I do find it difficult to explain what a perineal-vaginal fistula is, mainly because fistulas usually connect to the colon or rectum which I don’t have. It doesn’t really have a name like other fistulas.
ENTERO -Meaning bowel or gut, it links different parts of the bowel.
VESICAL- Links to the bladder
CUTANEOUS -Links to the skin.
RECTO_VAGINAL – Rectum to vagina
PERINEAL_ VAGINAL – mine, I try and google but it never comes up with very much.
There are others but less common with colorectal fistulas.
My body decided regular bodily functions were just too mainstream. Imagine your body wants to make a new hole for no apparent reason? in my case from where my rectum used to be connecting to somewhere it’s not supposed to go. When you think you are prepared there is a surprise leak. Forget nice knickers, it’s all about the swabs and pads. It’s worse when the days come that the fistula decides to work overtime. Pain and discomfort are the norm, and a lot more toilet trips with leaks.
You have to try and stay upbeat otherwise you could go down hill rapidly. As I have said many times, there is no help between appointments which can take months / years. As for mental health living with a fistula? forget it.
So here I am navigating life with a bonus feature, embracing the chaos and the ugliness. We have to make the best of it and await the next chapter.
A little ( or not so little) update about my stomal fistula.
You get used to a stoma over time when out the blue your body says you know what lets make another hole. You are then introduced to the not so glamorous world of a stomal fistula. As you can see from the photos, it started off small but now is too much.
I think Tomas wanted a companion, so I have an extra rogue to contend with, you start with regular stomal output but my fistula wanted it all so now my output is only from the fistula.
I have become a stoma bag wizard, matching bags with rings with barrier sprays and healing gels.Like building a dam to coax the output into the bag rather than out the side. These fistulas have taught me resilience and strength I didn’t know I had, but I welcome more help from the NHS.
Hello Clare,
Bless You for continuing to blog and run your Thomas Stoma Site – You are a Warrior for so many of us and our heart felt gratitude and supportive wishes are always with you.
I appreciate that you have been to St Marks – and as such have had referrals and undergone many interventions with ongoing complications after a time of hopefullness – You are a steadfast and truly special person – for I among so many know just how difficult such times are – when we find exhaustion a daily occurance and find it such a strugggle to hold onto Hope!
You wish for more support through the NHS – Have you [on top of your current Medical Team] thought of persuing a further Medical Oppinion? I say this, not to throw any doubt upon your existing of past Team Members – but just as a general thought in the belief one never ‘knows’ if one does not take a leap of faith at times [and I mention this, in a veru cautious manner too, as a leap of faith sometimes needs much research to aids its wiseness. Just a thought – For I feel sure, you may have considered many possibilities from your current perspective.
Kind and best intentions are sent.
Your sharing is a testament to your dedication, love for your Family and Friends and genuine compassion, through your own empathies with your fellow Patients.
I was delighted to learn of your Volunbteering and your involment helping others navigate the paths we travel.
I send my ongoing BEst wishes and trust that there is a light within your tunnel.
Thank You for Sharing.
As Autumn leaves carpet the ground and the sun lights up an array of colour, Travel Well, and stay cosy as the days shorten and winter months beckon us indoors. I hope you find comfort and taake a ‘companion wave’ – knowing you are by no means alone.
Hugs from the Hills
Take Care
Jayne
I’m sending best wishes from Canada. I have a similar issue. I was wondering if you would be willing to explain to me in more detail how you are able to “direct” the output to go into the bag and not down the sides of the stoma?
Hi Jeff
I firstly havea convex bag which is very helpful and is dips in just under the fistula, I use an Eakin cohesive seal ( before putting bag on) which helps with any output on my skin. The convex I press for a good minute particularly right near the fistula to seal it as much as possible.
That’s a great suggestion.
I’ll give a convex flange a try.
Thank you.
Thanks for the explanation.