Anal Fistula's

[Carrie171087]

I'm sorry if there has been a thread regarding this, I've had a quick look through and couldn't see anything recent.

I have 3 anal fistulas I've had them for almost 2 years now, they constantly leak pus, faeces and pass gas through them and get very sore. I was diagnosed with Crohns disease in June 2012 but had symptoms and had my first of 3 anal abscesses from 2007. I was given asacol 800mg to take 3 times a day October 2012, but was wondering if anyone has any advice, if anyone has had the same problem or is suffering the same problem. Ive read a lot regarding getting rid of the leaking fistula's but obviously with having Crohns (which always seems to be flaring) it can make it worse and there's a high chance they will return. I'm 26 years old and im running out of faith and idea's i don't want to have to walk round wearing large knickers and pads for the rest of my life, im so embarrassed.


:heart: :sign0085::heart:

 

[Grumbletum]

Hi Carrie and a warm welcome to the forum. Glad you found us but so sorry to hear about the issues you are having. There have been quite a few threads discussing anal fistulas. Did you look in the Wiki? Some of the entries for fistulas have a list of threads at the end of the entry discussing that subject.
I am also tagging Sailorluna. I haven't had that particular type of fistula, but she has and may be able to help ( though I know she is having some issues herself at the moment :-( )

 

[Carrie171087]

Hi yes i originally posted in treatment, once my thread had been moved i noticed all the other threads regarding the same kind of thing. i will check out wiki. Im being referred back to my gastroenterologist in the next few months so hopefully will get some answers from them. From what the doctor said this morning it needs addressing and it should not have been left untreated for this long. I just hope its not to late to sort out as i have read fistulas can and will get worse especially with Crohn's suffers. I keep my fingers crossed for the future and will keep everyone updated..

:-D.xx

 

[Grumbletum]

Is Asacol the only med you've been on? Perhaps you're needing something a bit stronger if these fistulas are not healing up. I know a few people on the forum have had success with Infliximab. I was on it briefly and felt great, but my fistula was internal and they are hard to heal with meds.

 

[Carrie171087]

Thanks i will certainly mention it and see, it can't be any worse than how i am now.. 2nd day of antibiotics and the abscess is growing, i just hope it doesn't need draining again.

 

[lgpcarter]

I feel like I should buy shares in the Always company - I use that many pads and pantiliners. 24/7 coverage required here!

There are things that can help. I just had two setons put in my fistulas. The are sort of like rubber bands that keep the tract open and let it heal from inside out. At least in theory. I'm starting to think mine will never heal. They definitely keep them design so new abscesses won't form,

Some drugs will help. Remicade is by far the best at closing fistulas, but Humira has also helped for some. I did a couple of years of antibiotics (Cipro and Flagyl) and that really helped my perianal disease. I still do short courses on occasion.

Check out some of my recent posts and Sailorluna's too - lots of info here.

 

[Sailorluna]

Hi everyone,
Sorry I am late to the party.
Carrie, welcome to the forum. It sounds like you do not have setons is that correct? I am with Grumble if you have recurring abscesses you should absolutely have setons put in. They will stop the fistula from healing shut but prevent the puss and such from pooling up and re-infecting making another abscess. At least along that fistula track.

For discomfort I use calmoseptine cream, but any barrier cream should help. I also use alot of heat, hot baths or heating pads. In addition to the panty liner I use a makeup pad (although anything soft and absorbent would work) between my cheeks to stop the leakage (hopefully) from even getting to the panty liner.

When I only use a pantyliner the leakage destroys my skin. Not sure if it is acidic or just the moisture...

For me though the worst is when I have the big D as we say around here. When you have liquid stool it is so much easier for it to go through the fistula and as you know that is painful indeed.

Are you having a lot of diarrhea? If so the best first step you can take is getting that under control - I know that can be a difficult task. I take Welchol and Lomotil both specifically to combat that. In addition I have to avoid grease and the various other things my tummy hates. Everyone is unique so experimentation is key.

 

[Carrie171087]

UPDATE. I have just got out of hospital after having surgery. I have now got 3 setons in place. I am off work for a few weeks and hope that i soon get used to the cleaning as its a nightmere. Thanks for the advance about the different types of medication i can take to help heal them. Im waiting to go back in 6 weeks for a check up so will certainly ask about starting on something. I believe im heading in the right direction and hopefully in a few months they may heal.

 

[Grumbletum]

Yikes, 3 setons, poor you. I hope they give some relief. Rest up and take it easy for a while. You've been through a lot.

 

[lgpcarter]

I found baths and a peri bottle the only way to clean up for about a week after I had my setons put in. Sometimes I used the sitz bath insert for the toilet and sometimes got in the tub. They soothed as well as cleaned.

 

[timbo267]

Hey I am just the same.. Abscess and fistulas taking over!
Every time it think oh it all seems ok back they come it's a viscous circle.
I am currently in pain with one off work again! I feel your pain I've had the surgery aswell. The things that help me are lots of rest hot salty baths, if you have an abscess it will draw out the puss quicker it's the only way to get rid of them . And strong painkillers help when it's really bad. Hope you feel better soon.

 

[Helagatana]

HI,
Can only imagine what your going thru....Ive had mine for 5 months, lost my job and just underwent 2nd surgery a month ago. Have you done some research on Lift Surgery?...I just had mine and according to my very expensive professor doctor..its all good now...but my wound is sure taking it own sweet time to heal...if im ever off my antibioticss...it keeps getting infected...but there seem to be improvement. *fingersCrossed*

there are plenty of treatments out there...but what ive learnt is to get yourself out of a public hospital if your in one...get the best doctor you can find that specialize in colon/anal fistula...there aernt that many out there..or at least a 2nd opinion....i nearly went for a different operation and have a seton placed and Thank my mom for helping her 30 year old son find a damn good "confident" doctor...but he has sure hell put back some hope in me to carry on with my life....

I wish you all the best...God willing all will be ok....take care