When I had my original stoma surgery I never dreamed I would be in this position nearly 8 years later.
After the IGAM flap surgery I thought that might be it with the big surgeries, but it seems not.
I have been informed that I have a pelvic collection 4cm x 5cm that links to the back wall of my vagina creating a large hole that the infection has created. I don’t really have a back wall at all now now. The collection then passes out my vagina.
Things have now changed slightly, as I discovered last Thursday, a new hole has opened up in my flap scar ( where my rectum etc used to be) and I now leak out of that. I had this before the flap surgery so I can now assume that it failed. I have to roll up swabs and tuck them between my bum cheeks to catch the flow of gunk.
My surgeon has just spoken to me and said he would be truthful and that because I have a very rare complication seldom seen, he is unsure how to proceed, and after discussions with colleagues he said that the only solution is probably to open up my long tummy scar again and start removing all the infected tissues and open my bottom scar again and do the same from that end. It would be a massive surgery he said. I may need a tummy muscle removing or another type of flap surgery but he made sure I was aware how much of a big surgery this would be.
We have decided that he will write to St Marks hospital in London as they are the leading consultants in the field and may have someone there, who is willing to take me on. I am very nervous with what the surgery may be but hope someone there will know how to sort me out. I absolutely like my new consultant and feel that he has drawn the short straw with me, having taken me on after my other consultant retired, and not being a part of the other surgeries. He has said that he is unsure at the moment how to help me except his proposed surgery and agrees that is would be wise to see if I can have someone with exceptional knowledge of my sort of complication.
He understands the effect this is having on me, physically and mentally and wants to help make me better in any way he can, and I can only wait for news from St Marks. I am scared, tired and put on a brave face most days.
To look at I seem absolutely fine, but underneath I am not fine and I would like to think I hide it well. Only a select few know the full extent of living with chronic ill health and I have great support so am one of the lucky ones.
