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

IMG_20190829_004514.jpg
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

IMG_20200224_140105.jpg
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

IMG_20200202_073530.jpg
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

dan_894_24_nova 1_urostomy_pouch_convex_front_0158.jpg
31290_230f6cfc-ddba-4948-b356-d7ee6b51db740_1024x1024.jpg

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

All my surgeries

Thank you to all of you that have read my other two posts. I don’t think anyone should be ashamed to talk about their bodies, no matter what is right or wrong with them.

So last time I told you where it all went wrong with my bladder and the struggles I endured. Today I want to touch on all the surgeries I have had to go through because of my dreaded bladder.

🌸

In late January of 2015 I would change the way I had a wee…forever. I was booked in to have a Mitrofanoff. A what I hear you say.  A Mitrofanoff is a diversion from the bladder out through a channel in your tummy button, or in my case just where my knicker line came up. If you have your appendix they will use that to make the channel, if not they will use part of your small bowel. Because my appendix was still there and healthy that was how they made mine. Then you use a catheter to self catheterise through that hole.

About two months went past and the new way of weeing was going drastically wrong. I was peeing out of my urethra with no feeling and sometimes it was a little and sometimes it was a lot. The Mitrofanoff still worked if I catheterised it but I was incontinent, at 29. Believe me tears were shed by the lorry load.

🌸

Medication was given as they said it could be spasms in the bladder and not the sphincter as that didn’t function. So I tried that, I’d have tried anything they gave me.  For about 3 months that helped then one evening I got up from the sofa took a few steps and woooosh all over the laminate floor was wee from my urethra and the new channel. The next morning I got on to the urologists secretary and said what next….

The answer they came back with was Botox into the bladder. I had I reckon 8 lots of it over a 4 year period and it was only effective for 3 months then I’d have to wait 3 months on a waiting list.  So there were times while waiting where serious wee accidents happened.

63D457DE-E0DA-41A7-805E-621C3C4BEEF4

At one point while doing my Botox there was a few bladder stones, which I was unaware that I had….also I dunno how long it had been there for.

With other illnesses sending me into hospital, some nurses were reluctant to help self catheterise me. It wasn’t as if I had to open my legs up. Because they didn’t help, wee accidents  happened. I was no better on from when I started getting bladder problems.

🌸

In March of 2019 we had to make the decision of a lifetime, to remove my bladder and have a permanent stoma – an ileal conduit is the right term and a urostomy ( a bag to wee into that’s attached to your tummy. I was under for 9 and a half hours. My bladder was stuck to my womb and bowel so attention to detail was needed to save the womb and the bowel while removing the bladder. It wasn’t the stoma they wished for as there wasn’t enough blood supply to bring it up and out so I was left with an innie that leaked and was a pain to look after as it didn’t have a spout to keep the bag comfortably in place. 

Back and forth to hospital for emergency appointments over the next 10 months was horrendous. So we had a chat with my surgeon and said what can we do to make things better as I’m at my wits end.

🌸

So the end of last month I had Stoma revision and mini adominoplasty. This was performed by a plastic surgeon and my urology surgeon. I didn’t have much fat to take away but the skin that they removed would allow there to be a smoother base and my stoma would have enough blood supply to come out like the spout I should have had first time round.

Next time I’ll chat about how it’s been since I’ve been home.

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.

D4BFC8AF-34D1-4A08-B059-0637CA7641B9
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.