how to help dad chemo-radiotherapy & colostomy bag

[Popskipiekin]

Hi does anyone have advice for how I can help my DF - and DM - through the next few months as he undergoes chemoradiation for stage 3 rectal cancer, then quite a serious op after which he will have a colostomy bag which may well be permanent if they have to chop out most of his rectum. He is nearly 70.
They have both been knocked for six by the news but are trying to be stoical. He has v good chance of survival so that isn't scaring us - but I know he is worried about how he will get through the treatment and doesn't know how he'll cope with the bag afterwards.
I live quite far away. How can I offer practical help in the next few months? What do you feel like doing when you're going through chemo/rt? does anything make you feel better/worse(!)? can anyone offer their experience of having the bag so I can make him feel better about this outcome?
Many many thanks.

I can't offer personal experience, only that of both my parents, one of whom has had RT and the other of whom had the colostomy bag.

Mum - colostomy was following emergency surgery for peritonitis due to burst diverticulum, so very different from the planned surgery your Dad will have. However, outcome pretty much the same, as although Mum technically could have had a reversal some time later, she chose not to - your Dad won't have that choice.
Living with the bag took some getting used to - things that Mum had done were to move into a separate bedroom (luckily our house had the space) and to have a shower and sink unit installed in there, so that she could clean herself up in private (en suite bathroom not an option).
Parents house also had a downstairs loo, with a small sink; a flexible shower hose and water heater were installed in there as well.
I don't know if things have changed now (probably) but a good stoma nurse is really helpful - one who can help your Dad get used to doing his bags by himself. Stoma bags come with different shape "holes" - some are round, some are oval, and some will fit better than others. The supplies used to be free, including the disposal bags (like nappy bin liners) and dry wipes as well as the stoma bags themselves. After a while, Mum just got used to dealing with it all, but she was very private about it and hated being out for too long.
Also, diet-wise, he will have to be careful about the sort of veg he eats - baked beans are out for starters! Anything likely to produce large amounts of wind (legumes are a nightmare for this) are not to be recommended, as the wind build up can break the seal on the stoma bag.

Making sure the skin is clean and dry before applying the stoma bag reduces the risk of "leakage" - something Mum was utterly paranoid about, especially the smell - hence all the cleaning stuff everywhere.

If there is any residual large bowel left after his op, it might "leak" a bit for some time afterwards - this is just the mucus that the membranes produce to help lubricate the anus for stool evacuation. But it can go on for quite a while!

Dad - had RT for prostate cancer. Very focused, but he still got a bit of "sunburn" (radiation burn), which he found aloe gel helped with. What got him was the fact that he started off feeling fine but after about the 4th treatment, he started to get very tired, really seriously fatigued. And it continued until he finished. At first he would try to work through the tiredness, but luckily he had a "cancer support group" and they told him to just give in to the tiredness and REST. So he did, because really, he had to!

Hope that helps, even though it's two different people.

Should have said - Mum got a stoma nurse automatically after discharge from the hospital - that's the bit I'm not sure about, whether it's changed or not, whether the NHS still provides that service (and the free stoma supplies).

ThumbWitches thank you so much!! My dad tends to be a bit head-in-sand about all the practical aspects but I know my mum wants to be prepared in advance. It is hugely helpful to get all that insider info about how your mum coped with her bag. The hose in the downstairs loo idea is very interesting. My parents already have separate bathrooms, lucky things , don't think they could do separate beds but they could probably make it work if that makes him feel better about things at first at least.

Re: RT - that's the first I've heard about the 'burning'. And it's good (well not really but iyswim) to hear about possible/probable exhaustion from RT too - will have to encourage my dad to slow down.

Hope your parents are both well recovered . Do you mind saying why your mum chose not to have the bag reversed? would it be very major to have a reversal? don't worry if you'd rather not say.

No I don't mind saying - Mum was very anti-hospitals (ha!) and couldn't bear the thought of another operation, especially as there was a reasonably high rate of reversal failure, which would have resulted in still needing the colostomy. So she decided not to put herself through it, just carry on with the colostomy. She had it for 10 years, but sadly died from bowel cancer a few years ago - it wasn't detected in time to do anything about it, partly due to her having the bag and not getting (or paying attention to) the usual signs, and partly due to her extreme reluctance to go to the doctor/hospital unless ABSOLUTELY necessary (which is how she ended up with the colostomy in the first place, through not doing anything about her diverticulitis!)

Dad is fine though - no lasting damage to the skin, and no recurrence of the prostate cancer - they keep checking him regularly, just to make sure.

The only thing I don't have any direct family experience of is the chemo - but your Dad will be talked through all that, I'm sure - depends on what type of chemo drug he has as to the likelihood of him getting sick, losing his hair etc.
If he does get sick, then they'll have advice on that too, I'm sure. If it's bad enough, he'll need anti-emetics along with the chemo.

Fingers crossed that it all goes really well for your Dad

Oh I'm so sorry! How incredibly sad for you all. You're so kind to give me advice. Life is very unfair sometimes. Best wishes to you and your dad.

Hi. For the 2nd time in two days....have a look at the brilliant 'Beating bowel cancer' website and forum. All the above is great advice but the forum and phone calls to the forum nurses will give you chance to ask as problems or queries arise.

Best wishes to you all.

I don have first hand experience but both my dad and mol have stomas. MIL has a colostomy after perforated bowel and emergency surgery. Dad had ileostomy after bowel cancer.
Dads surgery was to remove the tumour and damaged bowel. He was able to have keyhole. They said it would take about 5 hours but he was in theatre for 9 hours. It was agonising wondering why it had taken so much longer but we were told afterwards that this can be the case with keyhole Bowel surgery. The recovery was lengthy and painful. He was in hospital fur about 7 weeks. He had some real low points. He sailed through the chemo. He had a pit ( I think it's called ) line and used to go to be connected, carry it round for 3 days, get disconnected then have 1 week off. He tolerated it very well to the point that he went back to work during chemo.
This website www.colostomyassociation.org.uk/ is greAt for info.
Both mil and dads bags are different. Mil changes her bag once or twice a day as her output is solid. She changes as you would with normal bowel movements so her bag is empty most of the time. She still has a lot of large bowel left. Dad changes his daily but has to empty it every hour or so as he has no large bowel. The large intestine acts like a spin dryer and removes all the liquid so with very little large intestine dads output is very liquid and it is almost constant.
I

Zadoc is there a lot of it about? thank you for such a helpful site. I will try to speak to a nurse tomorrow - what an incredible resource.

Pud1 thank you so much for sharing your family's experiences. That does sound terrifying about the length of time in theatre. We are prepared for a long road to recovery afterwards. That is very interesting about the different output and frequency of changes. It must be such a lot to adapt to, but of course we would all rather they are here with us with a bag than without . I will get on to that website - trying to learn as much as possible!

Thank you all so much for your help and support.

Popski - your Dad's colostomy will be more like Pud's MIL's, not her father's, unless the surgeons find they need to remove radically large amounts of large bowel that they hadn't considered before (unlikely). Sounds like Pud's MIL was like my mum!

The stoma does take a while to heal as well - it can be quite raw for a long time.

it may be different for your dad but as my dads was planned surgery he was asked were he wanted the stoma to be placed. if your dad is asked this he needs to consider how his trousers sit. the place that my dad chose was not great as it was just where you belly fat rolls as you bend.

I think that, if Popsie's dad is only having his rectum removed, then he won't have as much choice in placement as your Dad, Pud - the ileum goes all around the central abdomen, so could come out almost anywhere; but the colon is more defined in its placement, and less flexible in terms of where the stoma can be placed as a result. Mum's was about halfway between her hipbone and her waist, and about a handwidth away from the bellybutton to the left.

Sorry, Popski's

you are probably right ThumbWitchesAbroad.

what i forgot to tell you is that both my dad and MIL have lead a full and active life with a stoma. there are a few firsts that are daunting. i remember the first time dad went swimming and the first flight they went on. mil was sure hers was going to blow up like the little packets of nuts but it was fine. the stoma nurses have both been brilliant. the only real problems i have encountered was when dad was admitted to hospital for something else. he was not in a position to deal with his bag himself and the nurses he had were pretty rubbish. int he end i told them that i would do all his chages. dad used a spray that removed the glue so it could be removed with out damaging his skin and a barrier that was used before sticking the bag back on to protect his skin. i witnessed a nurse trying to just peel it off with out the spray and they sticking it back on with out cleaning it well enough and with out using the barrier. it was probably just a bad experience but i was not impressed

Thanks Pud1 & ThumbWitchesAbroad! We will wait to see what the surgeon and nurses say. I've heard many people say that where he is being treated is a recognised centre for bowel cancer excellence so I hope my dad will be well supported re stoma care etc. He's having a long course of chemo/rt, then they wait for 12 weeks to let it all settle, so the op isn't until much later this year. I really appreciate all the practical advice.

I'll be having a look at the Bowel Cancer page too, just in case there's anything helpful - I have an irreversible stoma.

Agree that stoma nurses are very knowledgeable, and the Colostomy Association has a magazine and access to helpline which is also useful.

Not everyone can manage to cope with the full chemo programme -we're all different-and I found aqueous Soap was useful for "burned" skin and plain old ginger biscuits worked for me when nauseous.

I'm sure your DF will manage well, and send him best wishes.

Following on from ThumbWitches post, yes the NHS still provides stoma nurses and the various supplies. It's not relevant now, but you can also order samples directly from the various suppliers. There are many types of bag and also various products to make life easier.

Do you know what type of chemo he is having?

I have bowel cancer. I was initially diagnosed in 2012 and had surgery (I had all of my colon and rectum removed, and I had a temporary ileostomy) and chemotherapy. Unfortunately my cancer was caught very late and has now returned.

The chemo can be quite gruelling. Everyone reacts differently though. I had quite extreme side effects, but that was partly because I'd had the surgery first and so was also adapting to life without my large bowel.

If you know the name of the chemotherapy regime, you can look it up on the Macmillan website to get an idea of likely side effects. Remember not everyone will get every side effect, but it's useful to know roughly what to expect. Oncologist are usually very good at keeping on top of side effects so he will be prescribed medications to combat the most common ones. If he's one to suffer in silence, you might need to encourage him to report side effects. I'd recommend he keep a symptom diary as it's useful to help work out when your good days are so you can make plans, and also means you won't forget things between appointments.

He will need to be on a low fibre diet after the surgery, to begin with, and to introduce foods gradually. Different foods cause problems for different people. Pulses are not always a problem. Actually I found that it was much easier to eat while I had my ileostomy. If he has problems with wind, there are little charcoal things you can put in the bag to absorb it. There's no point worrying about all of the details yet, but there are all sorts of things that can help so it doesn't need to be desperately restrictive.

Sorry, this was meant to be a short post and I've rambled on! I'm sorry to hear about your dad's diagnosis and I wish him all the best with his treatment

Leslie and EmNetta thank you for your best wishes and information. The link to the side effects is particularly useful - he's having pills and we do know which ones, Capecitabine, though I'm not sure whether to share all those side effects with DF! The oncologist has taken him through the main ones, I think he's anxious about the sore hands and feet in particular? he wasn't expecting that. But so helpful for me and DM to know what might happen. DF had his tattoo markings for RT yesterday, he starts the chemo next week and then RT week after that so it's all taking off. He's been speaking to a nutritionist and feels much more prepared.
Leslie I'm so sorry to hear your cancer has returned. Sending you the very very best wishes to get through this next stage.

Some people like to know as much as possible, but others worry or start to imagine symptoms. You know your dad best :)

I had oxaliplatin and capecitabine. I didn't have too many hand and feet problems. My skin was very dry though. I used an intense moisturiser as often as possible. I'd recommend starting using one straightaway rather than waiting to see if the skin gets dry as it is easier to prevent it than try and fix it afterwards :) moisturiser can help with the hand and foot soreness too. Sorry I've forgotten the proper name for it!

Regarding whether to have the stoma reversed or not:
There are two types of stomas after colon surgery. Firstly, the tumour is removed, the bottom end sewn closed and left inside, and the top end brought out as a stoma - that is an end colostomy.
Second is where the tumour is removed, the ends are joined back together inside, and a bit of small bowel is brought out much higher up to allow the join to heal before using it again. This is a loop ileostomy.
It sounds like the operation OP is discussing is an end colostomy, but make sure to clarify this.
Reversal of an end colostomy is a major procedure, and can be as big an operation or bigger than the original operation to remove the tumour in the first place, especially if there has been radiotherapy, whereas a loop ileostomy reversal is a much much smaller operation. Therefore it needs to be very carefully considered whether to have the end colostomy reversal or not. I would suggest to him not to make decisions before the op - keep an open mind. See how the surgery goes, see how he gets on with the bag and worry about the reversal later. A lot of people assume a reversal is easy so are disappointed if it doesnt happen. Be aware of the possibilities beforehand and hopefully avoid that disappointment.

Also a colostomy and ileostomy can behave quite differently, so if looking things up or getting advice, remember they are not the same.

To clarify further (sorry): if your df is having an elective operation, then the two options are really - 1) rejoin the bowel at the time and give a covering ileostomy, which is reversible at a later date, or 2) dont rejoin the bowel and give an end colostomy, because it is not possible to rejoin it at all - this is not reversible at a later date. The option of doung an end colostomy and reversing it at a later date would be very unusual in elective surgery, but is commonly used in emergency operations, like the poster who's mum had a ruptured diverticulum. The point I'm trying to make (not very clearly) is just that there is a wide range of operations and stoma types, so be careful not to generalise from someone else's experience, and see what your surgeon says. (Although of course it is helpful to hear from other people).

I have no experience of bowel cancer but I have had an illestomy.

Just thought I would post the following things that I found helped, I had my illestomy after emergency surgery for blockage/ perforation.

I had runny output and I found that marshmallows, jelly babies and apple sauce helped to thicken my output.

My bowel nurse at the hospital was pretty dire but I used the pelican suppliers for my bags, etc. The nurse was amazing, I had a lot of problems at first with allergies to the adhesive, fitting, etc. The nurse came out to my house and we tried various options until I found one which suited. There are sachets which you can get which go into the bag to thicken the output and elimate odours.

There are sprays which helped remove the adhesive when changing the bag. NEVER EVER apply cream based product to the seal area. A district nurse did this when my skin had become sore and I had weeks of leakage afterwards.

I found it helped prevent leakages to sleep against several pillows sitting up.

You may not need any of the above advice but I just know when I had my illeostomy I found out most of the above after a length of time and it would have been easier to know beforehand.

Hope all goes ok for your Dad x