My Fistula Journey!

Oh my, where do I start!!
In July 2019 I went to work and could feel a strange ache in my inner thigh in my groin. I was not sure what it was but it was sore and radiated pain to my hip and different places and I was not sure what it was. My company did not care and commented that I was going slower than usual. Anyway, this carried on and I went in the next day getting worse and a lump coming up between my legs. By Saturday morning I was being sick and feeling really bad but was on my own at home as my husband had gone to Perth with my daughter to buy furniture for her new house.

Luckily, a friend from work called to see how I was as she was worried. I was on the floor, after being sick and just staring at the floorboards, feeling as if I was going to pass out. She came straight over and took me to the emergency. The lump was not very big and I had sepsis. It was an abscess. I went to the theatre and had it drained and a CT scan. I got home and then went to see the surgeon who told me I have two fistulas, one to the front and one to the top of my bowel from the perianal area. He wanted me to go and see a private surgeon who was a friend because he was a specialist, which this surgeon did even though I did not have private cover. I went to Perth and the surgeon told me straight away, 90% I would more probably end up with a colostomy bag as this was a complex fistula. I had never even heard of a fistula!!

What followed over the next two years, during covid, was 14 procedures and surgeries. Cutting the skin tunnel open, having very hard drains sticking out between my legs which tore my skin once getting out of the car, the wire was like garden strimmer plastic wire, very uncomfortable and when you went to the toilet it was horrendous pain. I eventually realised from a help/support group set up by Wendy Butler, that if you had a hat (a basin that fit over the toilet) ready, and sat in the warm salt water straight away it did subside some of the pain. I ended up with a colostomy bag for nine months and a hernia.

One of the main stresses about this condition is that no one knows about it or very little. After my first operation, which I was alone for because of covid, I was told my doctor would look out for signs to be concerned about, but when I said I was hurting and draining lots my doctor actually said she did not really know anything about fistulas and was that normal. I said that she is supposed to tell me if it is infected or inflamed and what to do but I actually went home and googled ‘Fistulas’ and took the information for her to read and she was grateful. How am I supposed to know if everything is ok if the medical doctor knows nothing about the condition?

It is a very stressful and debilitating disease, it caused me to gain a lot of weight and I lost confidence and I was told, by my manager, I could not go back to work if I had a ‘bag’ which did not help or being actually laughed at by a junior doctor when I went to ED in pain and could feel a blockage or swelling again inside and a part of my genitals had swollen and I lay there, legs open, feeling embarrassed anyway, and saying that the specific part of my genitals was not usually there and that big and he said ‘that….you don’t know what that is??!!’ and laughed at me and I cried. I put in a complaint about him. I explained that I knew what that part of my body was but it was not usually like that. I felt humiliated.

I used humour to get me through and told people what I was having done, it was my way of coping but I remember having one of the ops and flying back to  Geraldton the next day. I thought I would be ok, but just sitting in the taxi and a few hours on the hard chairs at the airport, I was not. I got to Geraldton and as soon as I saw my husband I broke down, in so much pain and I’d had enough.

A colostomy and hernia though, were still to come and after having sepsis twice and flesh removed which has caused me slight incontinence, and having C Diff which I caught in hospital and had to be shut in a room on my own, my body had had enough. I was feeling very low at this point and lost my job too. A colostomy bag was put on to give my bowel a rest. I had one operation one day and the surgeon said your body has had enough and we need to put a colostomy on. You have until tomorrow morning to decide. Again, I was on my own through this and called my husband to make that decision. I am so lucky I had support at home, it is not an easy adjustment and some of the stories of people’s partners leaving them over their ‘bag’ made me sad but angry too, as they were not going through this horrendous illness.

This is such a terrible illness and can affect people very young and old. More awareness is needed about it to help the person going through this. Sometimes when you have setons in, it hurts to walk or sit and going to the toilet is frightening. Education is needed and support for people going through this as it does affect your mental health too, it’s awful.

I want to thank Wendy for helping people like me, it is SO important.

I hope this helps xxxx

Sandra D. (31/10/22)