Hello, thanks for the reply, it good to see I’m not alone with this and I’m sorry to hear you’ve had a lot of bad luck with it.
It does appear that fistula’s are tricky to heal. My surgeon said I will likely have to at least have a temporary ileostomy if it is a fistula to allow the pouch to heal. Last time I had an end ileostomy but I would imagine this time it would be a loop. The thought of having to go through that healing process and relearn what food I can eat again is something of a nightmare. Other than the suspected fistula my pouch is usually functioning fine, I’ve had a few bouts of pouchitis recently but I usually enjoy a normal diet.
I had an MRI last week and it showed no evidence of a fistula. My surgeon seemed confident it would show up on there and I think he believes I’m imagining things. I am due to have a further procedure under anaesthetic for them to look at this further but unfortunately with living in the UK I have to wait a long time for this as it will be done through the NHS. Seems if you don’t have cancer you fall to the bottom of the priority list in the NHS.
I am still convinced it’s a fistula. My pouch was irritated after an examination last week and was bleeding and this was also coming from my vagina. It stopped bleeding for a day and then started again and when it did start again the blood came from my vagina. That’s enough confirmation for me.