Fistula

Fistula from abscess

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Re: Fistula

Postby Brians » 11 Aug 2015, 20:20

Update ,
Still draining still sore feels like something up there possibly swelling ?
No better than before surgery .
Cramps and aches constantly bm becoming difficult again and odd stabbing pain .
Gone on so long like this now after so many docs and nurses I just couldn't care less anymore what what is or isn't done .
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Re: Fistula

Postby jobber » 12 Aug 2015, 02:20

Yes, couldn't agree more.
I suppose it is not a very glamourous arean of medical expertise and there isn't a lot of money to be made from it by the pharmacological industry, so things remain the same in terms of practise and technology.
The surgeons only seem interested in the surgery process and disinterested in any remidial treatment not involving surgery for the care of fistulas prior or post operation. There is a very narrow focus on their part, I'm sure if they had one it would be different.
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Re: Fistula

Postby Brians » 12 Aug 2015, 08:40

Ever since this all started for me the overwhelming majority of advice and discussions with medical staff has
Drifted between patronising ( the charm offensive to disarm you ? )
And the "this is getting dealt with" with comiting
To saying how or can it be fixed

If I'm honest all but two perhaps three nurses were honest in their attitude and advice
But could not be definitive in any way as they
Only did aftercare I guess .

It's an abismally vague and desperate situation
The crushing frustration and stress is worse than the fistula or at least another symptom
And nobody appears to give a crap
It's wait n see, wait n see and wound looks ok
Or let's do another bloody useless test to look at It ,
I've had enough of exams docs know it's there they put a flaming band through it for goodness sake it's location isn't. Mystery so why not stop
wasting patients time and stressing them out ,
I'm sure I'm not alone and in fact I'm not as badly affected as some poor souls but this is
Beyound medieval in an age of stem cell research and bionic eyes .

Maybe patient complaceny based on being bombarded by charm offensive driven docs is partly to blame
It all comes down to getting the dam things sorted asap not a smiling listening and ultimately ignoring and same old same treatment is it ?

When I said I was not happy about a seton I was ignored by one surgeon and got a smile from another I woke up after surgery with seton
Which had to be fitted it was the done thing it was vital ,
Yet when it fell out after 3 nearly 4 weeks it was laughy smilies that's ok don't worry happen all the time it will be fine don't worry .

Yknow a facepalm isn't enough sometimes .
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Re: Fistula

Postby Brians » 12 Aug 2015, 08:44

Update ,
Have three guesses .

Still same .

Giving this till end of week and I'm back on bike
To hell with advice it hasn't done bit of good so far it's my body not ttheirs .
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Re: Fistula

Postby Cporosus1 » 15 Aug 2015, 09:26

Hi Brians,

Actually a low, simply fistula is very easy to fix. A fistulotomy is approximately 95% effective if done properly. You need to go to an experienced colo-rectal surgeon that is good at this sort of thing. I had a fistulotomy in January of this year, it took 3 months to heal but now I'm almost 8 months out and the only thing that remains is a scar. My uncle had an abscess followed by a fistula and he also had a fistulotomy...that was 4-5 years ago and he also has experienced no problems since then. There are dozens of people on this website with the same types of experiences. Most peer-reviewed scientific trials following patients after fistulotomy report the recurrence rate at 72 months as around 5% (ranging from 0% in many cases to as high as 21% in one case, although that case involved patients with Crohn's disease).
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Re: Fistula

Postby Cporosus1 » 15 Aug 2015, 13:08

By the way Brians...which country are you in? I know in some countries fistulas are considered "low priority" and are given to less experienced surgeons and thus the rate of recurrence is much, much higher (in the 30-40% range) because they don't know how to properly remove it. The primary reason for my previous post is to make sure people who come here looking for help with their fistula know that serious problems and recurrence is low in the vast majority of people with low/simple fistulas. Its important for people not to become terrified and think their "life is over" and that they will "never be the same" because of the horror stories they read online.

I was one of those people; after scouring the web for information I was terrified and thought what I had was a life sentence and was like cancer/worse than death. That was, of course, not the case...and all that horror was for nothing. There's still a small chance mine could recur (I'm almost 8 months post-op and almost 5 months post-complete healing), but I'm optimistic. Many people with horror stories online have Crohn's disease, which makes a fistulotomy very difficult to heal and it is actually not recommended for people with the disease (a permanent draining seton is instead recommended).

The important, vital point- the vast majority of otherwise healthy people who have successful fistulotomies will not have a recurrence and will heal in about 3 months (depending on the depth).

Another important point; I've seen people online in Crohn's forums before trying to claim that I "must have Crohn's because I had a perianal abscess"...this couldn't be further from the truth- the vast majority of people who get perianal abscesses DO NOT have Crohn's disease. The reason it is so commonly associated with the disease is because most people who DO have Crohn's disease will develop a fistula which creates an abscess.

I hope I have been helpful to everyone. And, Brians, if I were you I would visit another CRS. Leaving a fistula untreated can eventually result in more than one tract forming and it becoming much more complicated/difficult to fix in the future.
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Re: Fistula

Postby Brians » 16 Aug 2015, 09:01

I'm in UK my crs nd his tem is rated as one of the top guys in UK .

I have cycled all my life ,
now I can barely sit on a bike let alone cycle
and wall I hear is there hope we'll show me one person fistula free after one treatment all I see is recurring fistulas or sections in place for years nd medical voices say wait n see and lets take this one day at a time ,
I've had this 8 months any idea how many days that is I've waited to see .

If you play golf watch sports or like watching movies and tv then fistula might not cause that much change in your lifestyle but for a cyclist etc like myself it's hellish ,
do you know one nurse said to me try and get some excorcise while I had packed sound nd seton that caught on sticky bit of dressing everytime I moved , when I pointed this out she said well now you have an excuse to lay around for a change with your feet up .
Nobody forced me to cycle duh .
It just doesn't matter what you say theres n excuse or patronising comment on standby .


I've nothing but utmost respect for anyone suffering from fistulas but I think time for complaceny is over if this was an openly discussed co edition there would be an outcry and stream of news items about it instead there's almost self help and a treatment script hundreds of years old used worldwide by every
Medical org private of social .
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Re: Fistula

Postby Brians » 10 Sep 2015, 04:52

Phew where to begin probably with apologies for being so grumpy ,
Ok had biopsy came back positive for crohns
Another biopsy booked and Mri fistula put on hold until tests are done ,
crs agreed seton did little and won't replace it at this stage .

That's about it , more waiting for appointments meanwhile more pk and lax ,
I was weighed and came in underweight at 9.5 stone I thi k some diet restrictions don't help I think.
Crs was great had long chat with him about health back to childhood and he made appointments with his dept so I don't need to go through gp ( I think word got out how much I resented going there as I never mentioned it I Gies my apprehension wasn't as well hidden as I thought ) which suits me better .

Moods much better a simple no Bs chat with surgeon helped I think .

Thanks everyone .
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Re: Fistula

Postby Cporosus1 » 10 Sep 2015, 16:16

Hi Brians,

I am very sorry to hear you were diagnosed with Crohn's but at least now you know what it is and can fight it properly. It explains a lot though, since more than one tract and a failure to heal are usually calling cards of Crohn's. I wish you a speedy recovery.
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Re: Fistula

Postby Savaici » 15 Sep 2015, 18:56

Glad you got some answers, Brian!! Let us know how it goes. I also have an auto-immune disease.
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