My Rockstar Piercing Part 2

Remember where we were last week? I was just going into surgery for an abscess that Ketchup Klinik had multiple opportunities to catch, from ER doctors to my PCP, not to mention at least 2 in the gastroenterology department. Now I’m under the knife from Holy Hospital, who caught it in under three days.

WARNING: GRAPHIC AHEAD

I wake up. They tell me what they’ve found. I’m not happy. It is an abscess as they presumed before I went under the scalpel. It’s not only an abscess, though. It is also a fistula. To dumb it down entirely, it’s a hole that bores through your body, and this one bored through to my anus. I can count myself lucky that I don’t have a fistula that bores into my vagina (pus and/or fecal material moving through this opening) or my abdomen. I knew I’d get fistulas when I was diagnosed with crohn’s, I just didn’t think it would be so quickly?

So, ok, I have this open wound near my rectum. It needs to stay open and drain all the gross out of it. If it closes, that could be very very bad and require *shudder* cutting open in the office, or another surgery.

Turns out I should have been thinking about the other surgery.

I had a phone call with Shannon, GI. She was quite contrite. Very apologetic. I was pretty angry with all of my Ketchup Klinik’s doctors and nurses at that point. She said she wanted to see me ASAP and that I might need to see her surgeon there just to make sure we were all good. I said fine.

I knew they were going to cut me. I’m not stupid.

I got to Shannon’s office, she examined me with a GI doctor that I had never met, and they agreed that I needed to see the surgeon. Like right now. I go up to see the surgeon. He schedules surgery for Thursday. It’s Tuesday. He sends me to his nurse to pre-register and get some blood drawn. I’m internally freaking out because THURSDAY? I’m usually made to wait a week or more. I’m not entirely complaining, because I like getting it over with but damn! And the way you know what time your surgery is is by calling in the night before and entering a code, and it tells you what time to show up. I was to show up at 6:30am.

DAMN. (WARNING: IT’S ABOUT TO GET MORE GRAPHIC)

I was there to have my rockstar piercing placed. This piercing has been done on people since Hippocrates. One of the oldest medical practices still in use today. I was having a seton placed. It’s dangerous to do colo-rectal surgery on a crohn’s patient; anything you do that could possibly compromise their sphincter muscles (especially by cutting them!) just threatens their future continence. This particular surgical move is designed to not do that, it’s designed just to keep it open so the wound can drain entirely. It loops through the now-open abscess, through the fistula opening, out the anus, and is tied in a loop. Left at the end of the loop is the extraordinarily painful (but I wouldn’t find out until later) what I call the “bunny ears” - if they go one way, it’s super irritating and I must move them as soon as I can. If they go the other way, I’m crying and I need to move them right now and I don’t care who sees me. Also, the wound leaks. Constantly. When I got my hysterectomy I threw away all of my “period underwear” in a gleeful hysteria (see what I did there, nerds like me, haha?), thinking that I would never again need them. How wrong I was, and just over six months after the hysterectomy. Blerg. I thought I would never need a pad, ever again. Wrong. So very, very wrong.

Pretty damn accurate. See those "bunny ears"? Torture.

Ladies - (and maybe some men who have been through similar surgeries) - have you ever worn a pad to the point where you’ve essentially got diaper rash? Yeah, that happens. Luckily, it was suggested to me that I should use a pad for incontinence, and hey buddy, those are freaking amazing. I used period pads from late June to late August, and it was super painful. From late August to date I’ve used the incontinence pads, and no diaper rashy feeling. Amazing. The period pads have a plastic-y feeling to the top, where the incontinence pads have a soft, cottony feeling. Either way, I’m much more comfortable now. Just a note, in case you’re ever in my position. Y’know, wearing a pad from late June to date. Except I fold it and stick it right where it needs to be. Gross, right? I’m so over it. This is what I’ve been living with. So this is why I call it a rockstar piercing - if I have to deal with this humiliating and disgusting piece of rubber band that causes me embarrassment on a regular basis - I get to call it whatever the fuck I want. I’m a damn rockstar for dealing with this. Until now, I’ve said nothing, and the only people aware of it were my immediate family, and when I say immediate, I mean my mother and my sister. My brother-in-law is sort of aware, and my nephews know that my butt hurts all the time.

It also matters which side of the pad the rubber band is laying on. That can potentially cause you great pain.

All the small things.

All the small things are leading me to one of the biggest things that may ever happen to me. I still don’t know all of the details, because I haven’t talked to the main surgeon yet. My MRI and consultation with the surgeon (who - I might add - is the Associate Dean at Ketchup Klinik) are on October 22. I should know more after that date, and if I am indeed an eligible candidate for the stem-cell research. Another thing that I should add is Ketchup Klinik is the #1 hospital in America for gastroenterology and colorectal surgery. I am *exactly* where I need to be (even though a ride to the main Klinik is a nearly 3 hour ride one way).

Here’s what I know about the stem-cell study so far: they will take a biopsy of my stomach fat, and they will send that fat to the lab people that will grow tissue/stem cells from that biopsy. When the tissue is ready, I will have a surgery where they will use my own tissue to fill in that space where the abscess was, and sew me up. The hope is is that it will not immediately become a problem again and I will need to be cut back open and another seton placed. One of the deciding factors to me being a proper candidate was being on humira for x amount of time before doing the surgery. When I meet the surgeon for the first time, I will have been on it for two and a half months, let alone when I actually have the surgery.

I’m really really really excited to be a part of this study. From Hippocrates to me - there may be a feasible way for doctors to safely close a rectal abscess - because right now there is none. You have to live with a seton until it stops draining. It could take years. Yes, yearS. My second surgeon told me about a guy who had one in for EIGHT years. I wanted to cry when he told me that. As I’ve already said, it’s humiliating, embarrassing, painful, and wholly uncomfortable - physically and mentally. So when they asked if I would be willing to be a part of this study I nearly screamed yes. I’m just hoping that it works (along with my entire medical team, they are all rooting for me).

I want it to happen - and be successful - because it’s a legacy for me. I may be playing a small part, but it’s a part in helping a humiliating, embarrassing, painful, and wholly uncomfortable experience for someone else to be way less than that. They might have to live with it for a short period of time...maybe they can get it down to almost no waiting period at all! but I helped to make it less shitty for another human and for me that’s just...what my life is about. If I can’t directly help my kids become functioning adults, I’ll help adults with their struggles, because lord knows that I’m struggling. I’ve said this before and I will say it again: Peer-to-peer support is proven to be more effective than professional help. What I’ve written above may not help you right now. You may be completely grossed out and wondering “Jill, what the actual fuck were you thinking by telling me that?” but you may have to go through something similar one day. When you have a digital rectal exam (and you will, don’t shy away from it, wuss) just think to yourself “Jill has these on a regular basis, nearly every time she sees a doctor, which is weekly!” When you have a colonoscopy, remember that I’m 4 ahead of you. When you have an endoscopy, I’m 3 ahead of you. If it’s shots/setting IV’s, I’m about a billion ahead of you. None of it is that bad, and you should be getting your proper checkups for your health. If you need someone to verbally walk you through it that’s not a nurse and will not bullshit you, feel free to contact me! I will give you the no bullshit guarantee!

I’m here to help. I *want* to help you. I want to tell you that it will all be ok. I know because I’ve been through it, and today it’s all ok.

xoxoxox