Chronic illness · Health · lifestyle · ostomy · Urostomy

When your ostomy order arrives

When you first have your ostomy, the stoma nurses in the hospital will set you up with some products and if you’ve never had a supplier for your urinary products they’ll generally set you up with the one the hospital uses. Then once you get home you can decide what company you want to use.

  • Select
  • Charter
  • Bullen
  • Patient choice
  • Fittleworth
  • Amcare

These are to name a few companies that can supply different brands of bags etc. These are in the UK as that’s where I am from.

You need to get all your products out of the box when they come and the leaflet with what they sent. You want to make sure it all matches up and isn’t damaged in any way.

If you haven’t got one already then a storage space or box to put all your supplies in. I have a box and a set of drawers too. It makes it so much easier so you can keep an eye on how much you have left and when you need to order again.

My order usually is as follows

  • Dansac convex bags
  • Single use night drainage bags
  • Salt barrier wipes
  • Ostopeel blackberry adhesive remover spray
  • Dry wipes
  • Black bags

My order is usually once a month and depending on how often I’ve changed the day bag (my dansac) sometimes I have enough for the next month too. I generally change it twice week. I prefer to use single use night bags as it means less infection as its a fresh one every night. I have a box of salts and two sprays which will last longer than the month.

If you need to cut your bags then do this as soon after they arrive incase you need to use them when the others have ran out. I’m lucky my supplier cuts mine to template. This I’m eternally grateful as I would make a total hash of it otherwise.

Keep a note of when your supplies arrived so you know when to order again. Sometimes your supplier will have their own system and will phone you to see what you require. I have to phone my Dr’s to get them to send the prescription. All Dr’s surgeries are different.

Once you are settled with your stoma and have tried different products you will hopefully have the ones that that are perfect for you. Trust me I’ve been through some products that just haven’t suited me.

I hope you found this an interesting read

Chronic illness · lifestyle · ostomy · Urostomy

Bag changes

I hope those of you that are reading this are keeping safe and well.

I am writing from a urostomy bag user so if you have a colostomy or ileostomy this may differ so please forgive me.

You either choose a one piece or a two piece ostomy pouch/ bag/ appliance. Whichever one works for you. Personally I have only tried a one piece and I’m happy that way. We all are different.

Some like to change everyday this could be because they struggle to get it to last on their skin very long. Some do it as they may have OCD about being super clean. Nothing wrong with that. Then there are others that change 3 -4 days some can go longer. I am a 4 at a push girl.

Mornings are usually better for your bag change as you won’t have drunk or done much moving around throughout the night. Of course mishaps can’t be helped and need to be sorted and cleaned up ASAP.

Some other bits and pieces are needed to help your stoma and also to help the bag stay put…some of these include Elastic tape/ flange extenders, seals / mouldable ring and spray to remove old bag and get rid of excess stickiness.

At night you attach a night bag to your ordinary bag so you don’t need to worry about getting up to empty and can have a more peaceful nights sleep. Some rather get up and empty than have a night bag on. Whatever you feel better doing.

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Most of you will know this but those having problems or are going to be getting a urostomy will find this helpful.

Chronic illness · Health · lifestyle · ostomy · Urostomy

Worries about your Ostomy in a crisis

I have been thinking over the past week about how a crisis like we are going through can affect someone who has an ostomy.

Having enough supplies

I don’t know about you but sometimes you have a lot of supplies and then other times it’s a panic to make sure they arrive before you run out.

Well today I made sure that I ordered 3 boxes of  10 urostomy bags to last a few months at least. Those are the main things I worry about not having enough of. Hopefully by this time next week they will be In my hands and I will be able to breath a sigh of relief.

Not being able to go to appointments 

I have an appointment the middle of April with my stoma nurse, and I know that it will most likely be cancelled as it’s not vital I go but it’s to keep an eye on my newly refashioned stoma. My hospital transport is usually run by volunteers so I doubt that will be running either. So I’m hoping my stoma doesn’t change and i don’t need to worry about seeing them.

No space in A and E

I know it’s gone through my head that if all the people who are poorly with this virus are in the emergency departments and other life threatening illnesses or accidents and long waiting times with the 111 service then if your stoma/ kidneys / infection takes a turn then will you be able to be seen at A and E?

Treatments

If you are having chemotherapy, radiotherapy or any other treatments for cancer, do you fear that you won’t be able to go to have it? It’s such an uncertain time.  I wish you all the best in healing.

We must stay strong and hope that all will be in hand and if we are in need that there will be someone with advice on relevant action to take.

Stay safe my friends 

 

Chronic illness · Health · lifestyle · ostomy · Urostomy

How to dress well with an ostomy

OK, so not all people with a stoma will need to change the way they dress… Lucky for them. But here’s a few pointd that I’ve thought of.

Comfortable clothes

Having something tight around your tummy even without a stoma is uncomfortable so where possible wear something comfy.

Don’t be afraid to go up a size.

I mean who is going to know apart from you. Cut the labels out if you must but don’t be ashamed to go up a size for the comfort of your stoma and also your bag won’t be so noticeable.

High waisted

I guess depending on where your stoma is located on your tummy, high waisted bottoms will fit you better and your bag will be protected.

Protect your stoma with fitted underwear

Wear them Bridget Jones style knickers but make sure there’s a bit more support in it, as your bag will not pull when it’s filling because the fabric will be aiding it.

Never restrict your flow

please don’t be vain and restrict the flow of your bag. It will cause a lot of problems, including leaking. Your bag is the most important thing after your stoma.

Don’t change your style

The ostomy doesn’t define who you are. Just keep to your original style with a few adaptions mentioned above. If course I’d you want to look different after surgery nobody is stopping you.

Chronic illness · Health · lifestyle · Urostomy

What people don’t see when you have an ostomy

I thought I’d do this in a simple form at some point you’ll be able to relate to all of these and possibly add more on.

So here is what people don’t see when you have an ostomy

The bag or stoma itself

Most of the time your bag and Stoma is hidden away, unless you decide to flash it.

Your warrior scars

These tell a story of how you got to where you are, but most of the time unless you are sunbathing, or in any other situation where your scar on show.

The pain you experience

Most people don’t see the amount of tablets, liquid medicine or injections you have to go through just to try and function normally.

The struggle you’ve endured

This was after my bladder removal last march, behind closed doors nobody could see the sadness. The I have to adapt face.

The umpteen times you’ve needed hospital visit

Unless you publicly tell people on social media of every visit, every treatment and every hospital stay. They won’t know.

How you mentally need to hold it all together

This is me now. Holding it together. With a little bit of anticipation. You wouldn’t know behind my smile I was anxious.

Chronic illness · Health · lifestyle · Urostomy

The good and bad of having a urostomy

On the whole, having a Urostomy is the best choice to make.

But with anything, there are the good, the bad and the ugly so let’s not beat around the bush and tackle the list.

THE GOOD POINTS

  •  Being free of the symptoms and pain you were experiencing
  • No need to rush to the bathroom 20 times a day peeing
  • No catheters needed
  • Less medical equipment needed to carry in your handbag
  • Under your clothes nobody would know you had a urostomy bag
  • You can go back to normal activities once you are all healed from your operation
  • Sex doesn’t have to stop just because you have a bag. Still find time to enjoy sexy time.

THE BAD POINTS

  • If your bladder wasn’t taken away and it was just a diversion then some of your symptoms may be apparent still.
  • You may not have a great stoma, it may be an innie, or troublesome from the start. remember your surgeon tries to work their magic, but isn’t a magician.
  • The skin may become sore, have creases in which may cause leaks and the bags not to stick
  • Infections can still happen, when your body isn’t happy it will let itself known
  • Most of the time it’s non-reversable so it is for life and you just have to adapt to it the best way you can.

Please if you are reading this and haven’t had a urostomy yet, don’t be put off.

Nothing in life is ever plain sailing and you need to work at some things some of the time.

Not quite decided what next week will be about I’ll get my thinking cap on.

Hope your weeks a good one so far, even though its Monday

Chronic illness · Health · lifestyle · Urostomy

Me and my urostomy a month on

So my second time round of having a stoma… 10 months with the old one and now 4 weeks with my new one I can say I feel so much more confident.

I have to admit I’ve had a few tears but it’s a change and most changes come with a few struggles.

If you are squeamish look away at the next few pics.

so here’s a before pic of my stoma before surgery in January

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The one that caused leakage because he was an innie 

Then I bring you my new stoma that was refashioned and made to come out more

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One day after surgery January 2020

 Bear in mind this was still swollen and super new. I was so surprised that they used the same piece of bowel to make my new Urostomy.

So now this is what it looks like a few weeks after

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The new improved one

From the photo before it’s shrunk from 30mm to 25mm. I am hoping it stays with a spout as it’s so much easier to apply the bags and keep them on for about 3/4 days

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These are the only 2 products I need at the moment apart from my nightly night bag but it’s so much better than needing brava tape and seals but I have them in my change bag should I feel the need for them for extra security.

The bag is a Dansac Nova 1 convex urostomy bag and the adhesive remover spray is blackberry by Ostopeel just in case you were wondering.

I have been up to see the stoma nurse once a few weeks ago and then I have to go tomorrow afternoon and she was very happy with it, so fingers crossed she says the same when we see her tomorrow. I’ll keep you updated.

Next time I’ll talk about some things that come with having a urostomy some good, some not so good.

See you in my next post. Thanks for reading 😘

Chronic illness · Health · lifestyle · Urostomy

When it all went wrong

I went on my merry way to work one summers day in 2013 and grabbed my litre bottle of squash.

Little did I know, that day would change my life forever.

Throughout the day I drank my squash but until nearly it was time to go home that I thought oh ouchy that hurts. My bladder was so full I had tried to go for a wee a few times that day but to no avail.

I got home at 5ish and said to my Mum that I was in so much pain and couldn’t wee for the life of me. So we phoned the Dr’s who said go to the minor injuries unit and they’ll see to you there.

I stood the whole time I was waiting as sitting down was just too painful.

Eventually they got a catheter in and drained a litre and a half. The bladder is only supposed to hold 400/500 mls.

So for a few weeks they said to keep the catheter in with a leg bag on and they’d arrange a scan. My Drs said to come in and have it out after about a week to see if I could wee again. I did a bit so they said still go for your scan. So that’s what I did.

I had to drink on the day of my scan a considerable amount and they wanted to see a full bladder then scan again once on emptying. Trouble is, my bladder went into retention and again I couldn’t pee.

So life for about 5 months were wearing a urethral catheter with leg bags attached. At the age of 28 I felt old before my time.

I went to the clinic on a fortnightly basis to trial without catheter. There were old men there with prostate trouble and then little me drinking a jug of water. Hoping to wee looking out of place. It didn’t matter how much I drunk I still couldn’t wee a drop on my own without some catheter.

So the next step was a supra pubic catheter, a SPC for short. Which is a small procedure where they make an incision on your tummy and insert a tube into it and feed it to the bladder, then you will have a flip flo on there where you can open and shut it when you need a wee. This happened in December of 2013.

It was the bane of my life. I had so many infections with it, some that were that serious I was sent into hospital for very strong antibiotics, observation and a drip of fluids.

My lovely consultant said we can’t have you being like this at your age, it’s just not fair. So he sent me to see a specialist.

Next week I’ll be talking all things surgery.

Hope you’ll come back to read the next part my story.

Thanks for taking the time to read this one, wanted to get in as much as possible.

Chronic illness · Health · Urostomy

Welcome to Stoma Bag Life

One day you have your bladder and it’s working and then you blink and it’s gone and you are staring at this bag on the outside of your body thinking what the hell  do I do with it


I guess I best introduce myself

My name is Holly. I’m 34 and since the age of 28 I have had serious problems peeing.  I always thought it was just old people that got bladder trouble.
Nope it actually doesn’t target age you just are an unlucky sod.

So since March 2019 I have been living with a urostomy bag which is a pee bag…where your wee comes out of a stoma made from part of your bowel attached to your ureters. If your bladder is non functional, diseased or has cancer they will remove it. Some people have just had a diversion in case one day they wish to ditch the bag and try different interventions.

I had exhausted all avenues and felt this was the way I wanted to go.

That is a little bit about me and the start of my story. Next time I will delve into what went on after my bladder stopped working and how I got to where I am right now.

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Credit to @emjayuc on Instagram

As you can see I’m new to this blog, so any readers or followers would be gratefully received and of course I’d return the favour.