Advice needed | Living with an anal fistula

Hi, just wondering how it went?  It's been four months since you wrote this so hopefully things are looking positive.

I had a perianal abscess drained last week in an emergency op.  At the same time, they put in a seton thread to keep the fistula drained.  I've now been worried that I'll be spending months in constant pain if I have to have several operations to resolve the fistula.  I think they intend to do the lay open method but I'm really scared about risk of incontinence.  I'm hoping I can persuade the surgeon to try other methods that don't carry that risk, even if they're quite new methods.

I had a perianal abscess, had it drained and then packed every other day, but it healed too quick on the ouside and i was left with a 0.5cm hole so had to have it done again. They did an exam - no fistula but now a year later, a tiny hole has appeared on the middle of the x shape incision that was made to drain the abscess. I thought it could be a fistula, but at checkup all ok. I am scared of fistilotomy surgery due to incontinence. I am sooooooo worried. 

How are you?

I'm going through the same thing as everyone here. Mine started with one abscess which I neglected and hoped it would just go away.. that was a huge mistake. Long story short and two surgeries later plus 5 setons I must tell you I feel amazing! I'm much better now and it's only been three weeks after my first surgery- I had another seton placed four days ago but it's healing nice. Don't be afraid of surgery.. it's hard at first and recovery takes time and patience but I promise you it's worth it and you will feel better. Mine are so bad because I have Crohn's disease. I start remicade in three weeks to hopefully help close the fistulas. Stay positive and know your not alone!

Hi all

I have good news!

I have reached the end of this ordeal!

It has taken me 8 months for the whole process.  

It all started in Sept 2015 with a large anal abscess which was drained, this formed a fistula,  then in December I had another operation for insertion of  one seton, this was review and tightened in Februry 2016, and the seton was removed in April after it had basically grown through all the tissue and muscle, and became superficial enough for the fistula to be laid open.  It has now healed shut,  I still have a large scar but this will close properly in time.  I am still careful not to sit to roughly or put too much pressure as the scar is still fragile for about a year but ITS HEALED!  I am back at work and life is getting back to normal. 

Looking back I now understand that the seton is probably the best way to get rid of this as it grows through all the tissue including the anal sphincters and once it is superficial enough the laying open was the best for me as it heals completely.  There was alot of sloughy tissue once the wound was laid open but that dissapeared with all the dressings and became clean.  The seton was tightened/shortened every 2 months up to the point it was superficial enough. 

My saving grace I think is I am NOT diabetic, otherwise this could have played out differently. So diet has played a huge role in my healing. No fast foods, all "clean" healthy food, avoided preserved foods and limited my carbohydrate intake.  More nuts seeds and roughage;  avoid constipation. avoid sugars.  Basically sensible eating.  

All I can say is it takes alot of patience and keeping your head together, financially it took its toll too.  Fortunatley I had some major saving as a back up otherwise I would have been in deep sh*te.  

And of course I was treated in the NHS,  my colerectal surgeon and the team was amazing. They needed alot of patience with me as I am not the easiest person.  So ask the right questions and need to trust the surgeons. Find out if they work in Private hospitals too as most surgeons work in HNS and Private healthcare. Find out reviews about them.  This helps make decisions. 

I hope this will never come back. It has been an ordeal. 

Glad you're better. I had a large abscess last year, now I have a tiny hole on my scar which I think could be a fistula. Pretty worried about incontinence though. 

Hi Birdie

I'm sorry your going through this I know how scary and horrible it is.

Have you had any testing done like MRI or pelvic CT scan? That's how my drs found all of my fistula tracks.

I would ask for testing like this if you have not had it yet- it will give your surgeon a road map if you do have a fistula plus you will know for sure and knowing for sure will take some stress away.

No testing at all. My surgeon has never even mentioned it. Thank you for this, I think I should put a call in and see what the options are or perhaps get an idea what her plan is to identify and locate the fistula. Because I am concerned about going under again and her not being able to find it!!

Usually they can find the fistula while your under ga but not always.

I had two abscess and woke up with 5 setons!! My colon rectal surgeon had my scan results and also found my tracks while under. I have Crohn's disease and the fistula branched out

Long story short- I'm healing pretty nice now and feeling much better with all of the infection draining out.

You get used to the setons after a week or so you won't even notice them as much.. hopefully you do not have a fistula!! But if you do the seton is not a bad thing at all it's good to have it there so you do not abscess again. I hope this helps good luck keep us posted

I agree with Mel. CT and/or MRI were both used in my care over the last 2 years.

I have a great deal of confidence in the colo-rectal specialist; though I do have the benefit of being near world class medical center and doctors.

From my experience, the seton placement and surgery has not been an issue. The pain has been very manageable following both the placement and the removal of the seton. It's more inconvenient than it is painful (even when an abscess is full which is *extremely* painful).

My problem is that my body just doesn't seem to close up the abscess cavities entirely - even when the fistula appears to heal entirely. I am working with my doctor to do much more extensive imaging to find areas internally that are not healing as well as the exterior wounds appear to be.

Hi Chris

Do you have Crohn's disease?

I have the same troubles as you. I'm starting a biologic medication called remicade. Supposedly it's a wonder drug for healing these horrible things.

All of the side effects scare me but it's worth a try to get this under control. I start remicade the end of October. I told my dr and surgeon I need a vacation! Just need a break from surgery, drs, tests etc. I'm going to the beach for a week then I start the new medication a week later.

My drs actually agreed vacation is good!

Mel,

You've had an official diagnosis of Crohn's. Did that happen before or after the fistulas? If you are taking the biologic (I think that's the term) Crohn's meds, do they help prevent the fistulas? Or do they happen even on the meds?

I have had 8 setons at different times. Colo-rectal doc says it's Crohn's. GI says there's zero evidence anywhere else of Crohn's. I'm curious if the meds help stave off the abscesses and fistulas. If they don't help as much as I'd hope, they're not worth it given GI diagnosis. If they stop the fistulas and abscesses, they are likely worth it. I'm mentally exhausted and frustrated with the recurring issues and procedures. It's interfering with work and home life more than a little.

Thanks in advance.

I was diagnosed with Crohn's in 2001. Two years ago it started to attack my perianal area.(fistulizing Crohn's) as if Crohn's alone is not bad enough.

My Crohn's was always very mild I would only take prednisone for a bad flare which was the only med I was ever on besides flagyl and cipro.

If you search remicade for fistulizing Crohn's some very good information comes up plus reviews of others who are on it. I'm willing to give it a try.. it's an infusion you get every 6-8 weeks depending on your symptoms. I will let you know how I'm responding to remicade after my first few loading doses.

Mel,

I have not been diagnosed with Crohns.

Colo-rectal believes it is Crohn's based on empirical observation - basically, he's only seen the extent of fistula and abscesses I've had in Crohn's cases. There's no confirmation of that from blood tests or biopsies.

The GI does not want to treat it as Crohn's because what he's seen is a perfectly clean digestive tract upper and lower scopes and 8 biopsies were clean and clear.

The only meds I've taken in the last year are flagyl and mesalamine (Lialda). At one point I was on Cipro and Vancomycin via pic-line IV infusion. That lasted a month.

I'm waiting to hear results of latest CT and watching to see how docs interact re initial disagreement over diagnosis.

Colo-rectal specialist has said repeatedly that the abscesses and fistula are not life-style induced. He hasn't suggested nutritionist or different diet.

I've read conflicting information, e.g. more nuts is good and more nuts is bad.

Any references you'd recommend re diet? Or is Doc correct that diet doesn't affect much (since it doesn't appear to be affecting rest of digestive system; Crohn's limited for me if it is at all).

Chris,

Your Dr is right you did nothing to cause this. Diet does not cause it but it for sure can aggravate it and make it worse.

Bacteria and fungus love sugar and carbs. Try to eat as much protein as you can. Nuts are something I stay away from because in my case the fistula is like a filter and little pieces of nuts can get stuck and cause infection. I eat a lot of chicken, turkey and lean red meat. Fruits and veggies are good too. Nut butters are great but watch the sugar intake.

Things like applesauce unsweetened and cottage cheese are also good.

Manuka honey is an amazing thing.. it's exspensive but it does work.

I eat two tablespoons a day morning and night.. you can also apply it to wounds but I have not tried that.

It helps with digestion and is a natural antibiotic. Drinking lots of water has also helped me. Stay away from sugar filled drinks if you can and limit alcohol if you drink.

I know how horrible this condition is and it's hard to cope sometimes for sure because you just want your life back before all the abscess/fistula trouble started. I try to stay positive and have more good days then bad.

It does get better though.. time and patience.

I'm so very disappointed right now. I just don't know what to do.

CT scan showed yet another fistula. Abscess had drained, so it wasn't visible. But I know it's there.

That is what it is. The disappointing part is that the first available surgery is Fri October 7. I have a family member that I haven't seen in 2 years that is scheduled to arrive Thu night and stay til Monday. This is going to ruin the plans we had - or at least my part in those plans. I'm not prone to crying but.... I'm just devastated.

I'm so very sorry Chris.

Is there any way you can have the surgery after you visit with your family member? I know putting it off is not the best idea but if they can do it a week later maybe it will help with your depression? On the positive side at least they found it and you know what the next step is.

Try to stay positive and know you can beat this! Its hard I know but you will get through this one too!

I had undiagnosed abscess previously. Waiting doesn't seem to be an optimal decision health-wise. Plus, there's no guarantee that the abscess won't flare if I do wait and still interfere with plans.

So delaying surgery may not make the visit more functional and if could cause worse medical issue.

Volo-rectal is even more adamant about treating as Crohn's; sounds like GI is the one to make that decision and to treat though. Will be interesting since GI was opposed to starting biologica previously.

Crohn's can be tricky to diagnose

Unless your in a flare they may not see it if it's very mild. My scopes came up clean no Crohn's last November except for in the perianal and rectal area. When I was diagnosed it was in my large intestine and colon. The issue is you must have a Crohn's or ulcerative colitis diagnosis in order for them to prescribe remicade. They need proof.

I really hope they are able to figure this out quickly for you! Try to stay positive and know this can and will get better! Stress can make it worse I heard.

Cancer doctors are starting to realise that food is important when it comes to treatment. So why would it not be the same for a PA? The advice is aways to have a healthy diet. Some people can smoke and drink coffee and alcohol and not have a days illness but at the other extreme perhaps some of us need more of the healthy stuff than others. Stephen Hawking says he wonders if nutrition had a part to play in his illness. Hope you are better soon.

I have a healthy diet, don't smoke or drink and do lots of walking, running too. I know of people who smoke, drink and eat junk food and takeaways, don't exercise and yet I get perianal abscess. It isn't on.

Completely agree with you Tulip, it isn't on. I ran my first half marathon few months before I got mine and I sit for long hours at work too so maybe there is something in that. But I also think some of us need alot, lot more healthy food than others to keep our immune systems working. Thats what I did and it went away and didn't come back, everyone is different though.

Hi mel,

How did Manuka honey helped with your fistula condition? I had been taking umf15+ Manuka honey one teaspoon each morning for a month already after being advised by a friend. But has recently had a flared again.