Colostomy Advice Please

I’ve just come across this thread ZACSGRANNY. I have an ileostomy so it’s a bit different but four years on I still remember the early days which were emotional and confusing at times.

The thing which I found most difficult to deal with was the unpredictably of the situation as my body healed and settled into its new normal.

Even now I still have some glitches where something I have eaten causes problems even although I’ve eaten the same thing many times without problems.

The thing is though that it’s very early days for you, it will get better. You will lead a full life again. Take things easy just now, talk to your stoma nurse whenever you need to, rest and recuperate.

I read everything I could find relating to my ileostomy, I hadn’t been ill before my surgery and had no idea, I’d never heard of this type of surgery. Now I’ll tell anyone who wants to hear about it but on the other hand most people don’t know that I wear a ‘bag for life’ as I can generally do anything I want to, including long haul travel.

I’m sending you my best wishes.

www.colostomyuk.org/

I do hope you had a good night and that day by day you start to feel more "you".

I hope it's helpful that others have come here to share their thoughts and experiences.

Thanks again everyone.
It's so good to read other people's experiences.
Someone said to contact my Stoma Nurse if I had no output for 6 hours? But they only work office hours? I really can't understand that. Stomas don't work office hours.

What do you do if you have a blockage?
My nurse said not to take anything until everything settles down. No idea how long that will take.

I suppose I hate having absolutely no control over any of this.

If you suspect a blockage, have no output, vomiting or pain call 111 for advice, don’t wait until your stoma nurse is available.

Blockages are one of the problems with a stoma. As time goes on, you may learn to recognise very early warning signs of these. My early sign is a feeling of discomfort in my stomach, more like feeling hungry. Then as the time passes I can start to feel a small 'lump' next to my stoma.

The first time I had these, I did not know what to do, had received no advice and after 24 hours took myself to A&E. All they did was to put me on a drip (Always a problem re. dehydration), but failed to call down anyone from stoma department.

When the next time came, I did not bother with all of this. did continue drinking, but have found that 'heat' is the thing to deal with it, and to start as soon as I get that 'early' warning stomach ache. So, - I sip on a cup of boiled water, as hot as I can take it, at the same time, put a hot water bottle onto to my stomach. And rest.......I do actually massage over that 'lump' area. Doing all of this, constantly re-filling water bottle, I can usually get things started again within a few hours.

Main thing then is to try to work out what caused that blockage. This is usually (not always), related to something that was eaten.

I went outside for the first time yesterday.
We drove to the Riverside Park and I managed a short walk , then we stopped in the cafe for a cuppa!
I actually felt normal.
Not bad for exactly two weeks from surgery.
There is light at the end of the tunnel.

My only real concern is my blood sugars as I'm T2 diabetic. Had to stop my meds before surgery and hospital didn't restart as they were happy with my levels. Since coming home and restarting meds the levels are higher than I would like, even though I'm eating much the same.
Does anyone know if a Colostomy affects Diabetes?

No, sorry, but how lovely to venture out and feel normal.
... a little bit of 🌞 sunshine in your day.

It's the one thing I've always dreaded. And it happened.
$am bag leaked really badly. All over me and the bed.
Husband brought towels and I managed to get to the shower and get cleaned up.
New bag on and back to the bedroom.
Just about to go back to bed when new bag leaks, so back to shower.
Then husband takes towels etc downstairs to Utility to washing machine and discovers water coming through kitchen ceiling.
My fault. Concentrating on getting cleaned up, I hadn't closed the shower screen, then hosed the trail of sh1t I had left on the bathroom floor.
By 6.30am I felt sick and too late to go back to bed. Frightened of another leak, so downstairs on the recliner.
Telling myself it wasn't as bad as last time I had a bag leak I was in hospital in pain. Staff left me for 20 minutes, then I had to lie there whilst they cleaned me up (badly as it turned out)
At least I was able to clean myself up this time!

Oh, dear - leaks are a problem and can be very taxing. For several years after my op. I always had draw sheets on my bed, but did finally give those up. Do have a good mattress cover though - a machine washable one.
One of the reasons why I would not consider going into a retirement flat is because most of these have communal washing machine rooms, and I know that on the occasions when things go wrong - I need to have easy and quick access to my own private washing machine.

When I moved to my current flat, seven years ago found it wonderful that kitchen (with washing machine) was directly opposite to my bedroom.

However, leaks do become an increasingly rare occurance as you and your stoma get an understanding.

You probably need to keep a careful food diary for several months, so you can track what sort of foods, eaten at what times cause problems like blockages/leaks, etc.

There are also stoma bag covers, quite pricey - but you might wish to invest in one to wear at night and on special occasions when you are going out. Gives that little extra protection on leaks.

I have been having injections - four weekly - for a rare condition and these have a bad reaction causing my output to become totally watery for a couple of days. Sadly, the last one I had (five weeks ago), stayed like that for 2-3 weeks causing me many problems.

Nobody can say that stomas are a perfect solution. BUT....the alternative is far worse. Anyone with a long -term stoma will have had their problems and difficult and embarrassing moments. I most definitely have - however without that operation I would have been dead many decades ago.

You are making normal progress. Glad hubbie is being more understanding. It is very, very early days. When I had my stoma back in 1990 I was still in hospital for several weeks after the op.

Thank you Franbern.
It does make you think about the practicalities.
I will make sure I have a washable cover on my bed from now on. I'm also going to be measured for a wide Stoma Belt to hold my bag in place which may help.
Will also make sure towels are within grabbing distance in future.
I was quite distraught when it happened but I've accepted it now.
Will speak to my Stoma Nurse on Monday or Tuesday as I need to order and she wants to decide which bags I need going forward.
Currently using drainable but may move to two piece as I don't fancy changing several times a day!

Most, probably ALL companies that produce stoma equipment are more than happy to send out samples. So, do get several different types of bags to try out.

For my part I have always used a two-piece drainable system. So, flange goes on and bag clips onto that.

Even after all these years have no absolutely regular day/time of changing this. It is when I need it - sometimes can go as long as four days between changes, occasionally may be two in one day. As soon as it starts to feel slightly uncomfortable/itchy - I change it. The itchiness is a good sign, where your output actually touches you skin it 'burns' it. Yes, there are several types of powders, creams, etc to treat this skin damage - BUT the best way is to afford it and to learn always to listen/feel your stoma. Never ignore that slight feeling of discomfort.

I never leave home without having - in my handbag - the equipment for a couple of complete changes (flanges, bags, clip, wipes, disposable bags.) Even a spare pants of pants. People often comment as to why I always have such a large handbag, but this is the main reason. For me to have to change the whole capoodle takes just two or three minutes, so a normal trip to a loo - need an accessible loo, so that there is a basin with a hot water tap next to loo.

You see to be slightly more relaxed now and learning how to live with your stoma. Such early days, you are doing so very well.

With that in mind, I hope you have been given a radar key?

shop.disabilityrightsuk.org/products/radar-key

Yes, I have a Radar Key. Is there a site to tell you where all the disabled loos are?

I am feeling a bit more relaxed about my situation, but can't imagine being back to normal life. Thinking of all the things I need to carry for bag changes.
The main thing for me at the moment is a lighted make-up mirror as I struggle to get my ring and bag in the right place because of the stomach swelling.
I suppose if I move to two piece bags, that bit will be done at home and just the bottom part changed if needed whilst out. That would mean carrying less.

Hoping my Stoma Nurse will make contact today as I've left her a message, so we can talk about different bags.

thanks for the chats ladies. It really does help

www.changing-places.org/find

This might be useful. It has photos too.
Not sure it really has all of them.

NotSpaghetti

www.changing-places.org/find

This might be useful. It has photos too.
Not sure it really has all of them.

Thank you - very useful x

Changing Places are very different to normal Accessible Toilets. Very specialist areas and not available with a radar key.

Most public places were there are toilets will have at least one accessible toilet. (There are NO Disabled Toilets - just Accessible ones). Main problem is usually do do with heavy door - but this is far more a difficulty for a wheelchair/scooter user than anyone ambulatory. They are a good size, and have a basin with hot /cold tap in them, so no problem with bag changing.

Restaurants etc also are required to ensure that a wheelchair user can access a toilet there.

Trains have them. If you are going to visit anywhere, a check beforehand on line will inform you as to where and how many of their toilets are shown as accessible.

AND, these really must be 'accessible'. still, some are used as store rooms, etc. If you ever come across make immediate complaint.

Many local areas have organisations (usually run voluntary) called something like Disability Action Group. Look up your local one.

Can I just say about two-piece ostomy equipment. Do not rely on just carrying with the actual bag. If there is any sort of leak, then it is the flange bit that goes directly onto the skin than will need changing.

As you get more used to your stoma, you will find you will need less and less of the paraphanalia for changes. All I ever use (and take with me everywhere), are flange(s), bag(s), dry wipe(s), bag(s) for disposing of taken off items. Just need some warm water for use with my wipe. No other powders or creams or sprays etc.

I recently had a problem at a very local railway station, where due to no staff they had locked their two toilets (both marked as accessible). Not with radar key. Only entry was for a member of staff to unlock - sadly, no staff were there mid-afternoon weekday.

My complaint was made to GWR, who acknowledged the problem, due (they say to vandalism). Have given me a fifty pound discount of my next GWR traintravel. Still not covered problem of no loos on that station though!

Interesting Franbern.
There really is a lot to think about isn't there?

My Stoma Nurse came and gave me a deeper bag to try for now. Don't fully understand the difference. She will be back on Friday, but no talk about changing the style of bag yet.
I think she wants the internal stitches to heal, external stitches around the stoma to dissolve, and the glued wounds to be fully healed first.

This really is a different way of life.

I know the "changing places" toilets nearest my disabled friend were opened with a radar and were available for others to use - not just those who need a hoist for example.
I think there must be a variety of "rules" around who can use them, depending on who owns/maintains them.

I'm sorry if I've got this wrong.
I thought it was a terrific resource.
Apologies if I've mislead you.

Most, if not all, Changing Place toilets can only be accessed when the user gets 'buzzed-in'. They need to be registered with the company and a camera checks them at entrance. This goes through to the nearest person who is probably no where near that specific facility. They can then buzz them in.

They are wonderful and serve very specific needs. Would have been great to have had them in the past when i went out with my hubbie when he was very disabled with MS. Also one of my g.children who had a highly difficult problem in that she had no nerves in her bowel, so actually needed washing and changing quite often. This went right through her childhood and upto her teenage years. I cannot say how often her poor Mum was on the receiving end of abuse when she came out of an accessible loo with, what looked like, a healthy youngster.

In most of these it is unlikely that a stoma would be counted as a necessary usage of a Changing Place loo.

None I have ever seen can be opened by the person or their carers with the radar key.

However, it is very useful to have one of these keys with you many accessible toilets are locked and can be opened with one of these. I have three or four of these keys, so keep one in my most used handbags, so never caught without one.

There are still some accessible loos that can only be opened by staff members, which is very difficult and annoying and - to me - demeaning. The one at Bristol Bus station took me nearly ten minutes to find the appropriate key holding member of staff, and the two on Yatton station could not be used as there were NO staff on site.

As well as my ostomy I use either a mobility scooter or an electric wheelchair. I have a great problem with the doors to many of these loos - they are big and heavy. The obvious answer is that sliding doors should be installed and at Glastonbury Museum I found a wonderfully easy to use one with a bi-fold door.

Sorry if people find this conversation rather boring. I must admit that accessibility and toilets are something I feel very deeply about.

NotSpaghetti, not at all.
All information is good.