I had 4 cycles of Capox, which finished 10 days ago, Every chemo is different, but for me each cycle was an infusion on the chemo ward on day 1, then 2 weeks of tablets, then a week off. I did this 4 times.

regarding fainting - I had forgotten until you said that I fainted in hospital the first time I tried to get up, they put it down to low blood pressure, But I had also forgotten that for a few weeks after my op I had to have a small bite of a plain biscuit before I got up, even though I was never hungry, because it stopped me feeling woozy when I got up. I put it down to low blood sugar, because I wasn’t eating properly. One biscuit would last me 4 days! I don’t have to do that any more. And yes, everyone always says we must drink more, dehydration can be very dangerous.

I don’t know but I imagine they are going to tell you the results of your op tomorrow eg if they have found any stray cancer cells in lymph nodes then they may recommend chemo to “mop up”, which is quite common.. The chemo does affect your immune system, so I “self isolated” for the whole 12 weeks, apart from people in my household who were also very careful. Take someone with you tomorrow and a list of questions - there has always been a colorectal nurse with my oncologist and they are both very patient and kind. They should give you lots of printed information - look it up when you get home, the Macmillan site and the NHS sites are great sources of information,

I had my stoma op on 29th December and started chemo on 27th January - but it was delayed a week because someone on my ward tested positive for COVID so I had to self isolate first. They have to wait until the stoma op has healed.

I had a scan last week after my 4 cycles and was told I had an “excellent response to chemo” and that my tumour had shrunk! Yay! I will find out on Wednesday what they are going to do next - the original plan was 5 weeks of chemoradiation but it maybe less if it has shrunk enough.

Very best of luck for tomorrow, I will be thinking of you. Fingers crossed you won’t need any chemo, but if you do you are not alone and it is really successful for lots of people.Try not to worry - easier said than done, I know.  Let me know how you get on and GOOD LUCK!  xx

Dear Veggie Lady,

So i have one out of 24 lymph nodes with cancer. It seems such a small number but my consultant and the MDT have recommended Chemo. I feel slightly upset but it was what I was expecting so just have to get on with it.

I tried your advice re the fainting and it is working.

Just have to get my head round what the chemo means now !! I'm booked in Monday to see the Oncologist.

Best wishes

Carog