My (horror) story...

You know, most of us have had health scares or seen “horror stories” online. At least, I have.  You see these scary stories of people going through horrible periods of their lives – health crises etc – and until you go through something awful, those stories seem like just that. Stories. It’s not until something happens to you. Something awful. That you realize that those aren’t “horror stories” at all, but people’s lives. People who have loved ones, lives to live and who are suffering. These aren’t nebulous stories out there on the internet all by themselves at all. These are the stories of people’s lives.

Unfortunately, the story of my rectal abscess and fistula would qualify as one such “horror story”. Only, of course, since it happened to me it isn’t just a ‘story’ at all. It’s my life.

I’ll never, for as long as I live, forget the day this nightmare started. It was November 10th 2016. I came to work and had a bit of trouble sitting. My labia on my right side was a little swollen and tender. I finished the work day and didn’t  think too much of it. The next day was Remembrance day and I had that day off (thankfully) and by then, I wasn’t able to sit properly at all and the pain had me completely bed ridden and had a massive fever and chills. Things progressed that fast. I couldn’t understand what was going on. Just a few days ago I was fine, and now I couldn’t get out of bed? It made no sense.

Here is where I made my first mistake. I was in too much pain to wait for my family doctor to be able to see me (this was on a Saturday and my family doctor isn’t open on weekends), so I went to a walk in clinic doctor. A doctor who is notorious for not giving proper medical care. I told him what had happened and he didn’t bother properly examining me. He wrote a prescription for generic antibiotics and sent me on my way.

I’ve since learned that I have irritable bowel syndrome. Any time I’m stressed out or anxious, my colon lets me know about it. All of this stress and all of the pain hormones being released in my body wreaked havoc on my digestive system and the antibiotics that doctor gave me only made things even worse. I wasn’t eating. The antibiotics gave me horrific diarrhea and within three days, I passed out while trying to make myself some toast. After about an hour I was able to pick myself up off the floor and make my way to bed, which is where I stayed for another few days.

A few days after the passing out incident, severe pain woke me up at 4 am. I was shaking and unable to control my arms and legs well. I couldn’t stand without hanging onto something. I woke my husband and we went to the ER. The nurses took one look at me when I got in the door and got me a wheel chair. They my blood pressure and admitted me within 2 minutes. I knew then that something was horribly wrong. Sure I had been bedridden for a week, but when you visit the ER and they move that fast? Not good. Not good at all. They hooked me up to an IV so I could receive fluids the dehydration and the next day they sent me to see a gynecologist. I was given pills and sent home.
Thankfully a few days later, I got in to see my family doctor who gave me powerful painkillers that took away the pain. I could sleep for the first time in a week. Because of my diarrhea issues, my doctor had me give a stool sample to test for C. Diff (urgh. Giving a stool sample is NOT fun!), which came back negative.

After taking the pills the gynecologist had given me for about a week, I went back for a follow up where he saw that I hadn’t gotten any better. I was booked to have Bartholin surgery and the next day went through with that. Here’s where I had my first bad surgery – I wound up not having a Bartholin infection. I understand that doctors are human and make mistakes, but the gynecologist I saw should have seen a release of pus when he cut into me if I’d had Bartholin. He didn’t. Instead of contacting another doctor or giving me a scan, he went through with the surgery, stitched me up and sent me home.

Recovering from Bartholin surgery was incredibly painful. I’d already been doing sitz baths and taking very hot baths at this point because I’d researched my symptoms and also thought I had a Bartholin gland infection and one recommendation was sitz baths to try to bring the infection to a head.  After Bartholin surgery, the recommendation was to continue taking sitz baths (unfortunately I put Epsom salt in my first bath after surgery – never again! Salt in an open wound is pain incarnate) .
All of the antibiotics and pills I’d been given by doctors made me develop black harry tongue so that was another issue to add onto the pile (at this point I’d been bed ridden for weeks, had black hairy tongue, a broken finger, and diarrhea from extreme stress and antibiotics).

A week after Bartholin surgery, my labia started swelling even more! It was horrifically tender, just lightly touching it was agony.  A few days later, extreme pain woke up me up at 6 am. I woke up crying and begging my husband for pain killers. I saw my gynecologist the next day who referred me for a scan at the hospital to try to figure out where the collection of pus was. The next day my gyno admitted me into the hospital so I could to the operating room to be put to sleep so he could have a thorough look at what was going on. I’ll be eternally grateful for this doctor (even if he DID make a big mistake by giving me surgery I didn’t need) for finally having me admitted to the hospital and actually examining me. No other doctor had done that, and by then I’d seen at least 5 doctors.

I woke up after having been out for 3 hours. Surprise! I now had a new doctor that I’d see. The gyno discovered I didn’t have a Bartholin infection at all, I had a rectal abscess. The new doctor explained that the abscess was so bad, he just went to examine it and it burst. He said the hole was the size of his finger and he put his finger right through it which he’d never, ever done in his career. By this time, I’d been struggling for 5 weeks and since the nature of an abscess is for the infection to continue brewing and swelling, this made sense to me. He’d drained the abscess through my rectum which, I was told, was the best case scenario.

Words can’t express how relieved and elated I was after they had finally (!) found out what the problem was. It was over! I was scheduled for a follow up with this surgeon a few weeks after the drainage to see how things went and, since at that point I had no clue what a fistula or an abscess was, I wasn’t worried at all. I practically floated out of the hospital.  I was given directions to take sitz baths as hot as I could stand to help relax the sphincter muscle and help with pus drainage. I’d gladly do that if it meant making sure the abscess never came back. I was free!

My relief was short lived. Usually what happens when a surgery is performed there is some swelling initially but that goes away. I noticed that after having a BM my labia would swell. Within 5 days after surgery, my labia was back to being tender and swollen. It’d go, BM, swelling, super hot sitz bath, swelling would go down.  I didn’t know what to expect so, thinking ‘well at least it’s not as bad as it was before’ I happily returned to work. It was a struggle trying to sit but the pain wasn’t  nearly as bad as when I was bed ridden so I thought I was finally on the right track.

I’d gone back and forth between my GP, surgeon and the ER, complaining about swelling and pain but no one really seemed to take me seriously. Finally, after being put off for about a month, I got in to see the surgeon. By then, my labia had swelled back up and was 3 times the size it should’ve been. It was hard and my lymph node in my groin had swollen up so much it was too painful to even lay a blanket over it. The surgeon took one look at me and booked me in for surgery the next day. I was to undergo another incision and drainage procedure only this time, the doctor was going to have to burn a hole into my body externally to drain the pus.

I wasn’t worried, the first I and D didn’t hurt, I didn’t have any notion that this would be as painful as it wound up being. After undergoing surgery, I was shocked to see the size of the wound. The doctor had made a hole in my body between my vagina and anus that was as wide around as his finger. I could see straight through my body and into my rectum. The doctor didn’t warn me how painful bowel movements would be. I sobbed and howled on the bathroom when I had to have a BM for a full week. The pain was indescribable as full sized stools (just smaller than if they’d come out of my anus) ripped through my open wound day after day.

That surgeon had warned me initially that we could only hope the wound healed by itself but that it could become a chronic wound. Looking back, I don’t think there was any way it was going to heal properly and not become a fistula. There was too much moisture and pressure for the wound to heal properly. Also, fully formed stools ripping through an open wound didn’t seem good for it.

I also wasn’t warned that the pus itself wouldn’t be the standard yellowish cream colour I’m used to seeing but brown (I thought it was poop at first) and smell sulfuric. Nor was I warned that I could develop diaper rash from always having a wet bum and I should get a barrier cream to help keep my skin irritation down. My wound flooded pus for about a week and a half. There was so much that I needed to wear a pad and an absorbent abdominal pad (for the back of my underwear) every day. Initially I’d switch these out 3 times a day and take sitz baths 3 times a day and after each BM and still it wasn’t enough to keep ok top of the pus drainage.

All the while my surgeon gave me very odd advice. He told me that abscesses grow to whatever size they are going to grow to and that the fact that my diagnosis took 5 weeks didn’t matter. He told me that you can have a wound covered in poop and that won’t affect the healing process. He also gave me the aftercare instructions to sit in a sitz bath filled with warm water and that’s it (I totally disagree. You should disinfect the water first by boiling it and make sure to put in Epsom salts and disinfectant essential oils to help the infection drain).

The wound slowly got smaller and smaller. Each week was a challenge figuring out how to get as much poop out of my wound as I could. I’ll never forget the point where my wound got so small at the external site that poop (formed poop was still trying to come through) would get trapped up there. Sometimes it’d be trapped in my body for as much as 5 hours at a time. I’d push and push on the area trying to dislodge it. I remember calling that surgeon’s office worried about this and the secretary promised me she’d pass my concern along to the surgeon. Unfortunately for me, he had a vacation coming up and he certainly wasn’t going to bother getting back to me when that was on the horizon. I was on my own. I was only sitting in warm tap water (as instructed) at that point. The infection brewed and brewed. I was in a lot of pain and absolutely miserable.

At the 5 week mark, I went for another follow up appointment. The doctor saw my wound and was horrified. He started going on and on about how he suspected Crohn’s disease because I’d developed a fistula (Um...it would’ve been a miracle if I hadn’t!) and because of the state of my wound (which was infected. Of course, he wasn’t going to admit that he’d messed up in any way).

He diagnosed me with a fistula and booked me in for surgery to have a drainage seton put in. I was absolutely beside myself with grief and fear leading up to my seton surgery. I had heard countless horror stories about fistulas and setons. I cried from the moment he diagnosed me and didn’t stop until the seton was installed. I was terrified of having any more procedures and convinced having the seton put in would make BM’s as painful as they had been after my second I and D procedure.  Thankfully, it didn’t. The seton turned out to be the best thing that happened to me through all of this, even though it was horrifically irritating to my anus.  Without my fistula trying to close up from the outside first, pus and poop didn’t have an opportunity to get trapped up in there and start brewing infection. Finally. FINALLY the wound began to heal properly.

But my story doesn’t end there. That surgeon knew from the moment he diagnosed me with a fistula that he didn’t have the skills needed to fix it. He was a general surgeon, not a colorectal surgeon and had only seen an abscess in the position mine had been twice in his career. Still, he sat on my case for another 3 weeks to a month before he referred me off to a colorectal surgeon. After the referral was put through it took another 6 weeks to even get in to see him. Meanwhile he gave me a colonoscopy to check for Crohn’s and took a gazillion biopsies of my colon.

By this time, I was an absolute mess. I was suicidal. I wasn’t sleeping or eating and could barely think. And weaving throughout this entire story was the story of my broken finger which I’d broken about a two weeks before the abscess reared its ugly head. There were multiple appointments to a finger specialist to monitor the healing progress which were absolutely brutal because it was a 3 hour round trip to see him. Yeah. Three hours sitting in a car on an abscess and then a severely infected fistula. Good times.

Still, this new surgeon was supposed to be a ‘fistula expert’ – that’s what my old surgeon told me. Surely he’d know what to do, right? By the time I finally got to see the new surgeon, I’d been convinced by my old surgeon that I had Crohn’s disease. Imagine my surprise when he told me he didn’t think so. You could’ve knocked me over with a feather. The new guy then asked if I’d been sent for an MRI to see if the fistula had fistulized or if I’d been sent for a CT enterography. I told him I hadn’t.  He looked confused, performed a rigid sigmoidoscopy on me and then sent me off to have those tests done.

It took another 6 weeks to have the CT enterography and 2 weeks after that to have an MRI – and according to everyone I talked to, that was quick as far as Canadian medical wait times are concerned. After those tests, I had to wait another 2 weeks or so to go back to the colorectal surgeon.
By now, as I’m sure you can imagine, I’d become pretty fed up. What the absolute fuck were these surgeons doing? Did anyone know what the fuck they were talking about? I’d learned the hard way that you have to be your own best medical advocate. You have to be an absolute bulldog about your health. No one. Absolutely no one, and certainly not a doctor who only sees you a time or two a year, will care more about your health or recovery than you will. I’d made changes in my overall life style.

My first surgeon told me I had no dietary restrictions even though he thought I had Crohn’s (really?? Cause I’m pretty sure if you eat McDonald’s every day you should stop that if you have an inflammatory bowel disease). I didn’t listen to him. I changed my diet and cut out a ton of processed foods and sugar. By then I’d spoken with my aunt who works in the health field and was making sure to only use sterile water in my sitz baths and to use essential oils and Epsom salt. I made sure to drink 3 cups of Chaga tea a day to help with my overall health.

So by the time the 2nd appointment with the CRS rolled around, I had no faith in Canadian doctors. I knew what my surgical options would likely be – LIFT, Advance Flap or leave my seton in forever. And I was right. That surgeon had zero empathy and was horrifically caviler as he told me my options. LIFT had a 60% success rate. That’s the surgery he recommended. Flap had a 70% success rate. He was pleased that my test results didn’t find any sign of Crohn’s  and that my fistula hadn’t fistulized. I on the other hand was far, far less than pleased. I’d waited for about 6 months. Months of sleepless nights. Six months of no eating, crying myself to sleep, crying myself awake. Months of worrying about what the rest of my life was going to look like. Months of worrying about losing my home and being homeless because I had missed so much time from work that if I took any more time off it’d be unpaid. All that just to hear this news? News I had already educated myself about so he didn’t even have any new information to share with me?

I was sick with fury. I’d already joined two facebook forums for people who suffer from abscesses and fistulas. I’d heard so many terrifying and sad stories from people who had undergone those surgeries and they not only failed, but made things worse. It seemed like anyone who had success with those surgeries only had that success if they’d undergone those surgeries multiple times. I knew I didn’t want to go down that route. I’d had two botched surgeries and three misdiagnoses. I didn’t want a Canadian surgeon to slice into my asshole ever again for as long as I lived.

I asked that CRS a few questions and was wholly unimpressed with is lack of knowledge. I came away feeling like I knew more about fistulas than he did. I know it’s in my nature to obsessively research things – as a librarian I take an obscene amount of joy in research and learning. I know that’s not the norm. Still, HE was the specialist, not me. I was also severely unimpressed when I asked for wound vac and he told me they weren’t going to bother since my wound was so small (!!!!!!!!!!!). On top of that? He’d never heard of a comfort seton and basically told me if I wanted to leave my seton in forever, I’d have to live with the conventional seton I had in that has ties and is irritating and scratchy as HELL on the delicate anal area. No. Thank. You.

I knew before I went to my second appointment that I was strongly considering going to India to have Kshar Sutra. That was a procedure to cure fistulas that I kept coming across but the idea of going to India and having to stay for weeks was daunting. Still, by the time this appointment came I knew three things.

1) I didn’t want to live the rest of my life like this. I’m only in my thirties and, theoretically, still have a lot of life left to live.

2) Kshar Sutra was the only procedure that made sense to me. The doctor would see me once a week and change the thread. The thread was medicated. In Canada, the surgeries that they want to do are typically day surgeries where they try their best, then send you home. It’s like – good luck! Have fun shitting on your wound every day. Hope this works. If not? No worries, we can always give you more surgery.

3) I knew I didn’t want another Canadian doctor touching my asshole ever, EVER again.
With that appointment over, I was 100% certain that I wanted to try Kshar Sutra. And that’s where I am now, waiting for the day to arrive when I can hop the plane to India to have this procedure done.

From the time this nightmare started until now (September 2017), 10 months have passed ( and I STILL have the gosh darned fistula >_< )

For info on Kshar Sutra, I highly recommend you watch this video.

PLEASE NOTE: everything stated in this blog is my personal opinion. I am not a medical professional. Kshar Sutra treatment is not approved in Canada or the USA. People choosing to travel to India to undergo Kshar Sutra treatment do so at their own risk.