Dad bowel cancer age 66

Hi Clarey03 and welcome to the board. The bowel going to sleep is very common but not overly serious - it’s called ileus. It’s not pleasant as everything seems to come back up - I’ve had it twice and each time was put on nil by mouth, then water was introduced, then soup and jelly etc. and it seemed to resolve itself gradually. If he doesn’t seem to improve then they can insert an ng tube down into the stomache but that is apparently not very nice. 
I wouldn’t have thought there would be a problem with you ringing the ward just to see how he is? Alternatively just drop him a quick text saying ‘hi dad, how are you doing?’He’ll probably lose quite a bit of weight while this is going on but should be able to build back up once he’s home. 
The tumour and surrounding tissue will be sent off for testing and this will decide whether your dad needs chemo or not - the surgeon usually has a good idea from the scans but the pathology report will have the final say. Perhaps you could hang off giving the children any more detail until you have the full picture?

Hope your dads home soon - they sound a bit like my parents - only tell you stuff at the last minute so you don’t worry and then play it down even though I’m 58 now!

Take care and feel free to post any time

Karen x

Hi Karen , Thank you so much for replying to me I can not tell you how grateful I am. My mum said he ate a really big lunch when she was with him , and that night was the night he started vomiting . I think he has been drinking well he was yesterday, I know he’s back on drips and everything .

I will try and ring the ward , I briefly spoke to my Mum earlier , but she never wants to talk . I just hope he’s getting the right care , I’ve had terrible experiences in that particular hospital when my child was seriously ill . I just need to know there’s nothing I should be checking or ensuring is being done so I can switch my brain off a little . 
Thanks again so much 

Clare xxx

You’re very welcome Clarey03. I did exactly the same after my stoma reversal - the surgeon said I could eat normally so I had a Cornish pasty with gravy - big mistake!. They’ll keep him on a drip to make sure he’s hydrated and his electrolyte levels are ok - the daily blood tests will flag up if anything’s low.

Good to hear that he’s managing his stoma so once the ileus is sorted then he should hopefully be discharged again. 
Ive attached a link to the Macmillan page about talking to children just in case you need any help

www.macmillan.org.uk/.../talking-to-children-and-teenagers

Take care

Karen x

Hi Clare,  so sorry to hear about your dad. I just wanted to say that I had a bowel op with stoma 2 years ago (aged 73) and also had ileus. I was only on liquids but one night I threw up an incredible amount because of ileus. I immediately had the gastro nasal tube inserted so they can pump out surplus liquid that might build up. It wasn't that bad an experience. My five day planned stay went to eleven days and, yes, I lost a lot of weight. But the team got it working in the end with some aniseed tasting medicine and once working I could gradually increase what I ate. A hospital baked potato with cheese has never tasted so good!

Good to hear that dad is coping with stoma, if he has any problems there is a lot of help and advice to be had. I hope he has a good a stoma nurse as I had.

All the best to him and yourself. I hope he is back home soon and meeting up with his grandchildren

John

Hi John 

Thank you from the bottom of my heart for replying , it’s a set back as all was going so well and was due home yesterday, he’s now on sips of water only ( and a drip for 3 days ) as he was on oramorph and hungry and not allowed my mum with him other then an hour , and he’s not on a stoma post op ward it’s mixed ailments from what I can gather , apparently the hospital can’t regulate or provide a diet specifically for what he’s allowed , so he was given a beef roast dinner , he said to my mum he didn’t eat the peas or stuffing as he knew he wasn’t allowed, but following that everything went wrong .

I was wondering if there’s a way of transferring his care and paying privately to somewhere who can oversee correct diet etc  but I don’t know if you can do this . Or if there’s a way of ordering or making and providing and sending in what he can solely have post op while body adjusts once bowel wakes up ?

sorry for the questions. 
sincerely grateful for your message , gives me hope . 
clare 

Thank you Karen once again from  the bottom of my heart for replying to me

 , it’s a set back as all was going so well and was due home yesterday, he’s now on sips of water only ( and a drip for 3 days ) as he was on oramorph and hungry and not allowed my mum with him other then an hour , and he’s not on a stoma post op ward it’s mixed ailments from what I can gather , apparently the hospital can’t regulate or provide a diet specifically for what he’s allowed , so he was given a beef roast dinner , he said to my mum he didn’t eat the peas or stuffing as he knew he wasn’t allowed, but following that everything went wrong .

I was wondering if there’s a way of transferring his care and paying privately to somewhere who can oversee correct diet etc  but I don’t know if you can do this . Or if there’s a way of ordering or making and providing and sending in what he can solely have post op while body adjusts once bowel wakes up ?

As I can’t go in and my mum gets overwhelmed, I was just wondering if we can pay for a dietitian/ nutritionist , or someone to ensure his diet is now going go controlled more, the stoma nurse said that the ward he’s on can’t over see that has educated them , but I suppose when he’s on meds etc and hungry he may have not have been as careful as it all seemed to be going unbelievably well.

sorry for the questions Karen 
sincerely grateful for your message , gives me hope . 

Hi Clare,

It is my understanding that if he has ileus, as I did, when the small bowel is not working then he shouldn't be eating at all, I wasn't and just had liquids. It sounds as if your Dad's op was planned so from my own experience I would have thought he would have been assigned a dedicated Colorectal Nurse Specialist and also to have met and have contact details for a Stoma Nurse Specialist. I was given by them booklets on diet etc.

Before you start taking food in you need to talk to the specialists or at least the ward. If he can have liquids they may be able to offer him Fortisip which is a high build up milks shake type of drink. (He may have had these pre op.) If he can have solid food then, again you need the hospital's advice.

The bowel just takes time to start working again, in my case about ten days. I went in at 12stone 3lbs and came out at 10 stone 10 lbs.  Once it is working then you can start looking at what diet will be best to beef him up.

I mention the specialist nurses but have you tried to talk to the surgeon about the concerns you have, they may be busy but if you havent get hold of his/her secretary and chase her if you don't get an answer.

I wouldn't try to transfer him (even if it is possible) at the moment you just have to press someone to find out if the right diet is at the moment no diet!

I am so sorry that this is causing you and your mother such anxiety, if it is just ileus that is causing the problem he will get better in time.

All the best

John

Hi Clarey03and an excellent reply from crankshaft. The menu is the same throughout the hospital I’m afraid so it’s up to your dad to make informed choices which he sounds to have done by avoiding the peas and stuffing. As John says he will be on water only until the ileus resolves then I’d suggest he has something like soup followed by jelly or ice cream. I lived off tuna sandwiches as they were the only ones on white bread although they went through my stoma like a dose of salts and jacket potato’s with cheese or cottage cheese but no skin. He must also remember to chew, chew, chew. Hopefully the stoma nurses will have given him lots of information about the dos and don’t of having a stoma but I’ve attached a link to a page that one of the bag suppliers has which has lots of information.

https://www.coloplast.co.uk/stoma/people-with-a-stoma/living-with-a-stoma/food-and-beverage/

Hopefully he is starting to get on top of the ileus now and will be home in the next few days

Take care

Karen x

Thank you once again , it is the ileus , they think combination of morphine and wrong food , his mind was impaired by all the drugs and he was shovelling it down from what mum said .

We didn’t realise he would be given foods he can’t eat , and thought he would be on a ward with other patients who were the same post op .

Had my Mum realised she would rather have supplied all his meals as he was out of his face , and usually has a big appetite and was europhoric it all went so well and thought he was going home . So combination of things . 

Just made harder to help , due to all the covid restrictions etc . 
I’m sure he will get there and improve over the next few days . 

Thank you really appreciated x

Thanks Karen , I think he thought he had cracked it was going home , was mentally impaired / euphoric and didn’t chew properly as my mum said stop shovelling it down .

I am sure he will be a lot more aware / conscious and cautious once he’s allowed to eat again so hopefully things will improve and he can home and adjust and heal there .