New to the group

Hi process,

Welcome to the group. What a time you and your husband have had, but I'm glad to hear that he is on the mend. His recovery could be bumpy - I'm sure we all have our ups and downs when dealing with a stoma, but you do get used to it and learn to adapt to a new way of doing things. I don't have an ileostomy, but a colostomy, so I can't give you any real help on that. 

Some of the others will be along soon and they can offer you great tips on how to deal with this. I hope you get your husband home soon - completely understand you don't want him being in hospital any longer than necessary, and not to go to a care home. 

Take care,

Linda :-)

Hi Process 

I am new to this group too but am in the bladder cancer group and i am so glad this forum exists 

I do hope that you get your husband home soon and i hope that he makes a speedy recovery

Inanna xx 

process

Hi and welcome to stoma support we have already met over in the bowel group where we became friends.

Firstly can I say you are correct stoma care nurses don't work evenings, weekends or bank holidays BUT I do and I'm always just a click away if you need help in any way with hubby's stoma management so you can relax on that side of the business. I'll come back to stoma management nearer the end.

I'm so sorry you've had to go through these complications but hopefully everything has settled down now and he is out of ICU and back in a normal ward. Being in hospital at this time is not the best place to be for both patients and relatives. I can understand completely how you must be feeling in not being able to see him for 5 weeks, you can talk to him on the telephone but it's only when you are with him can you decide how he is feeling and this lockdown is not helping, seeing a loved one walk into the ward is the tonic the patient needs to help his recovery.

Why do the physios/occupational therapists want hubby to go in a care home, if it's because he needs to build up his strength and help him to walk then to be honest homes the best place and I can help him with the exercises he would get in the home but if it's something medically that's needed he is only swapping one place of isolation for another and the district nurses should be able to attend to his needs. Try and pin down the physios/occupational therapists and have a meaningful discussion with them why they want him in a care home, asking if the district nurses could take on his home care and really press for answers, unfortunately doing it on the telephone won't be easy, but go for it.

If he goes into a care home he will probably be expected to attend to his stoma management himself although he might be fortunate that one of the assistants might be able to help him.

Back to stoma management we can start now by looking at the short videos I've put together for you (they come from the American Cancer Society but the practice and theory is the same the world over)

(2) Your Colostomy or ILEOSTOMY

(3) Colostomy - Ileostomy  Your operation 

(4) Pouching systems

5) Emptying the pouch

Note as hubby has an ILEOSTOMY he will need to empty pouch various times during the day (night). The video shows various ways of emptying the pouch, my preference is sitting on a seat facing the toilet bowl and dangling the pouch into the bowl stops a lot of the splashing which he will get as his output will be watery.

(6) Changing a pouch

Note it is essential to get organised before you start and have everything laid out in order of use. The video shows the basics of what he will need.

With each pouch order received he will get dry wipes don't be shy in asking your supply company for as many packs as you think you'll need.

(7) Problem solving

Note this is where I come in to help at any time although I do prefer to call it solution finding 

(8) Life with an Ostomy

Note this shows hubby that he can live a Life with a stoma.

process once you've had a look at them if there is anything you want clarification on, please don't hesitate to give me a shout out on here or by private message and I'll get back to you.

If you remember this, There is no right or wrong way to look after a stoma only the way that works for hubby and together we'll get there using the age long method of trial and error.

Please, you are not alone in this. I'm with you both in this, I'm here, in stoma support to make sure that your hubby has a Life with a Stoma.

Anytime you need me I'll be here remember the name its .

Ian

CC

By clicking on any of the green text will take you away from this thread and Macmillans and open new pages for you

Thank you so much Ian for such a lovely warm and detailed reply will give me a lot y to o look at

physio wanted him in care home because he isn’t mobile much and with confusion too made it difficult however a lovely Macmillan support worker been involved last few days and very supportive in my choice of him coming home.  I have not even been able to speak to him on phone due to lots if thing’s both confusion and too ill land he has been moved 15 times day dodging covid or bring covid suspect so nurses didn’t get to know him.

hiwever Macmillan have been great she did FaceTime link and allowed us to see each other and in two days he has improved cognitive etc

i don’t think he can stand to do bag change at min or empty it I know she said he is laying down but last couple of days he has managed to be sitting more, I know it’s me that will have to do it.

he has drains in too and needs wound dressings and yes district nurse is plan for those things

he also has stage 3 kidney disease that’s been stable for 13 years I’m anxious about that impact with watery output

anyway thanks for now o will read and come back

rhank you so much 

process 

xxx

Please excuse typos I have to reply on my phone and can’t see perfect and hit wrong keys!x

We don't have to worry about the typing process, as long as we manage hubby okay.

Thank you for filling me in with the background information, very helpful.

I am concerned that you are maybe taking on too much, has anyone mentioned carers to you. 

If you have already done so can you please ask your GP for a referral to your county council Adult Social Care Team or you can do it yourself by looking here.

Needs assessment 

Preparing for a needs assessment and checklist

Carers assessment 

checklist preparing for your assessment 

How to find your local county council

Both assessments are free and you are entitled to them by law and gets you on "the radar"

Looking after someone at home is not easy it can be a 24 hours a day and it is essential that you look after yourself and have breaks for what I call "Me Time" this is set times of the day that you 

Go for a walk

Meet a friend for coffee

Get into a room on your own to chill out.

Don't think by involving your council you are asking for charity it's one thing that you both are entitled to and opens up many doors that can provide you with much needed help and assistance.

process I cannot express strongly enough that you should look after yourself, it's a  big undertaking and can and will be very tiring and time consuming.

I am always available to talk to you in any of the groups and private messages at anytime.

Later on I will be sending you another message about obtaining supplies and what you might need.

You might want to think about joining our Carers only forum group.

Please do let me know if you need any help sourcing information I have most of the things you need to know at my fingertips and will save you researching on your own.

You are not alone in this. You have walking beside you from now on.

Will speak later, I hope that I've not given you information meltdown.

Please take care, keep safe and let me help you.

Ian

CC 

Thanks they did mention carers but with virus I would rather have less people involved, I’m lucky in that I have two daughters one of whom lives next door and both been isolating, both have said they will help and both have said they will sleep over alternative, so hope this will be enough, they also said if I change my mind I can have carers later.

its good to know your availabile with all your knowledge to hand 

process x

Hi @process it's good to hear from you again so sorry you've both had such a hard time I have been so worried for you. I have an illostomy as well so can give you tips  as you need them.  I think you will need someone to physically show you how to change the bag , also just a suggestion but looking on you tube may also help to get you prepared . Everybody is different but in the first few weeks output is quite loose , I was advised to eat marshmallows and jelly babies to thicken it up , jelly is also good. The nurses should give you a diet sheet but I stick to a low residue diet , I avoid nuts, fruit and veg skins and seeds dried fruit , any kind of beans and pulses and especially in the early days quite soft food anything too crispy doesn't go down well for me , I think a lot of people relax their diet after about six weeks or so but I still stick to it (I do have a bit of a problem with food) My doctor also prescribes me ensure drinks as they give me all the nutrients but I had to really fight to get these. But keep on and they will supply them . I had to speak to a dietician last week otherwise they would stop them. She was from a different hospital trust a didn't know my history but when I explained about the illostomy she has let me still have them. 

Please use the stoma nurses knowledge they know a lot more about managing a stima than the GP , 

Also it will be important to keep hubby well hydrated , he will need to sip drinks throughout the day you may have to keep reminding him , and to drink separately from eating as the liquid can go straight through to the bag instead of in the body. I was also told to have extra salts which took some getting used to.

There is a drink you can make to hydrate called st marks solution to hydrate but check with the stoma nurse first.

Well I hope some of these tips helps it really is a learn as you go along journey you will get to know eventually the best time to change the bag , can be a bit erratic for the first few weeks but will settle down .

I sent you a PM a few days ago hope you received it.

Lots of love

Peacock62 xxx 

process

I hope everything is okay, did hubby come home to you?

I promised you information on obtaining stoma supplies.

These are obtained on GP  prescription which you can request direct from your surgery and send them to your supplier or you can tell your supplier what you need and they will request the prescription from your GP.

You will get with each order dry wipes and little disposable bags for putting old pouch etc in, you put the bag in your household waste bin.

Dry wipes -- order at least 6 packets of these every month and 1 or 2 packets of disposable bags, as time goes on you can adjust what you need but dry wipes are essential as you will go through quite a lot so you should order as many as you think you'll need plus extra.

You should allow about 2 weeks for you to get your supplies.

On leaving hospital hubby should have been some supplies and the stoma nurses should have made an order to the supply company they picked out for you. The initial supplies should arrive within a day or two and you should also receive complimentary items such as a wash bag, scissors, mirror and a few more.

In two weeks you should think about reordering the items you need. It is important that you should never run out of anything you use.

I would suggest that, as soon as possible, you ask your supplier if they supply disposable bed pads as a complimentary item and if do order a pack every month, they are very useful when doing a change if hubby is doing it in bed or a chair.

When ordering stick initially to the items you first received we can talk about other items he might need later on.

Any time you need help just call out, I'm here to help and take away any worries and concerns you may have.

Please do let me know if hubby got home or was he sent to a care home.

Please also remember that to look after hubby you must take care of yourself first.

Take care and I'll hope to hear from you soon.

Ian 

CC

Hi and @peacock62

thank you for replying and asking about us and for the tips 

he did come home on Sat and it’s a steep learning curve.

been managing to empty stoma first night was hard as bag been out on wrong in hospital so it leaked but the nurse who came to to IV change it for me

the trouble I’m having is getting all the meds down him he is really against taking them

we were just given a big bag of all sorts and had to read through and do sheet of when erc

can I ask about buscopan it says 2 four times a day and same with loperamide but GP yesterday said it’s too many

also he is struggling to eat and won’t take ensure or the protein jelly he is just having small amounts of food

we have to go back to hospital this afternoon to get pathology results too. 

he is very thin very weak and frail but he is happy to be home

i will be back just so little time to spare xx