Fifty Shades of Sterile Packing

Some of you may have noticed my blogging absence recently.

I wish I could tell you that I have been off traveling again…. but that would be a lie. 

I wish I could tell you that I was just so busy living life and doing things…. but that would be a lie.

I have actually been trying to figure out if I should really blog on this topic right now- or leave it for another day but while I am going through it, I guess I should capture it a bit. As most of you know, I advocate quite a bit for mental health awareness. I like to capture my pain in the moment so I can help bring awareness, so I am going to do that now for a completely different health problem. One that is actually quite common, but definitely not talked about or even something a lot of people will want to admit to.

Curious?

Meh- You may not want to be.

I also just want to add that I am not telling my story for pity, sympathy and attention (Though some prayer would be appreciated if you are so inclined) so let’s just get that ridiculousness out of the way now.

Here we go:

I have spent the past week in tremendous pain. Pain so excruciating that I actually end up needing to stay in bed because it gets to the point that I cannot walk, sit or stand (laying down too) without being in complete agony. Some painkillers don’t even work, others just slightly mask it. Fevers take over my body, my ability to use that washroom for that relieving number two was gone and it wasn’t because I was suffering from constipation. I had pressure and swelling so bad in my rectal area, that it puts pressure on my tailbone and my nerves. On a scale of one to ten pain-wise? This is a twenty-sometimes a fifty. Last year I actually went into shock from the pain-which had the ER doctors loading me up on Dilauded while they figured out which surgical route to take. (If you aren’t familiar with that painkiller-look it up)

Thankfully this time around my problem was considered superficial enough that while I spent the night in hospital-I avoided the knife and all the drama that come with it. (though I had to yet again have another CTScan-I hate those things) 

I had developed yet another rectal abscess. 

(TMI? Try living it!)

That’s my eighth one in thirteen years. While the one I am currently recovering from is my weirdest case- it’s thankfully not my worst case.

The worst abscess was actually the one that started this mess to begin with. The one that was caused by something women do every single day. I gave birth naturally to a 9 pound baby and tore internally while pushing. Only, no one knew at the time that I tore. So in the months following delivering my 9 pound bundle of joy, I wasn’t in the best health (fevers, rashes, swelling that couldn’t be explained) It wasn’t until three months later, I was rushed to emergency after losing the ability to sit a surgeon realized what was happening and had to quickly take action with emergency surgery.

I was told that the infection had been so bad that I had come within about 24 hours of losing a good chunk of my bowels and I was the worst case the surgeon had ever seen.

That year alone I had more months under nurses care then I had without them. I had two surgeries that year, ten months apart. My mother had to take a considerable amount of time off work, not only look after me during my recovery but to look after my baby. My baby- who for months I could not look after. Who I could not pick up or hold unless someone brought her to me because I was confined to my bed or the couch in pain. I felt helpless and useless.

Every day for MONTHS nurses would have to come into my home, pull over two meters of packing out of my body (as the wound heals and shrinks-the packing amount shrinks) wash, measure, check for new tracts (at one point there were three tracts that stemmed from the main one), then repack the wound… over and over again.

EVERY.

SINGLE.

DAY.

This is NOT a pleasant process-it’s embarrassing, extremely painful, it wears you out mentally, physically and emotionally.

I always describe the pain of both the abscess and the packing/cleaning process as this:

Think of what a wire bottle brush feels like. Now imagine what that brush may feel like shoved up your ass constantly, sloooowly twisting, while someone pours hot acid into the wound. The pain in that area then shoots outward to all other points of your body-causing your entire body to stiffen, hurt and throb. 

Sounds pleasant right?

I got through it that first time- but with the warning that I had developed what the surgeon referred to as a complex fistula. A horseshoe shaped tube now permanently inside my body, intertwined with my sphincter, that would cause my infections to reappear from time to time and there was nothing the surgeon could do because of the location of it. Of course I don’t develop the regular fistula. I had to go that extra mile and develop one of the worst ones.

Great.

So I went on with my life.

I tell this joke to my kids when they are upset I am ill. I always try to lighten the mood. Laughter IS the best medicine.

“If I were a dinosaur-what kind would I be?”

“A Mommy-Sore-Ass”

The infections have become a painful pattern in my life. There is no rhyme or reason to how or when they develop. I usually go years without one- suffer for about six weeks from the time the abscesses develop, to them knocking me out in the OR or ER to drain it, to when I am discharged from nurses care weeks later.

At this point I am a professional at these things.

Unfortunately, for reasons we can’t explain- I have now gone from suffering from the infections every few years to every six-seven months.

If you read my blog entry titled “I’m Still Broken” You will see I actually discuss my anxiety levels toward these infections and I was right… it did return. I am just lucky it didn’t happen while I was in a foreign country. I was lucky it didn’t ruin yet another trip.

I have now had three of these in the span of the year. It’s the reason my mental health has declined. It’s one of the reasons I am exhausted. These things are the reason I feel misunderstood and anxious. They are the reasons I am nervous about traveling. They are the reasons I no longer go out to work outside the home. There is quite literally an uncontrollable monster inside my body that haunts me.

The fear of these abscesses is slowly taking over my life.

Now I know some of you are wondering if there is something that can be done. Prevention? Surgery?

I am STILL researching and trying to learn the answers to that question. I have tried a healthier lifestyle, vitamins, immune boosting super-foods, physical activity. Been there, done that and I still try and will continue to use alternative paths. I have sought consults from both surgeons and specialists. I have had all but one surgeon tell me that my case is too complicated and risky to try to correct. I have that one general surgeon who is convinced that he can ‘cure’ it – but after having so many other surgeons tell me my case is ‘too dangerous’ (as in the problem could be made worse… and the surgery isn’t necessarily going to be a permanent fix- fistulas are known to be problematic)  I do not want just any random surgeon cutting me open. It scares the living shit (pun intended) out of me to think that this problem could be made worse. Its easy for people to tell me “Well you wont know until you risk it-just let him try” since it’s not their pooper at stake. I haven’t completely ruled that surgeon out. I would just prefer consulting far and wide before making what could be a life/body altering decision.

The good news is next week I am off to see a colorectal surgeon who is going to look at my case. I know there has been some progress with people like me who suffer from the more complicated ‘horseshoe’ fistulas and I truly hope that this new surgeon may have some better news for me.

I also have an amazing support system. I used to be embarrassed about suffering from these but now I say ‘screw it’ and while I don’t post all the gory details- I do share when I am ill- which brings so many of my friends and family out in droves to pray for me, to laugh with me (if humor doesn’t bring you through-what will?) and to let me know I am NOT alone. Thank you to those who put up with my fantASStic medical drama.

My family gave me this card to cheer me up during infections number 4/5.

My husband is a superstar. He had been away on his lengthy business trip and when he came for a visit this past weekend and discovered I was ill again- he refused to leave until I had been dealt with in the hospital and my parents were able to arrive to help. He worked tirelessly from home for his job, around the house, with the kids and dog and with me. The night I spent in hospital I actually ended up sending him home until morning because he was falling asleep in the chair from exhaustion. He is my hero and he needed to rest.

My mother is here helping me while I recover and now that the antibiotics are kicking in I feel much better. I don’t even need pain killers today and I hope to be back to ‘normal’ next week.

So that’s it. There are more stories I have. More details I could get into-but this entry is getting long.

Perhaps maybe I will save the rest for if ever I write a book about how much having a fistula sucks : 

The PrinceAss Diaries? 

Me, Myself and Irene’s God-damn pain in her ass?

Fifty Shades of Sterile Packing?

(I really need to work on better titles….)

Like always, I hope by sharing this story that I can raise awareness. That people can understand that these rectal abscesses and fistulas are actually quite common but typically embarrassing or taboo so you never hear about it often. Most people I know that suffer from these tend to message me privately about it. I have a secret community of friends who know what it is like. I am probably one of the only people I know who say “I don’t care-I am going to talk about it-this is part of my life and I want people to know what it is and that it isn’t fun. I want doctors to find a cure!”

It’s been thirteen years of my life. I’m done.

If you have a friend or relative that suffers from rectal abscesses and you think it is ‘funny’ or ‘not that bad’ because of the location of the body and they can still continue on with life or work- know that you’re an ass (again-pun intended) These things are quite literally the most painful thing I have ever experienced and I have given birth twice. I wouldn’t wish this on my worst enemies. (Terrorists and general EVIL people-yes…. regular people… Nope) So when they say ‘I’m in pain-I can’t sit.’-believe them.

If you are in the same boat- I would love to hear from you. Especially if you have undergone the corrective surgery to fix the fistula. You can contact me via my contact page if you aren’t comfortable leaving a comment.

If you have made it to the bottom of this lengthy post- I thank you for taking time for reading this through.