Hello,

I'm new here and found the posts helpful. I've been dealing with a chronic fissure since February 2016, I noticed a bump (perianal cyst) in March of 2017 and I had a fistulotomy (I think) on May 23rd, I went in expecting a seton placement but it turns out I don't have an internal and external opening. I woke up with a gaping wound and a 10 inch drain (this thing goes to my knees). I'm assuming because of the drain, I don't need packing.

I've been managing the pain just fine, i haven't been taking my prescribed pain medication because I don't want to be constipated.

The pinching from the drain is constant! And despite the frequent sitz baths, hosing off and baby wipes, the area smells so musty it's unpleasant! Does anyone else experience this? I've never kept my butt so clean! I've looked at the open wound and it doesn't appear to be infected.

I'm feeling overall pretty discouraged, I'm still unable to sit, walking is unpleasant and besides the smell it's a constant bother.

How long does it take for most people to resume their lives? I feel like I'm at a complete stand still right now.

So, I don't anticipate anyone to respond to this post, but I want to follow up simply because I want someone who Googles "complex horseshoe anal fistula" to have something to read and that could possibly help them understand this nightmare.

I posted on May 29th, 2017; 4 days after my first surgery which at the time I had know idea what was going on and now have a little more insight. My first surgery consisted of treating the perianal abscess which didn't have an external opening but turns out (I found this out later) had a microscopic internal opening. This surgery entailed a 10 inch drain that leaked the most FOUL smelling fluids that I have ever smelled in my life and caused contact irritant dermatitis that made me want to rip my flesh off.

For some reason, and due to my CRS lack of explanation, I thought this would be my only surgery. I was wrong. A few weeks later and after an anal sonogram, the drain was removed and my CRS wanted to do surgery the next day as she was able to find the horseshoe fistula in my rectum with a VERY uncomfortable anal sonogram. Imagine being probed anally by a giant, lubed up, glowing alien finger. I'm not sure why she couldn't find this before, but I guess everything is one step at a time when you're dealing with an anal fistula.

On June 20, 2017, I have my second surgery, a seton placement. The seton is uncomfortable but I felt so much better without that nasty drain. Months go by and I try to resume my life as "normally" as possible until my next follow up appointment with my CRS. When people ask me I'm doing, I say I'm doing alright, but in reality I am always uncomfortable - whether it's the pulling from the seton or INSANE itching or just general soreness from the skin being very sensitive in that area now - my butt problems consume me.

On my follow-up appointment with my CRS, she is concerned that I feel pain in the area near my perianal abscess and orders another MRI. After a slightly traumatic MRI experience (turns out I'm claustrophobic!), guess who decided to invite themselves over to dinner? A small abscess with a tract leading to my horsehoe fistula! YAY!

On September 30th, I had my third (and certainly will not be my last surgery) where she placed another seton in the newly developed tract and left a gaping wound that needs packing half an inch away from my rectum. The pain has been tolerable and the BM's are ok, but there is no end in sight. My job has been helpful and allowing me to work remotely so I don't have to worry about sitting on my open wound for 40 hours a week. I haven't dealt with complications or infection but when I let myself think about it, in the sense of how it's completely affected my life, it makes me feel like I am being buried alive. My fistula is winning and holding me hostage.

My next appointment with my CRS is on November 20th, at that point it will have been 8 months since I first noticed the bump and 6 months since my first surgery. My CRS stated that she wanted to do a LIFT procedure since the fistula goes through both anal muscles (inner and external muscles), so I doubt it will be my last considering that the success rate is 60-80% but I suppose I have to just roll with the punches.

I write this in case someone feels like they're lost, I feel you, I read posts about people who have gone through this but I don't see the end and I know how it feels to be in the thick of it. Maybe when this is all over... whenever that may be, I'll have something more positive to say.

Until then... complex horseshoe anal fistula: 3 .... draingrrrl: 0

I'm so terribly, terribly sorry to hear what a nightmare you've already endured, and hope that there isn't too much more work to be done in your future. You are a very strong woman and I applaud your incredible courage.

chachacha wrote:I'm so terribly, terribly sorry to hear what a nightmare you've already endured, and hope that there isn't too much more work to be done in your future. You are a very strong woman and I applaud your incredible courage.

Thank you for the kind words, I'm trying my best to stay sane throughout this nightmare. I think about people who have illnesses and handicaps that completely control their lives - I know I'm lucky to have good health insurance and going to one of the best hospitals in the US and that I am able to live life outwardly normal. However, this condition is uncommon and very hard for people to understand how it's effects on your morale and how everyday things like sitting at a restaurant or riding a bike or even going out of town and needing supplies to make sure you're "comfortable" is like being a prisoner to your butt.

I always do the same (think of others in even more dire circumstances), but it's okay to feel sorry for yourself too. My late mother always told me that because you are always living in your own situation, and not that of others, it isn't quite as easy to do that as it seems. It's also therapeutic to have a good cry every now and then, but then one always has to pull up the bootstraps and get on with it.

Just keep your eye on the light at the end of the tunnel, and I'm sure that your surgeon and the great medical care you're lucky to have, will see you back enjoying your life once again soon.

So my living hell continues...

Last Thursday I went to see my CRS, she noticed some inflammation near my second seton and stated that this was the fistula growing upwards. Because of this, I need to have another fistula treatment surgery (my fourth) and I am not ready for the LIFT surgery.

Somehow, on Tuesday a perianal abscess ,which was not present in my last MRI (in September) decided to come out and play. From noon on Tuesday until about 7pm (when my CRS pleaded that I go to the ER) I went from feeling relatively normal to not even being able to walk. The abscess went from my perianal area into my labia and it was killing me. While I was waiting at the ER (thankfully only 30 minutes) that abscess decided to burst - wow... immediate relief!

Since this was Tuesday evening, my CRS was not at the hospital, so I saw the ER resident first, he takes a look at my setons and draining abscess and says "this is very complex, I don't want to touch this" and then pages the resident surgeon. Two visits from ER Doctors and the resident surgeon and they decide to admit me because blood tests came back showing I had an infection. I stayed in the hospital all night leaking nasty abscess fluids into a hospital pad and given five rounds of antibiotics to fight off the infection. My CRS tried to move up my surgery (which is next tuesday 11/21) to Wednesday but the OR was too busy. I stayed in the hospital all day waiting around, not being able to drink or eat to see if I could have my operation. Fortunately, the pain had subsided since the abscess was draining. Finally, after nearly 20 hours in the hospital, I was discharged by my CRS.

During my stay at the hospital, I had at least 10 doctors and 4 nurses come look at my butt. I never knew that I would get this much attention from medical staff for having a complex anal fistula but they are curious and want to see the freak show happening in my butt.

I was supposed to get a colonoscopy today to test for UC or Crohn's but my CRS didn't think that I should go through the bowel prep with my abscess.

I feel so completely defeated that I'm still dealing with fistula treatments. My CRS said that this next surgery will be more aggressive and will require a nurse to come and pack the wound daily. Fortunately, my job is helpful and allows me to work from home but I feel like this will never be over. I feel like I'm undercover in society, because I seem physically healthy but I'm dealing with this chronic and debilitating issue that is controlling everything in my life. I know it could be worse, but it's affecting everything in my life - my relationship, my friendships, my social life, my ability to work out...

I hope that this fourth fistula surgery is my last and then I can get LIFT and look at this past year in the rearview mirror but right now I'm still in the thick of it.

Oh my goodness....that is an awful lot to have to go through. I know what it’s like to have a health condition that impacts on every part of your life. I lost over 7 stone with my fissure and everyone kept saying how well I looked...quite frankly I often wanted to scream at them that losing the weight was not worth the absolute agony and soul destroying impact it was having on my life.
It’s never pleasant to have loads of doctors to to see you just to look at your butt....they seem so interested and sometimes even a tad excited that they have something complex to discuss.
I’m sure you will be out of this nightmare soon and that next year will be a new start and this pain will be just a memory. Really good luck with your op and your one step closer to being back to the old you.

So it's been three weeks since my hospital debacle and two weeks since my last surgery and this is no walk in the park! My CRS performed a fistulotomy and treated the perianal abscess (let's hope another one doesn't come back...), I left the hospital in a daze, seeing my doctor for about a minute in which she told me that the wound was "superficial" and that I could easily pack it at home... HA!

Let me tell you about this wound, it's the size of a small child's fist and it sits vertically up my left butt cheek. This is close to the area I had closed pilonidal surgery 8 years ago (surprise surprise, I've been collected butt cysts like pokemon cards). The wound shocked my partner at first (quite frankly, I haven't had the heart to look at it) he said that it looked as deep as a shot glass and that he couldn't determine where the bottom was. Now here I am thinking that it was going to be "superficial". Nothing could have prepared me for the pain of changing the gauze and having it packed to what felt like endless depths with a new gauze, twice a day, like a morning wake up call and a night cap from hell.

At first the pain was intolerable, I was taking my tramadol every four hours but then I started to get sick and was unable to function normally, so I switched to tylenol. I couldn't sleep, the wound is so far up my butt that I can't lay comfortably on my back and laying on my sides causes pressure on the wound. After a week I started noticing improvements, the wound wasn't as deep or as "gaping" and I was able to start sleeping, albeit not great, but at least stringing a few hours consecutively. At this point, the wound doesn't require deep packing and the edges are starting to come together. It's still pretty bloody and weepy but I assume that will be the case for a few months.

On Sunday of this week, I noticed that my butt was tender and it has been getting worse since then. It feels different than abscess pain, it's like a deep muscular nerve pain in my butt. I've read that muscle spasms are possible and considering the size of the wound, I assume that they cut through quite a bit of muscle, but this pain is uncontrollable. I've noticed that stretching helps subside the pain temporarily but it always comes back. I'm seeing my CRS tomorrow for a follow-up and part of me has been scared to let her know about this pain because I don't want to have to spend another needless night in the hospital. Has anyone else experienced muscle spasms with their fistulotomy? I know there are signs of infection like swelling, pus, odor, fever and nausea - I don't have these symptoms. But the deep muscle-like pain is worrying me.

Hello all,

Yesterday I had my 5th fistula treatment surgery and there is still no end in sight. I've had so many holes made in my butt that I've lost count and at this point, the left side of my butt probably looks like Deadpool's face. In December, I saw a GI and had a colonoscopy done which tested negative for Crohn's. Yesterday, my CRS decided that because the inflammation of my fistula won't go down, she wants me to see another GI to do some blood tests because my case is beyond the point of "this is normal". I feel very devastated and defeated that I can't beat this thing, how many more surgeries will I need? The upside is that now instead of three setons, I now only have two (yay...)

My latest MRI showed no new collections or "air pockets" but did show an area where a new fistula was growing to the right from one of the fistula with a seton. My CRS opened up the area and "corrugated" or "excised" (I can't remember what she said) the fistula tracts. Now, here I am again, recovering from yet ANOTHER fistula treatment, still unsure as to when this will all be over. It's almost been a year at this point and I just want to have my life back.

For the past few months, I've maintained a blog about my experiences - I figured I'd share the link here to anyone who is curious.

https://thebuttstuff.blogspot.com/

Thank you for the link to your blog (I'll read it later). I can't imagine how hard it would be to be in your shoes right now, because your medical community hasn't been able to help you yet. Have you tried googling using Google Scholar? They have a lot of medical studies and other quite technical information available and maybe you can suss out something that will give you more information than your doctor can provide. It may be a long-shot, but probably worth it, because "you never know".