Fistula nightmare

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ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 44
   Posted 8/6/2017 2:09 AM (GMT -7)   
Hey guys so it's my first time on here actually writing something. I think i have read every single forum regarding fistulas and decided i would post my story and see if anyone could offer any information.

So my story started back in March 2017 where I had been suffering with sciatica for a couple of months. I developed a new pain that was deeper than the pain i had from sciatica previously. I went to the ER as i could nearly move because the pain was so bad and i was diagnosed with a herniated disc. I left the hospital feeling rather hopeless and that this was something more but who am I to argue with a radiologist and a doctor.
5 days later i lay in bed and fell asleep for around 20 minutes, woke up because the pain was so excruciating and asked my wife to take me back to the hospital because i felt like something was seriously wrong.
I was admitted to the hospital almost immediately and told i had an abscess! It was huge by this point and had started to develop black spots on my butt cheek. I then got septicemia and was taken in for surgery the next afternoon.
They drained the abscess and left me with a huge open wound and the surgeon told me i had a fistula but he wasn't willing to do anything with it as it wasn't what he specialised in.

So after 10 days on hospital the next part of this horrible journey started. I found what is believed to be the best colorectal surgeon in Arizona and had a draining seton put in. Some days were really painful other days were painful but bearable. I had that for 8 weeks and then my surgeon did the plug surgery. Again some days I have wanted to die because the pain is so bad but other days have been manageable.
So here is my questions.

Has anyone had this surgery and it's been successful? I'll be honest all i seem to find is stories where it hasn't worked and i need to hear some positive things about this. I had the surgery for the plug 6 weeks ago almost, the draining has decreased and i have passed 2 stitches through the fistula (that wasn't funny)
What are things to look for that suggest it is successful and what are the signs it has failed?

I'm dreading being told i need to have another surgery as the next one he will try is going to be the flap. This has taken its toll on me mentally, physically and emotionally. I wouldn't wish this on my worst enemy.

Please offer me advice and postive things would be great. I have a lot of things going on right now so good news would be like music to my ears

TIA

Zoe smile

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3321
   Posted 8/6/2017 1:36 PM (GMT -7)   
Welcome to the forum! I have a few questions:

Have you been diagnosed with Crohn's? If so, then what meds are you on? If not, have you been referred to a GI at all? You need to figure that all out before doing another surgery. If you do have Crohn's, then a biologic like Remicade *should* help. If you don't have Crohn's, then you need to see a GI and get a colonoscopy to check anyway, whether or not this awesome CR surgeon thinks you do.

Did your CR surgeon explain to you that a seton can be left in indefinitely? Like, until the end of your life? The flap surgery doesn't have the highest success rate, and if it doesn't work, then you risk getting an ostomy to allow it to heal. If the plug doesn't work, it just falls out and nothing changes. Getting the flap with a graft is much different. Personally, I'd opt for the permanent seton. (In fact, that's what I did, on advice of pretty much every CR surgeon I've had.)

My follow up after my plug surgery (which failed) was 6 weeks after the fact, and it didn't heal at all. I would imagine by this point you should have a pretty good indication that it's all healed, or at least mostly healed. When is your next appt with the CR surgeon?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 44
   Posted 8/6/2017 2:42 PM (GMT -7)   
Thank you for your response.

I realised after i posted that i hadn't explained my history. I do not have CD but have not had a colonoscopy to be sure. I have read about others having a seton in permanently but i really don't want that. I hated the seton being in and having a draining open wound. I'm paranoid all the time and because of where my wound is i struggle to stop the draining going on clothing. I had quite a few days of pain when I had the seton and it was never plain sailing.

It doesnt seem like there is any straight answers when it comes to fistula s as what one has is different to the next. I get pain after every bowel movement without fail although the pain has decreased significantly so the way i see it right now is if i have a seton and have constant draining i may as well have the fistuloctomy and be incontinent at least that way i dont have pain.

I really don't have a clue when it comes to any of this and im sorry if it sounds as though I am being ignorant.
If you have a constant draining wound, are you constantly taking Colace, Can you ever go swimming? How do you wear normal underwear with draining? Is it painful BM forever? What about when thay seton moves and the knot of the seton goes into your wound? I found that part extremely painful. My life is on hold until this is sorted.

My CRS has upped the amount of time I wait to see him for 2 weeks to 3 weeks and now to 4 since the surgery.

I also had pain on the other side opposite my wound which my surgeon believed was draining to the other side. This has now gone away 5 weeks later. I get days where im really hopeful and then it changes again.

I dont know what to do and again im sorry if I sound like im being ignorant.

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 8/6/2017 3:37 PM (GMT -7)   
I agree with everything @scifigal has said. You definitely need to see a GI because crohns vs no crohns makes a big difference and you really shouldn't go through another surgery without knowing. I don't have experience with setons (I was told I was not a candidate for surgery by the GI I saw at the time) however I did deal with fistulas for around 3 years. I am familiar with the emotional ups and downs of dealing with them. for the constant drainage I would recommend gauze ( though I often resorted to paper towels because of the absorption but I wouldn't say that is a great idea for everyone especially in the beginning when everything is very painful ) also, thin pads to line your cloths will help protect anything from going through. Again with out experience with setons I can't say for sure but with the fistulas I had the main pain with BMs were in the beginning and when they were getting worse at times. If you add a little prune juice to your diet you may find that that helps.

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 77
   Posted 9/5/2017 7:17 AM (GMT -7)   
Hi Zoe, how are you?sending my support. Dimitri

ZoeUK1989
Regular Member


Date Joined Aug 2017
Total Posts : 44
   Posted 9/5/2017 9:41 AM (GMT -7)   
Hey Dimitri, Some days are okay and others and still bad. I have been told i need another surgery in October because the plug has failed. Sad news but something I was expecting i guess
How are You?

dbrookenz
Regular Member


Date Joined Feb 2017
Total Posts : 32
   Posted 9/5/2017 7:00 PM (GMT -7)   
Hi Zoe,

I've had the flap procedure so I'll tell you a bit about my case and some conclusions I've reached as we seem to be in similar boats. In Feb of this year I got an abscess in the perianal region. I didn't have a clue what it was so just assumed my body would fix it eventually, except it didn't and the pain became worse and worse. Finally I went to the ER and they did an I&D and sent me home to recover. Great, it's over I thought to myself. However upon reading stuff to assist recovery online I kept seeing the term 'fistula' pop up everywhere. I hoped and hoped I wouldn't have one but alas the wound never healed. More to the point, it healed over the outside mostly but kept a big pocked beneath. I finally got a specialist appointment and he performed a EUA. I thought I was going to come out having had a fistulotomy but instead I came out with a seton. He told me he found a fistula but it was too high to lay open. He said he would see me again in 6 weeks regarding options. However I found the seton to be almost unbearable especially in the hours following a bowel movement. Eventually it fell out after 3 weeks (I guess my body was so angry with it being there it kind of expelled it!) and I emailed and called up my specialist begging him for an assessment.

4 weeks ago he performed an Advancement Flap, using a musocal flap. It was pretty uncomfortable for the first few days. Not really sore per say but I found my ability to hold things in was slightly compromised. I don't want to overstate it though. I could do it, it just didn't feel as strong as before. That's normal though, he did cut into the lining of my rectum after all, and put in some dissolving stitches, and I imagine that area takes a LONG time to heal properly. He also performed a partial lay open, just kind of cored out my original wound again so it would drain and heal from the inside out.

4 weeks down the line, I DO feel better. I have discomfort a few hours after a bowel movement but its manageable. The drainage from my wound was heavy to start with, then became minimal for a week or so. Yesterday it drained a lot again but the nurses measured it at 2.3cm (it was 4.5cm to begin with) today so even though it still needs packing every day or two at least it's actually healing from the inside out. I'm cautiously optimistic at this point. I do get a strange cramp in my anus sometimes during the day, if I've moved about a lot. It lasts for about five minutes and feels horrible. I've tried to look up what it is - rectal spasm or hemmeroids or something else - but no definitive answer. I didn't get the cramp prior to surgery. It's irregular enough for me to not worry too much, hoping it will go away as my body keeps healing.

I know how awful a fistula can be. My advice for you is to do everything possible to avoid damaging sphincter muscles. Once you damage that, and become incontinent, there's no going back. Ever. In the research I've read on the flap operation it has about a 70% success rate in non chrons, about 40% in chrons patients. I also read that many people who have a flap failure the first tie can have another one and it's often a success. In my reading I read that the plug has one of the lowest success rates of all procedures. It puzzles me why your surgeon took this option - there's a million studies that suggest it's not great - but perhaps he had a reason that we don't know.

Don't be scared of the Flap if that's what he wants to perform next. It sounds worse than it is. The first few weeks are rough but manageable and it improves slowly after that point. There's also the LIFT procedure, that seems to have good success rates, so bring that up with your specialist when you see him next.

Good luck!

Dimitri71
Regular Member


Date Joined Jul 2017
Total Posts : 77
   Posted 9/6/2017 3:19 AM (GMT -7)   
Zoe, I totally agree with DBrookenz "My advice for you is to do everything possible to avoid damaging sphincter muscles". Seton's maybe horrible indeed (some people don't mind them so much) but a necessary means to an end in order for the fistula to drain and define a track.
It is a long process but most people win in the end and do indeed get rid of fistulas.
Keep your spirits up and be patient! You have a whole life ahead of you after this and during this!
I have a seton in site and waiting for a potential FiLac Surgery (Laser) in October.
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