Ileostomy, colostomy and stoma support

For people having an ileostomy or colostomy or living with a stoma. Support each other and discuss things like upper and lower bowel contents, bag recommendations, managing a stoma and foods to avoid.

Ileostomy this week - any tips for hospital?

Camelializ
Posted by

Hi

I’m having an Ultra Low Anterior Resection with ileostomy on Tuesday. I’ve previously had a low anterior resection but last time without a stoma. The cancer returned within a year and this time I’m having my entire rectum removed  

I had a practice with a dummy stoma and bag yesterday  Got a bit hot and sweaty under the bag whilst gardening but I guess I’ll not be doing any of that for a while!

ive been told I’ll be in hospital for 2-5 days. Any tips please as to what to take in and how to manage some and bag on the first few days? 

Thankfully there is a wealth of information on here - it’s just that it’s not always easy to find everything in the myriad of posts. 

Thanks a lot. 

Camelializ

Camelializ
Posted by

Should read “manage stoma and bag”

Bodach
Posted by

Hi  

I wouldn't worry too much about managing your stoma too much whilst in hospital as the stoma nurses and the ward nurses will be on hand to assist you and give you practice time with a real pouch.

Just take what you would normally take for a hospital stay. Anticipate being in for the maximum time re member this is a big operation.

When you are discharged you will be given a supply of pouches etc to take home and the stoma nurses will arrange for a further supply to be delivered direct to your home. You may Probably have met with a  community stoma nurse depending on where you live in the U.K. and she will come to you at home. Note not all areas support this facility you may be unlucky and have to go to a clinic for check ups but hopefully you will have a community stoma care nurse. 

The nurses will go over the ordering procedures every item needs a prescription and your supplies will be dispensed by a specialist company. NOT all high street pharmacies will be able to supply every item. It is better to use the company in the first instance who delivers you first supply as they will supply disposal bags, wet and dry WIPES plus a multitude of free items.

If after the operation you feel the need to sneeze ensure that you hold in your stomach area where your stoma is situated otherwise you could end up with a hernia.

Please do keep coming back with any questions that you may have even if it sounds daft we will always give you an answer to put your mind at rest.

Ian

Panda21
Posted by

Morning 

I had the same operation that you're going to have last May. In addition to what had been posted my advice is to introduce food slowly and in small portions. Start with light food and look into what you are allowed to eat in the early days....little and often is the key.

Sometimes General surgery wards are not brilliant at knowing what you can and can't eat so it is useful to look into this yourself.

Good luck and we're all here to support you x

Camelializ
Posted by

Hi Ian

Thanks very much for your comments which are reassuring. I don’t think I have a community stoma service here in North Bristol but I will ask. 

Cheers

Camelializ

Camelializ
Posted by

Hi Panda21

Thanks for the tips on food. The stoma nurse told me I’d have to follow a low fibre diet for about 6 weeks and I have experience of this following my last surgery but of course the output will be a lot more immediate with a stoma I imagine! I’ll make sure to ask and brief my hubby to bring in some suitable food if necessary. 


Over the weekend I had a bit of a mad cooking session where i pureed stewed apple and made carrot soup which I sieved and froze. Hope I’ll be able to eat some of those as I don’t fancy six weeks with no fruit or veg. I guess needs must. 


Thanks. 

Camelializ

Camelializ
Posted by

Hi again Panda21

I wondered how you are getting on following your reversal?  


Camelializ

Ukulou
Posted by

Hi Camelializ

I also had this op last August and am coming up for my yearly check up.

An important thing to remember is to be kind to yourself. It is a big operation and if you are generally fit and healthy you will recover well but having a stoma is an adjustment and getting to know it can take time. Like Panda21 says, food should be introduced slowly and you will get to know how you react. The stoma nurses will your best friend as they have seen every which way and types of stoma so can really give you good advice. You will have a phone contact too for supplies and they are very knowledgeable and kind.

I hope everything goes well for you and that you can be back in your garden before long enjoying it.

Lou

Camelializ
Posted by

Thanks for your words of encouragement Lou. 

Camelializ

Annamouse
Posted by

Hi Camelializ, I have had an ileostomy since Boxing Day (see my profile). It has been amazingly well behaved, and I’ve eaten pretty much everything I fancied since almost the beginning. I know that isn’t everyone’s experience, but fingers crossed it will be yours too.

Hospital food was horrible and remarkably ill suited for someone on a low fibre diet. It was a huge relief to get home to my lovely husband’s cooking - it was really only then that I fancied eating much at all, although I drank loads of water.


At first the output from my stoma was dark green and watery - quite odd. It gradually became more poo-like over the first two weeks. It is now porridge type consistency and really not that unpleasant. If you’ve had children or a dog, emptying and changing the bag won’t be horrible once you’ve got used to the routine. The nurses emptied it for me initially and kept a record of quantity. Try to take over as soon as you can and get up and moving as well. They won’t let you home until you can change the bag yourself. 


The stoma nurses at Swindon's Great Western were amazing - they saw me every week at first, to make sure I was coping and had the right bag etc. I’d advise you to take up any appointment  offered, even if you’re coping, and ring them if you have concerns.


If you don’t get on with the bag, try others. I tried 5 before settling on the Hollister 542 range which suits me. I had sore allergic reactions to a couple and two others leaked. I’ve never had a leak with this one in 4+ months and I’m walking, cycling, gardening etc. 


Initially I wore loose dresses but now I’m wearing all my ordinary clothes. I’d rather not have it, but it saved my life.


I hope all goes well for you. Anna x

Panda21
Posted by

Hi Camelializ

I'm doing fine thanks...I have an unrestricted diet and I am back to work albeit on a phased return. I am not a 100% fit... not back to exercising etc but that is due to radiotherapy side effects I'm told with my heavy limbs.

On the whole nothing to complain about I'm alive and seizing the day.

When I had my bag I would eat a ripe banana every day to try to thicken the output...along with marshmallows and jelly babies of course!


Good luck and hope everything goes well for you.


Amanda x

Templetonburn
Posted by

Take your usual bathroom products and maybe a book though in some hospitals they have TV that you can buy a card for.  I wouldn’t waste your money though as you really don’t feel like doing much at all for a few days. Maybe take a toothbrush that contains AA batteries though that certainly isn’t an essential.

I found ear plugs, wet wipes and dry shampoo (as it’s not easy to shower in hospital) very handy. Silicone Ear plugs were worth every penny as there was always someone in the ward yelling out in the middle of the night. The hospital gave me the wet wipes which I think were called “Pia”.  They also provided a box of tissues. 


My consultant recommended Lucozade Sport with a flip up lid to replace salts etc, that we need. The Raspberry one is great.  I found a complete list of suggestions of stuff to take in a booklet given to me by the hospital. (Maybe the Macmillan one) but not sure where to find it at the moment.  I was in hospital for 2 weeks as I got Ileus (bowel and bladder stopped working for a little while) so a long charging cable for your mobile phone might be handy in case you are there for longer than expected. The normal Apple cable is too short to reach the electric sockets behind the bed. The book suggested taking an adapter if I remember correctly - I guess in case your neighbour has pinched the only plug socket.


Depending how long you are in there I found that a cushion insert from home was handy for the chairs next to the bed as they are quite hard and they might have you sitting there longer than you want! 


Hope these few suggestions help. 

Camelializ
Posted by

Hi Templetonburn

Thanks for all those tips. 


I will get my hubby on the case to get those things. Last time I was lucky to have my own room with ensuite bathroom as we have a brand new (PFi-financed - enjoy now, pay later) hospital. 


I’ve got earplugs and a sleep eye mask and some audio books downloaded on my phone if I have the energy to listen. 


Sorry you had ileus (new word for me but useful to know about) and hope you’re doing ok now. 


Camelializ

Undine
Posted by

Hi anna

I have ready your advice to Camelazia and wondered if I could ask your advice about diet, you mentioned you can eat most

almost anything..  I had an ileostomy a couple of months ago, and was instructed not to eat seeds, lentils, beans peas etc, no tomatoes etc.

 So could you advise me what you manage to eat? I am fed up of eating carrots and swede.

I agree about hospital food, they don't do low fibre diets, you have to ask for special food, which is microwaved and mashed.

I am also having stoma bag issues, my stoma nurse has tried various but with no luck as it has shrunk, I have read advice

of other people. I have asked for some samples. 

On Friday I am seeing my nurse, who is offered a heavy duty type, which she said will probably cause bruising. Quite

apprehensive.

Thanks

Pauline

Annamouse
Posted by

Hi Pauline

I have eaten all the things you list without any problems, but suggest you introduce things slowly to see if they cause problems for you because everyone is different and I would hate to encourage you down the wrong path!


Last night, my tea consisted of quiche with green bean salad, new potato salad (with skins on), lettuce leaves and rocket, coleslaw and tomatoes followed by fruit salad (pineapple, mango, melon, nectarine, grapes, plum). Followed by a chunk of chocolate - in case you were thinking I’m a complete salad nut. Tonight we had chicken curry, rice and broccoli (slightly strange but it was the only green thing in the fridge that remotely went with curry).  I mainly eat white bread, but today I had a brown crust because it was warm and smelled delicious. So you can see that I am eating a wide range of food. I try to chew everything lots and I have gone off red meat pretty much completely, although I eat chicken and fish (fish makes for smelly bag emptying!).


I would add in to your diet a small amount of something you fancy and see how it goes. If it causes problems, leave it for a while and try something else. If it is ok, keep slowly adding other things.


I tried 5 different bags, eventually settling for the Hollister 542 range, which has side flanges. In 4 and a half months, I have had no leaks with that bag - despite, today, walking, cycling and gardening. My stoma is small (2.5 cm) but sits quite high, so it sounds as though yours might be different. My only advice is to keep trying different bags until you find the right one. 


Hope you find a way to make it more bearable. Anna x