I am in a predicament
I have had two VAFFT surgeries in London, and although my consultant there said it might take a few to help, I was sceptical. After all it has been eight years living with the damn fistula. He made sure I understood that they were not a cure but a chance of an easier life, if they didn’t help at all then I would need another flap surgery using the other thigh muscle and bum cheek. I really want to avoid that if I can.
There have been times throughout those years when the fistula would seemingly heal for a time, but it would ALWAYS come back.
You get fed up constantly cleaning yourself up or rolling swabs between the cheeks of your bum. Pain at times when sitting or standing. Not forgetting the awful medical photo I had to have.
Anyway, the leaking has stopped ( for now ) from the back fistula so I am unsure whether they can do the VAAFT procedure as they go through that fistula with a scope. I am still leaking occasionally form the lady parts as the collection of pus and nasty stuff was between the two parts.
I have called St Marks and am awaiting a call from consultant or his registrar ( but because of the recent strikes I’m not holding my breath anytime soon ). I think the outcome will be is to wait and see which I am ok with this for now, as long as I have a good line of communication with them. I have no doubts os the possibility of a return of the fistula but have my fingers crossed.
Life with fistulas of any kind are a nightmare because they are so stubborn and need a lot of care and surgeries to even remotely relieve the burden. Here is a link to the Crohns & colitis website page helping people to understand what a fistula actually is.
Edit, one of his team has called and said I still need to go for the surgery as it might have just closed at the exit and the fistula will most likely still be there. The can’t say for sure until they look, so another journey to London next week. Whatever happens I am still leaking from the vagina where the collection is at the top so will see what they say about that.
Oh Clare 🫣 I agree fistulae are the worst thing ever , yet no one has an idea what we go through. Mine is on my abdominal wall caused by a hysterectomy. It’s the bane of my life and I wear two bags, one for the fistula and one for my long term stoma. I don’t know what I’d do in your position, although I can see your edit. They are so difficult to cure but as you are under st marks you are in the best place. It must be horrendous for you, I had tracts in to my vagina and it was worse than anything, I’m so sorry.
Ironically the inflammation caused by the fistula has affected my eyes and I now have cataracts – awaiting surgery and I’m terrified. WHO knew the gut and eyes are s connected !
Whatever you do my thoughts re with you as always x
Hi Lauraine, thank you for replying, it is such an ongoing thing, and a lot of the time I can manage then bang, it comes out constantly. The abdo wall one sounds dreadful too and I hope that it will heal eventually. x