ureteral stent: it’s as upsetting as it sounds

One of my commitments on this blog is to write about my digestive journey, specifically 2010, officially known as my year in digestive hell. I started writing about 2010 a while back: you can read the first two entries of the story here and here so you’re all caught up on my first holiday of laying on the couch in chronic pain and what it’s like to have kidney stone surgery. It’s important to me that anyone reading this blog understands that my rationale for sharing these stories has everything to do with the constant emails I receive from people here and on facebook inquiring into the specifics of my own digestive journey, as they themselves are going through digestive hell. In part, sharing on this blog keeps me from having to constantly write individual emails. But I also feel that as an educator (in my professional life), it’s my “job” to educate people about their bodies, having lived through a lot of tests and dead ends and wrong turns. I realize some people will never struggle with what to eat, but my general experience is that given our American diet, most of the people I know have some sort of “problem” with some kind of food at some point in their lives. So, whether you’re reading for fun or to learn, I’m glad you’re here. I hope you can accept that parts of these stories are kinda sad, parts are funny, and more often than not,  down-right disgusting. I’m going to do you all a favor and not shy away from any of those parts, because living with chronic digestive drama is hard, often confusing, and some times scary.

So, back to 2010. When we left off, I had just had kidney stone surgery and was hanging around the house for 2 weeks with a ureteral stent (it’s as upsetting as it sounds) wedged into me and the only evidence I had that it was truly there was the long black thread hanging down between my thighs and the images that came up every time I googled “ureteral stent.” I’m gonna go ahead and say that there are few things that make me more queasy than knowing there’s a foreign object in my body, literally holding me open so my ureter doesn’t swell shut and trap all those lovely little kidney stones from floating down and out when I peed. If you’ve had kidney stone surgery, you’ve been lucky enough to have to take little pills that make you pee the color of blood oranges (oddly one of my favorite fruits) and know that regardless of what the nurses tell you, you will still be totally surprised by how painful it is to pee after surgery and how shocking it is to look down and see the brightest blood orange stream coming out of your body, full of tiny blood clots and microscopic pieces of what was once kidney stones that were blasted to bits, now coming to rest on top the little strainer you have to pee through in order to send these bits off to lab for analysis. The best part is that you get to do this for days. And days. And days.

Because it was early in 2010 (mid January) and I had yet to learn that being a full-time Ph.D student, living in a half gutted house, volunteering at neighborhood organizations, running a creative business, being a partner to C (who runs his own business and was doing all the house renovating) and having a very full social life might be too much to handle, I did what I always did: I went to a holiday party the day after my surgery and drank wine. It didn’t occur to me not to go, despite the 5 inch long thread I saw every time I peed blood orange or the powerful pain meds I was on, or that I was pale and grossly thin and all together not meant to be in public. It took me a year to finally realize that after a hospital visit, it’s best to just stay home, but I was early on in my year of health hell and clearly ridiculous. I managed to get home from the party intact, but spent the next few weeks laying around the house, feeling awful. I was CONVINCED that having kidney stones was obviously the root of all of my digestive pain and now that the stones had been removed, life would resume and I would no longer be clutching my stomach and drinking ginger tea all day.

Turns out I was just one of those people who gets kidney stones regardless of my digestive drama. After two weeks of stone collection, I went in to have my ureteral stent pulled out because I refused to pull it out myself. The nurse insisted on the phone that anyone can pull out their own ureteral stent. I remember saying to her, “I can’t pull this thing out of my body. I’ll pass out when it’s half out of me.” She suggested I have C do it. I told her C was less likely to pull it out of me than I was and we both might pass out if he was involved. So, she finally gave me an appointment to  have a post-surgery follow-up chat with my urologist and have a nurse yank a 12 inch piece of plastic coated wire out of my crotch.

Just a heads-up on this process: Getting a ureteral stent pulled out looks similar to having a obgyn appointment. You lay on a table, legs spread, feet in stirrups, unable to see anything below the gown your wearing, hoping that nothing bad is about to happen while a nurse puts on gloves and tells you it will all be over in less than 3 seconds. You want very much to trust her and believe that she is a trained professional and is therefore more qualified to pull a long piece of metal out of your body than you are. However, when the nurse says she’s going to count out loud and pull at 3, she really means she’ll count to 2 and suddenly yank the black string from between your legs with one fast swoop and you’ll feel as though something oddly just went rushing through the lower half of your body, but you won’t have time to panic about it because you’ll be sitting there, legs wide open, staring at the 12 inch stent she’s holding up in front of you while saying, “See? That wasn’t so bad. This is what was inside of you for 2 weeks” in a voice that makes you feel completely ridiculous for asking her to pull the stent out when you could have saved yourself the trip and done it all along.

A few minutes later, when I met with my urologist, he told me 3 things:
1. We analyzed your kidney stones and they are probably forming for various dietary and genetic reasons.

2. There’s more in there, so don’t be surprised that if you decide to stop eating and drinking for awhile, or eat a lot of leafy greens, or drink tea and coffee, and eat red meat, or basically just live life normally, you’ll probably pass more. And they will probably hurt.

3. It’s extremely unlikely that your digestive pain/stomach aches had anything to do with your kidney stones. (In fact, in all his 40+ years of experience working as a urologist and being at the top of his field at a research university, he has never once heard of a link between stomach pain and the onset of kidney stones.)

My response was: Welllll maybe I’m a weird case.
He said, “Not likely.”

He sent me home with a list of things to avoid and said he hoped he never saw me again. It was the one time I actually appreciated being told that.

The problem was, I was still feeling horrible. I had constant stomach aches. Everything I ate just ripped through me and came out the other end. I resented the purple walls of the bathroom and the fact that we were in the middle of house renovations and I had to spend so much time in the most hideous bathroom in the city. No matter what I ate, nothing changed.

By March, I had dropped more weight and had a deep burning sensation in my stomach. A constant throb that made me sleep with a heating pad turned on high and pressed against my stomach and rib cage. I was hardly working and spent most days laying around my house, feeling gross and attempting to “work” by spreading things out on my bed and staring at them, as if articles would get read and papers written if I sat there and stared long enough. My doctor put me on pills: pain killers, muscle relaxants, relaxants that are supposed to help stomach spasms, antidepressants, antianxiety meds, heartburn meds…we tried random things for weeks and weeks. For awhile, the burning stopped, but the stomach aches didn’t, nor did my constant trips to the bathroom. Blood work came back negative for allergies and intolerances, despite the fact that I had cut out all dairy the year before due to my inability to keep it down.

I decided to start getting opinions from other people about elimination diets. I was in the thick of it, making dietary changes and trying acupuncture and herbs and whatever else I could find when I had a bike accident in early June and broke both my elbows.  The next part of the story involves how I got my first endoscopy and colonoscopy while rockin’ two arm casts, broken teeth and a concussion. I know you can’t wait.

 



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