Hi all, I'm new to this forum and hoping being a member makes me feel better as at the moment my head is spinning and I feel a little lost.

So I had peri-anal abscess surgery last October, my wound is still not healed and is still being packed every other day. I have been on antibiotics twice for infections in the wound. As it was taking so long to heal one nurse had my GP refer me back to the consultant at the hospital. The referral took one month. This morning I saw the consultant who said that he planned to book me in for an MRI scan and also an operation, just so that I was on the waiting list. He then performed an examination on me and when he'd finished said, "well there's no need for the MRI, you have a fistula." He then went on to explain that it seemed like a simple one, quite near the opening to my anus and that he thought after surgery my recovery would be good. He then said that he had to also tell me that surgery in some cases can result in fecal incontinence.

So I am now feeling like I've wasted 6 months of my life waiting for a wound to heal that was never going to because it was attached to a tube effectively putting something that creates infection straight into it.

Let down by a lot of nurses and Doctors who have been packing my wound and prescribing me anti-biotics, for something that could be diagnosed with a basic anal examination.

Angry that I was made to feel like I wasn't looking after my wound properly when a nurse found faeces in there, which it turns out was coming from inside me.

And lastly petrified that I'm in my early 30's and could end up incontinent.

All in all, it's been a pretty sh*tty last 5 hours.

Hi Whyme. Welcome to the forum nobody wants to have to join. This place makes me feel a lot better as the people here are so kind and supportive and are we are all suffering together. I am very sorry to hear of your awful experience with a crappy medical system. From this forum I have learned that the UK system is much broken like ours here in Canada, with long waits and medical 'professionals' that give you the run around. I also got the run around after my LIS surgery when I developed an agonizing abscess as nobody believed me that it was infected and then they didn't believe me when 3 rounds of really strong antibiotics didn't take care of it. Finally my CRS found that it started a tunnel (a sinus, which is before a fistula forms another opening) and I had to have a second surgery where they 'unroofed' the area and I am still healing from it 11 weeks later. So all in all I have lost almost 6 months of my life here too, on a surgery my CRS initially said would take 2 weeks to heal from.

I have to say though that your fistula may have formed at any point along the way but your medical professionals should have been looking for it as 50% of abscesses go on to form fistulas. I really hope you are getting the care you need now and that it is quick and not too painful. When are you booked for surgery? Is your Doctor who is going to operate a very experienced CRS? You will need that to ensure you minimize the chance for incontinence.

Hi msimon, thanks for the reply.
I really don't know when my surgery is or who the Doctor will be. I have to wait for a letter from the hospital with an appointment first. The Doctor who saw me yesterday had no idea how long that would be as it all depends on waiting lists etc. It's so annoying and makes you feel so helpless when there's nothing that you can do personally to fix this or hurry the system along.

The weird thing is that the wound from my original surgery is the best that its ever been since the first operation, so I thought that everything was looking good. Yesterday was a real kick in the teeth.

I will be seeing my nurse on Monday and I will see if she can give me any advice on timescales of waiting lists etc.

I know what you mean about feeling helpless. I have to really work on being at peace with that because it can really tear a person up. It's nice to know we are not alone in this.

I also know what you mean about the wound looking the best since surgery. When I went in for my unroofing surgery, my LIS site had finally almost healed, expect it was so painful, swollen and infected. But the skin had finally healed. The surgery that followed was the worst pain ever and the LIS was really painful for me so that's saying something.

I hope your nurse can give you some information to put your mind at ease.

WhyMe, are you in a position to consider going private? You could be seen a lot sooner. PinPin on this forum flew to England and had surgery done for around 3000 pounds. You can read about it in his thread
non-healing-wound-or-chronic-fissure-t6815-90.html
He describes a consultation meeting with the doctor on Aug 9th 2013. I think he describes the surgery itself in a different thread.
Anyway, if you have some money saved, it's worth thinking about.

Hi WhyMeUK,

I have sort of a similar story. I had an abscess, seton (done by French surgeon #1, early March 2014, with packing by home nurse), supposed recovery (as told by French surgeon #2), then abscess and fistula surgery again (French surgeon #3, mid May 2014, packing again), then supposed recovery (French surgeon #3 and American GI doctor), and finally abscess/fistula/hemorrhoid surgery (American CRS, late Oct 2014, no packing, only sitz baths 4+x/day) which has proved to be a success so far! My total recovery time from my last surgery was just seven weeks!

From mid-February 2014 (when my GP told me I just had hemorrhoids, instead of an abscess) to my surgery in October 2014 I was so miserable and uncomfortable and sure it would never get better. But it does! I've had three surgeries in the area (and of course it is different for every patient) but I haven't lost any muscle tone in my sphincter (I'm young, too, 23). I feel completely normal again. Except for not being exactly "whole" down there anymore...

There is a light at the end of tunnel! But I know when you're going through it, it's hard to see it. I hope for you, second time is a charm :)

Again, thank you all for taking the time to reply. I found this forum when I was searching the internet in a bit of a blind panic and my initial post was a bit of a rant. But it's been really helpful. I'm feeling so much more positive now.

Looking at your signature msimon it looks like you've had problems for a while, since February how have you been?

Scientist2516 private is something that I am considering and something that I'll talk to my nurse about tomorrow. I'll report back on that one.

heartofitall, you've actually put a smile on my face. I hope I can report back with a success story like yours and that you never have any problems like this again. God it's a lot to cope with at 23, I don't know what I'd have done at your age!

I keep saying I'll talk to my nurse tomorrow, but then I think should I trust her judgement anymore? She's been packing my wound for four months, should she have spotted a problem?

Hi WhyMeUK....quick question- do you have Crohn's disease or anything similar? If not, I highly suggest just getting the fistulotomy to get the fistula taken care of. If you do not have any health issues otherwise, the recurrence chance is very small and the wound is not painful (although it will take around 3 months or so to heal...maybe a tad more or less depending on the size and your own healing). If you smoke, stop immediately and try to refrain from heavy drinking during the healing period. If you don't have Crohn's or anything similar then you WILL recover.

Thanks for asking WhyMe. I am still struggling to heal from my last surgery, now 11 weeks ago. I really can't see the area as it is covered by swollen skin flaps I dare not pry since my last bleeding so I have to assume it is healing.

How did it go with your nurse? Did you find anything more out?

Hi Cporosus1 and thank you for your positive response. No I don't have Crohns and don't smoke. Probably drink a bit more wine than I should at the weekend, but that's about it. I'll look up the fistolotomy, as I'm not even sure what that is or if I'll get a choice of treatment. After my last surgery I didn't drink for a few weeks as I know that abstaining aides the healing process.

I hope that you get some joy this time msimon! I feel for you.

My nurse said that she had suspected a fistula with the lack of healing that my wound was doing. But she'd used a probe to have a look inside for evidence of tracking and not found any. I didn't discuss going private with her as there seems little point until I get a letter with my appointment on and know what timescale I'm looking at.

I'm emailing the consultant tomorrow to ensure that they know I can be with them at the drop of a hat as I believe this gives you a good chance of getting on the cancellations list for surgery.