As it is so helpful to hear the experiences of others, I thought I would share my experience of the last 2 years……
I went to the doctor in December 2009 because I had a sore patch on my bum cheek that felt like it was quite far under the surface. The first doctor I went to told me it was a boil and prescribed me with antibiotics. After taking those for a week, nothing changed and the pain started getting worse, so I went to a second doctor. This doctor told me that it could be an abcess and that I should try taking a different type of antibiotics, which I did for a week. This also didn’t work. By now, the pain is very bad, and I was meant to be boarding a plane in a few days time to Australia for a 3 week holiday which I had already booked and paid for. I decided to go and see a third doctor for yet another opinion, she told me that it was definately an abcess and that I would need to have it lanced, but that it could probably wait until I got back from Australia. She gave me more antibiotics, this was the third different type of antibiotic that I had taken, and meant that I had been on antiobiotics solidly for 8 weeks. Because the antibiotics stripped my body, my immune system was in a very poor state and I was subseptable to bugs. A few days after seeing the third doctor, I woke up one morning and the pain was severe, I called my sister and she came over and took me into the Emergency department in the hospital. The doctors put me into a hospital bed and started to give me morphine, they did an examination and decided I needed to go into surgery. Needless to say I had to cancel my big holiday and lost money on that.
I had a wait over night in a ward on morphine before I could get into surgery, during which time I contracted a superbug because my immune system was so low with all the antibiotics I had been taking. The bug I contracted was called Clostridium difficile, it is is the most serious cause of antibiotic-associated diarrhea. As this bug is extremely contagious, dangerous and in some cases life threatening, the doctors put me into an isolation room where I stayed for 8 days.
I was taken in for surgery where the surgeons drained the abcess and placed a seton through the fistula that had occured as a result of the abcess infection. By the next day, I had gotten worse so they put me into surgery again, this is when they found a second, larger abcess which they also drained. I remained in isolation until my vitals all became ‘normal’, I was then sent home 2 days before Christmas where I stayed resting and a district nurse would come around and check my wounds where the seton came out.
I was told that I could possibly have corrective surgery in 6 weeks time, this was not the case. I had further surgery in February 2010 where they replaced the seton. Then in July I started feeling very sick again, and noticed further pain in my bottom. I went back into surgery where they discovered I had a second fistula. They placed another seton inside my body. I then had to live with two setons, both of which were in a loop going through my anus, through each fistula, and out the exit hole in my bottom cheek where the fistulas ran to, and tied together in a big knot. Setons are hard to live with, they’re uncomfortable, painful. It changed my life because I’d always been so active, but I found myself unable to exercise, having to live my life at a slower pace, working shorter hours and not socialising as much.
The surgeons thought that they could do my repair surgery in November 2010. Once I again I had bad news, the infection had spread again and I would need further surgery to drain more pus and re-place the setons. I was having to take a lot of time off work for all of these operations, which put my annual leave into arrears, and I spent my holidays sick in bed.
Finally on Christmas Eve 2010 my surgeon called me and said that they were going to do the repair surgery in January 2011. I have since had the advancement flap surgery, this has a 50% chance of working and is very painful. The surgeons folded a flap of tissue back over the two holes where my fistulas started, they then stitched around the flap with disolvable stitches. It’s been 2 weeks since I had surgery, my surgeon suggested taking 3 weeks off which I have done. Bed rest, healthy food, lots of water and sleep, plus plenty of pain killers! I am feeling good so far, I had a 2 week check up where they said that the flap looks like it is taking and attaching itself, so that is good news. The pus and blood is slowly drying out and I am not having to change the pads as often, and I’m starting to feel a lot brighter in myself.
I am starting oxygen therapy next week which will hopefully help the flap to take better, I want to give it as much of a chance, the 50% success rate makes me anxious, but staying positive is key.
So after 14months of pain, embarrassment, awful examinations, 6 surgeries under general anesthetic and a lot of time off work, I seem to be finally getting better. I will keep you updated with what happens, and please share your story on this website, as it’s so helpful for other fistula sufferers to know that they are not alone.
All of my surgeries were done on public health, so did not cost me anything. If you have full health insurance, you should be covered and should be able to go to a private clinic. If you chose to go private without insurance, it will be costly. I discovered that the surgeons working under the public health system were the same surgeons that were working in the private clinics, so it made no difference to me whether I went public or private. The only difference would be that you would have your own room in the hospital and better food!
UPDATE - 3 weeks after surgery and I am experiencing shooting pains through my bottom cheek, I’m also bleeding when I have a bowel movement, and I have a very hot pain in a localised area on my bottom cheek. I have made an appointment to see my surgeon so they can check that everything is ok, will keep you posted.
UPDATE – 6 weeks after surgery and my wound (exit hole) on my bottom cheek where the seton came out burst open!! I got a massive fright, it was so painful when it opened, and there was a lot of blood coming out for about 12 hours. I went into hospital and my surgeon said that it can sometimes happen because the tissue is so thin and it takes a long time to heal over properly. Still not sure if my flap is healing but he said that everything seems to be on track so far.
UPDATE – So it’s been nearly 6 months now since my surgery. I had six weeks of Oxygen Therapy, which really seemed to help me, it felt like it was drying my fistula up and helping me heal. I had a check up with my surgeon a couple of days ago. And he said that it looks as though my FLAP or LIFT surgery has worked. BUT I have a wound sinus. A wound sinus is a small tract through a wound that can hold infection. So unfortunately, it looks as though my fistula hasn’t healed properly, and this could potentially make everything bad again. My surgeon booked me another appointment in another 2 months and said they only thing they can do for now is keep an eye on it. I am in pain again though, and feel like I have a small infection so will probably do another course of Antibiotics. The saga continues!!
UPDATE – OK, so now nearly 8 months since my surgery and I have been on antibiotics 4 times to try and keep from re abscessing. I went to the doctor on Friday and she believes I have another perianal abscess. As you can imagine, I’m really devastated as this could mean I will have another seton placed in surgery. I have been booked in for an MRI scan which I will hopefully get in the next week or 2. After the results come back, my surgeon is going to decide what surgery I will need.
UPDATE - My surgeon sent me off to have another MRI scan a couple of weeks ago. I have had the results back, and he said that I have a ‘Wound Sinus’ which is dipping into my advancement flap. There’s nothing they can do at this stage other than keep an eye on it to make sure it doesn’t turn into another fistula.
I find that some days I have pain that feels like an abscess, and other days I don’t. It all relates to what I’m eating, how busy/stressed I am, and if I’m doing any exercise.
They put me on 10 days of Antibiotics and that seemed to clear up the infection (abscess), so at this stage I’m not having surgery. But my surgeon told me to come in straight away if the pain comes back, and he will operate immediately to drain the infection out.
I’ve moved house and am now living right next to a park. So I’ve been walking around the park every day, not fast, just a leisurely walk, for about 30 minutes, and it’s making a HUGE difference to the pain. I think that the blood circulation, the oxygen and the muscle regeneration is all helping me keep away any infection. So I would suggest trying it, if you have a seton, just walk slowly, and don’t go too far, take deep breaths and move your arms to get your heart pumping. Maybe try it for a week or two and see if it makes you feel any better! Let me know if it does!! :)
UPDATE – So I’ve had about 6 months of no pain at all, and then all of a sudden 2 weeks ago, it all came back! I’ve been on Antibiotics for 2 weeks now to try to settle the infection. And I have an appointment with my surgeon next week. Hopefully it will all be gone and I won’t need surgery. But at this stage, my bum is very sore, so I have a feeling something is wrong. I’m trying to be positive and hope for the best. As well as keep my walking up. I’ve decided that the best thing to think to yourself is “If you need surgery, so be it. You just have to do what you have to do, and it could be worse, so just smile and get on with fixing the problem” :)