Hi, I’m Laurence and I’m a 43-year-old father of a lovely 10-year-old girl, whom I have full custody of. It has been one of the hardest things I have ever done but also one of the most amazing and rewarding things. There have been lots of learning along the way, then came the most beautiful courageous woman I have ever had come into my life.
This is a detailed account of the 27th July 2015, when I had my bladder removed, an Ileal Conduit (Urostomy) formed and revision on my Ileostomy prolapse. Although I did acquire a few complications I still believe that it was the BEST DECISION I have ever made!
**Disclaimer: - Not everybody will have these complications after surgery. I do not want this post to scare anybody but I felt I needed to write a detailed account of what I experienced, how I overcome it and why I have NEVER regretted making this decision **
This can be a stoma related complication and in my case was caused because the spout was sewn too tightly to avoid Bob (my Ileostomy) prolapsing anymore. This isn’t very common, so I thought I would write some information about Stoma Stenosis and then include my experience of it.
**Disclaimer: includes a ‘F*** it’ Poem, requested by my GP **
I found out some sad news on Thursday, whilst I was waiting to have my burn looked at and dressed (2nd degree burn from peppermint tea!) I was bantering with my GP and was guttered, well actually more devastated when he told me the GP Surgery is closing in June and my marvellous GP will be retiring.
So this is another subject very close to my heart.
This post is not meant to scare anybody but includes my recurrent, traumatic experiences of Septicaemia and Septic Shock. It is paramount that everybody knows the Signs and symptoms of Sepsis and how the symptoms can present. Most of us with stomas are immune suppressed and can be at a higher risk of getting Sepsis.
I have decided to write a blog post about ‘How to Take a Urine Sample with a Urostomy’ after some issues that occurred during my last Hospital admission.
I have had to give urine samples on many occasions and many nurses have told me different ways to obtain this which, can be confusing! So I thought it would be a good idea to write this post about the BEST PRACTISE to obtain this.
*TRIGGER* - prolapse stoma images included
This is a very rare complication that can occur. I am sharing my experience with you, because it has been a difficult but educating journey and this could happen to any of us! This isn’t aimed to scare you, but to unite and inform ostomates about this issue, and to show that being open and honest is the best way to raise awareness and in my case to live with this prolapse! I'd like to add, that it has taken me a lot of courage to talk about this and post a picture of the naughty one! My urostomy is very cute and small but ‘Bob the knob’ my ileostomy, is the one that causes me endless problems but I need to be open and honest about the complications that have occurred for me.
In my experience this is ONE of the most challenging and painful questions, that can ever be asked when I meet new people.
Recently I have joined in on the #ostoMYlove June challenge of June’s Self-love month. Already we are now on Day 5 and I am getting an enormous amount of benefit out of this challenge. The challenge has brought home and has got me thinking about the act of gratitude and how grateful I am for so many people and the circumstances in my life. There is an amazing quote by Melody Beattie that says:
"Gratitude turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity...it makes sense of our past, brings peace for today, and creates a vision for tomorrow." Melody Beattie
I feel I need to write a post about how important “CONNECTORS” are for night drainage system.
So briefly what is a connector? Well as mentioned in previous posts, urostmates can have an option to connect up to a night drainage system at night time. This allows for a straight through sleep and to ensure that there is no back-flow to the kidneys. Not every urostomate uses a night bag but personally, I do and they help me not to worry about getting up in the night to empty Squirt. Generally, different manufacturers of the urostomy bag and night bag can be connected by the universal connector. Some night bags can attach without a connector but they may fall off when you move around. Connectors are amazing little things!!
It has been another exhausting day of surviving! My bed is calling...I've had an Epsom salt bath, comfy, pyjamas are on and I'm fantasising about spreading out on my belly all snuggled up in my bed...
That is until I remember about my 2 boys... Bob (my Ileostomy) and Squirt (my Urostomy) and soon that bubble is swiftly burst. It has been 7 years now since I have slept flat out on my tummy and am able to enjoy a straight nights sleep. I have, to be honest, that out of everything I have had to adjust with since my organs failing in 2008 I think after all these years I still yearn for a straight through deep, care-free sleep.
I felt I needed to write this post and clear up some confusion over terminology. I’ve now had Squirt for a year and a half and I’ve only recently become fully aware of the difference between a Urostomy and Ileal conduit.
So after much research and talking to the stoma nurses and Doctor I now have the answer!
We all used to have good veins at some point in our lives, didn’t we?
When a IV cannula would go in that first time and last the whole 3 days with no problems...bliss!!! Unfortunately though with chronic illness and regular admissions over time our veins are over used, damaged and start struggling.
Over the last few years, something magnificent has happened!
There has been a lot of coverage in the media lately about ‘Ostomy’s.’ Ostomates are people sharing their stories and fabulous pictures and proudly flashing their stoma bags. This warms my heart so much to know that the stigma surrounding stoma bags and Ostomy surgery is finally being addressed and changing the public’s perspective about stomas for the better; spreading a message of hope and acceptance to be proud of your stoma bags and that you can still live an amazing, happy life with one!
I usually get the same reaction when I tell people about ‘Bob’ (my ileostomy) and ‘Squirt’ (my urostomy). That look of blankness then laughter. However, there is a method to the madness for naming them.
First thing is first...why should we name our stomas?
Well I encourage every new ostomate that I meet to name their stoma’s. We name pets...cars...nicknames for partners. So why not something that is part of us?
Welcome everybody to rocking2stomas and we have lift off....!!
I cannot explain how much this means to me to share my story and finally achieve my dream after years and years of talking about it.
Over the last 9 years, I feel I have a degree, masters and PhD in dealing with my illness and appliances that have kept me alive! If just one person identifies….then I have done my job! I have found that only another person who lives with a stoma can fully understand the trials and tribulations we face on a daily basis.