#colectomy

For those who haven't seen my previous message (https://cultofshiv.wtf/@SleepyCatten/111601296163996097), I'll be heading into hospital on 2023-12-27 for an attempted reversal of my proctosigmoidectomy (Hartmann's procedure).

I'm heading into hospital at 0900 and hoping to get into surgery by or around noon. The surgery itself should hopefully be done within about 3 hours.

I am a mixture of anxious and excited right now.

I will attempt to do an update post by the evening, if I'm able to, on my Mastodon account.

In the event of the unexpected worst-possible outcome, my wife will write a short post on my Mastodon account to notify everyone.

We fit like an enfit (Tube 'verse)

This one is Steve in hospital directly post-colectomy. I have had this exact procedure done to exactly these results. This is James's POV. Some swearing, some medical lingo, and emeto.

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Steve's been through the wringer these last two days. Washer and dryer. Extra hot. Bleached. Sanitized. To hospital quality standards.

Because that's exactly where they are. And that's exactly where they're going to stay.

The beginning, Steve's exit from the PACU, had been downright frightening. Steve looked tiny and pale, and still attached to so many tubes. James Jumped up and followed the rolling bed straight to the floor, one specifically dedicated to patients recovering from gastric surgeries.

How many people are they doing this to? James had thought. The hallway was long, and the room, though private, wasn't spacious.

Steve blinked slowly into consciousness about half an hour after his nurse and transport team had abandoned them, and then promptly threw up all over his white bedding. Then all over James, who didn't realize the emesis basin and a stack of kidney dishes were actually behind him.

The nurse came in before either one of them could find the call button, for the racket of retching and shouting had apparently been audible from the hallway. James apologized for being deaf and loud. Steve backed him up with a sigh that turned into a burp that turned into a sticky, stringy hand.

A parade of techs and MAs entered and exit edthe room, getting Steve's blood pressure, changing his bedding without moving him out of it, providing a plethora of triangular graduated cylinders to collect further vomit.

Then what are all those other fucking bowls and dishes for? James wondered. Once everyone else is had gone and it was just him and Steve again, James quickly stripped off his stained shirt and zipped up his hoodie over a bare chest. As much love as he has for Steeve, James wasn't going to smell of bile all day.

"Ha," Steve had murmured, wincing as pushing out vocalizations forced chest rise. "Good idea."

"Press your morphine button." James pointed to the cord dangling half off the bed, then to the pole carrying the rest of the setup for Steve's epidural.

"It's ok--" But Steve cut himself off with a gag that brought up a trickle of something vaguely the color of Sunny D. That made James wince, too.

"See?" Jame lifted the cord and settled the push button in James's hand. "You're entitled to medicine. Every 15 minutes, even. I don't want to watch you be in pain."

"I don't want you to watch me keep throwing up," Steve replies in what can only be described as a pitiful whine.

"I'm sorry that keeps happening." James moved his chair as close to the bed as possible. He could barely reach far enough to put his hand on Steve's foot. "I'm with you till bedtime. Then I gotta go to work."

When the night nurse came to sedate Steve on another round on pain meds, he left as quickly and graciously as he could. James had had his own encounters with narcotics. Good, bad, necessary, non... He still wasn't sure where he stood. He was also going to be late for the start of the overnight shift if he kept standing and didn't scram.

Even though James watched the clock emphatically, refrigerator boxes have never seemed lighter. He barely had to push the dolly to ferry one across the warehouse. Sometimes everyone joked about the man with one arm trying to keep up with the rest of them, but that night, even if nobody was watching, it was true.

Well, it wasn't, exactly. James surpassed them by a mile. He could only think of mechanics. Scoot. Grab. Lift. Elevate... If he had a backache, he couldn't feel it. Compared to how he'd last seen Steve, the scab on James's wrist from last week's encounter with a shattered porcelain toilet, was nothing. The sweat on his brow was nothing. The cardboard dust settled on his shoulders... That might make Steve sneeze.

After he'd parked crookedly in their next-door-neighbor's designated space, James ran into the apartment, showered so quickly the water didn't even have time to fog up the mirror, got dressed, and shoveled down two of Steve's probiotic yogurts while standing in front of the open refrigerator.

Alpine wound around James's ankles. He made an attempt to put his paws into the vegetable drawer to bat at the bag of bell peppers and banana pudding multipack.

"No," James said with his mouth full.

Alpine turned and licked up a drip of yogurt that had fallen from James's spoon. "Oh, you..." James shakes his head. "I know Steve's been letting you lick the containers under the table."

After he tossed his trash and threw the spoon into the sink, James patted Alpine on the head. "I'll see you..." James thought. He couldn't remember his schedule. Work. Sleep. But always, first, Steve. "When I get back."

James shoves his feet into already-tied sneakers and throws a bag over his shoulder. He hadn't cleaned it out since he finished his associates and kissed community college goodbye. Some stupid class notes might be in there. Maybe they could entertain Steve.

Although it was the end of James's day, most people, or at least those at the hospital, were just starting theirs. After following the same maze of hallways, James found Steve's room. He waited with his back against the wall while someone in an apron yelled out "Nutrition!" and carried a cup of green jello through the doorway on a tray.

James tried not to laugh. As if Steve would eat that. Even when he wasn't puking up his guts, Steve carried an aversion to unnaturally colored things, like blue popsicles. Iced purple roses decorating frosted cakes. Bright red cherry cough medicine that James joked about using to get high, while Steve did, in fact, just use according to the directions.

When James steps into the room, he feels the oppressive hospital atmosphere settle in over his head. It's like he's broken the surface tension and plunged into a world that isn't compatible with him. Or isn't anymore.

Everything is completely the same as the night before, except someone's moved the rolling table so it emulates a bedstand, holding all necessities, which, for now, seem to be a triangular graduated cylinder with brownish splashed down the side, and the cup of jello. James notices that they haven't brought Steve any utensils, so he takes it upon himself to move the unpalatable breakfast to the back counter of kidney dishes.

Steve's still out cold, but sleeping, James thinks, instead of passed out. The oxygen cannula under his nose seems to be delivering a constant flow, just boosting Steve a little while he breathes on his own. James squints at the muscles of Steve's neck, trying to take his pulse without touching him, and then comparing the number to the speed of his breathing. Basic medical told him Steve wasn't dying. If he'd paid more attention in basic, or maybe took Air Force route and became a PJ, he'd probably know a lot more.

The chair's set up just as James left it, and he settles into the plasticized leather cushions. It's not a comfortable chair. But James didn't come here to be comfortable.

Whilst keeping one eye on Steve, James lifts the flap on his bag and peers inside. As he expected, it's a mess of student and everyday-person needs. The organization's gone to shit, if there was any to begin with. The bag has interior pockets. Maybe that was back when he was in his fuck-therapy stage, before he let OT and PT help him work his body into something he could be comfortable with. It had helped him find a job, at least. And a boyfriend.

The most interesting find from the bag, so far, is a tangled pair of earbuds. The plug is compatible with the port on his phone, so James attaches them and scrolls to his music app. After wiggling one hearing aid out and replacing it with the soft plastic earbud, James runs his finger down the available albums and chooses one at random.

Is this the real life? Is it a fantasy?

James almost starts laughing. Bohemian Rhapsody? Seriously?

Well, for a half-delirious working man shirking sleep to protect Steve, to make money for rent for Steve while he healed up, paying the parking garage in quarters from beneath the center console in the car...

Nothing really matters

Nothing really matters to--

James cuts off the end of the song before the ending notes can play. No. He doesn't want to hear it. He can't hear it. Or it'll be true. Something has to matter. Even if it's remembering to go home often enough to feed Alpine something other than artificially flavored strawberry yogurt.

James presses the button to play the next song. The first beat sounds. James recognizes it. His foot moves automatically, tapping the floor to the notes of the refrain before the lyrics even start.

Steve walks wearily down the street

his brim pulled way down low

There's a soft groan from the bed. Steve blinks sleepily and seems to be trying to stretch his shoulders without sitting up.

James realizes, too late, that he's been tapping the undercarriage of Steve's bed every time he thought he was tapping the floor.

"I'm sorry," James says, quickly standing up and moving to Steve's side so he's level with his chest and head. "Was I hurting you?"

"What'd you call me for?" Steve asks blearily.

"Huh?" James doesn't understand. "I didn't..."

"You said my name," Steve insists. "But like, mumbly. Were you, like talking while you were writing something down?"

"Mumbly?" James is still confused.

"And I think your headphones are broken," Steve points out. After a couple fumbles, he catches the dangling earbud, the one James left hanging.

Steve lifts it up so it's high between their faces.

Another one bites the dust

Another one bites the dust

"Fuck." James buries the earbud in his fist and turns off the music on his phone. He turns off his phone for good measure. "I was-- I thought--" James shakes his head. "I didn't think you could hear it. I didn't mean to bug you."

"No, that's ok." Steve scoots his body a millimeter closer to the pole of epidural machines. The push-button has made its way to the floor again, so James bends to grab it and give it back.

"But," Steve continues, after giving himself a good dose of painkiller, "Why's my name in it?"

James hast to think on it. There's a "poor boy," but he doesn't have a name... Another one bites the dust is, well, about a serial killer... but...

"Oh." James points upward to show his realization. "No one's ever broken the news to you?" He goes for a sly smile, but laughter is trapped in his chest and throat.

"What news...?"

"You did it," James informs him. "You're the perp."

"I-- what?"

"Steve walks wearily down the street, his brim pulled way down low," James recites.

"That's in the song?" Steve asks, as if he isn't sure he believes James.

"It's the first word. 'Steve.'" James can contain his laughter no more. "Everybody just knows 'Another one bites the dust.'"

"Wow." Steve ponders the ceiling. "How many people did I kill?"

"I don't actually know." James furrows his brow. "I can put it on again and we can count." He looks down at the janky earbud in his hand. "Or you can keep it a secret. 'Cause if anybody here in the hospital catches wind that you're a criminal, they'll probably send you back to prison."

"You'd bail me out, right?" Steve manages to pry his spine from the mattress using the strength of one elbow. Though he's speaking, he still has all the tells going. Quivering lip, pale face, clenching jaw...

Steve looks at the graduated cylinder as if it's a bacteria sample for a biology project. Colonies to numerous to count. Remain sealed due to unidentifiable contents.

"Should I not watch?" James asks gently.

Steve shrugs. He lets saliva drain openly in expectation of the first wave. "Bail me out of here?"

James smiles sadly. "That's not exactly how things work around here. Sorry." He pauses. "And that damn yellow gate with the meter in the parking garage-- it's eating up all my gold doubloons."

"But," Steve asks in a small voice. "You'll stay."

—Warning for hospital and mental health talk—

And believe you me, that was a legitimate concern of mine for a little while (with my doomsday thinking and the scale of the operation). I’ve had a Living Will and Power of Attorney for ages, but I felt the need to ensure they were accessible and in the hospital’s possession specifically before this procedure. It’s not that the colectomy was especially dangerous, but it makes bigger incisions than I’ve ever had before and takes out a larger part of my body, therefore increasing the risk of things like internal bleeding and other complications.

Before leaving for the hospital at 5am this morning, I did a huge roundup of at home responsibilities, including sending out your holiday cards, wrapping all my Christmas presents for my housemates and beyond, and helping DD get set up for a week without me to help out with childcare and chores. (DD will stay with me during the days for visiting hours, but must go home overnight per COVID restrictions). I was really actually scared I might not make it home, and I wanted to be sure that everything was in its rightful place, just in case.

But guess what? I’m essentially fine. The procedure went very well and according to plan, and there were no difficulties (except the fact that I have now over 10 laparoscopic scars on my stomach, several of which have been opened multiple times).

I hurt A LOT. I have an epidural, and I keep pressing the button every 15 minutes to get it to continue doling out the good meds. It keeps the pain down to something manageable, but not anything good.

Pre op—————————-> Post op

The best things about being on the floor are eating ice out of a cup, snuggling my stuffed animals, and watching movies. DD and the kids plan to vide call me in a few minutes, too. :)

CW: I’m going to be talking about despair associated with chronic illness. Death mention.

Here are the major available IBD treatment options, listed in the roughly the order I’ve taken them (or for the ones I haven’t yet taken, the order in which I expect to try them).

So I’m about to state a fact that might be obvious, but tbh I have no idea if people who aren’t chronically ill (or close to someone who is) understand this at all; I certainly didn’t when I first got sick, but I was also 14 years old, so.

Treatments for chronic conditions often don’t work. Or they work for a little while and then stop working. And there are only so many options out there.

Sometimes patients have to try a lot of drugs to find one that works, only to have it stop working shortly after. Sometimes patients try them all and nothing works.

The literal thought that went through my brain upon receiving my diagnosis at 14 was “now the doctors know what it is, so they know what pills will make it go away.” lolsob. I was not ready for what was about to happen. No one is, though, I guess.

I have exhausted roughly half of my options as you can see above. So I’ve had this condition for 14 years, half of my options are gone, almost all of them only worked for a very short time, I’m 28 years old, you do the math. People like me spend a lot of time staring into the abyss, counting the number of treatments still left, and just kind of hoping that we exhaust them slower than new ones get discovered and tested (and the drug discovery pipeline operates really fucking slowly).

For people who exhaust all of their options, the only choices from there are to try experimental drugs (i.e. clinical trials), which are even less likely to be effective and in some cases may not even be safe, or to just live with our illness unchecked, which for many of us is straight torture and/or not survivable.

I don’t know how to calibrate how afraid I should be. I had flare-ups as a teenager that literally almost killed me, and so when I think about running out of treatment options, that’s what I imagine my life becoming. But there’s a pretty fundamental physical difference between me now and me then, which is that I am now missing the organ that gave me all my worst problems, so....?

My diagnosis now being Crohn’s does mean that my small intestine could choose to start being a brat at any moment, but historically it hasn’t done that and I have no reason to believe it will start. I sure hope not, because one cannot simply ditch their small bowel.

Trigger warning! Graphic photos in this post.

4-6-17 In the very first photo, I have a horrible tooth ache and had no idea the pain and agony it was going to bring. It ultimately changed my life and for a very long time it was changed for the worse. In the photos following, you’ll see me change and look like death and then recover. You’ll see me living life to the fullest but behind closed doors or under my shirt rather, you’ll see how much I’ve had to overcome. This is my story.

On October 30th 2013, I had a colonoscopy and was diagnosed with Ulcerative Colitis(UC) which is a chronic inflammatory bowel disease(IBD) and an autoimmune disease. I was prescribed Canasa suppositories and my symptoms when away for about a year or so and then came back. I had to get a new Gastroenterologist doctor because my previous one had retired. He wasn’t much help anyway. My new GI doctor was amazing and caring and she saved my life. She prescribed me Lialda(NSAID) and Uceris(steroid).

At the end of March 2017, I had horrible tooth pain and called my dentist and they prescribed me Tramadol and Augmentin. The Tramadol made me sick so I called and had them switch the med and they gave me Clindamycin and that made me sick too. They gave me Hydrocodone and that also made me sick so they just had me taking Ibuprofen and Augmentin. I started to have a bad reaction to the Augmentin and got sores all in my throat and mouth and was throwing up and had severe diarrhea. I finished the antibiotic but went to the er because of the pain in my mouth and the vomiting. Mary’s magic mouthwash was prescribed to me to help with the sores and also nausea meds. The only time I was able to get any sleep was when this mouthwash numbed my mouth and throat. For weeks, I was unable to eat or drink anything nor was I able to take my UC meds and my heart rate was high. I went to the er multiple times during this whole ordeal because I couldn’t stop throwing up and all they would do is give me fluids and nausea meds then send me home. I went to an er and waited for 3 hours all the while throwing up with no end in sight and ended up leaving to go to a different hospital. On April 15th, I was pacing the house back and forth because I was miserable and didn’t know what to do. I didn’t want to go to the er yet again for them to just send me right back home. I remember I was pacing by the front door and my husband Issaac went to check the mail. I watched him and then started to say his name over and over because I felt like something was really wrong. Next thing I remember is Issaac kneeling over me and having shoes stabbing me in the back. I had passed out and my eyes were open the whole time but I was unresponsive. Issaac had ran in and thought I was dead. He called 911 and they wouldn’t answer. He used my finger to unlock my phone and dialed 911 and had both phones ringing and finally got an answer. (Fun fact for iPhones: if you press the big button on the side it will call 911 and they can track your location. Dialing 911 will not allow them to track your location.) The ambulance took me to the er and they did 2 EKG’s, CT scan(only after Issaac asked them to because I hit my head when I fell.), chest X-ray, and blood work. I was also tested for CDiff many times but it was always negative. Again, I was given fluids and sent home. They said it was normal for a lot of people to live with an elevated heart rate so they weren’t concerned. A couple days later I went to my primary care doctors office. My doctor was on maternity leave so I saw a different doctor. He did blood work and then wanted me to take depression meds. That was a hard NO! He said I wasn’t getting better because I was depressed about being sick. Yes, I was absolutely miserable and sad about it. BUT, there was something more going on. I wasn’t getting better and I knew it wasn’t my fault. I had to keep advocating for myself because I wasn’t getting help from any of these doctors I’ve seen. I think I went to the er again at some point and was sent home. Then they called me and said my potassium levels were too low and they didn’t think I’d be able to get down the prescribed potassium drink. So we went back to the er. Again. The er wouldn’t take the word of the doctor from another hospital so they did blood work again. We went to a different hospital because the wait at the previous one was way too long. So I received potassium through an iv and that is not comfortable. It burned as it went through my arm. I was also given Magnesium. I was sent home the next day.

Even though the sores were finally gone from my mouth, I was still struggling to swallow. I had my GI doctor schedule an upper Endoscopy which I had done on April 20th. My esophagus had no damage and there wasn’t anything stuck in there. While I was under anesthesia, my GI doctor did a Flexible Sigmoidoscopy. This a colonoscopy but only through a small portion of the colon. It was then that I finally, FINALLY after a month of being so sick that I was admitted to the hospital. My doctor said I looked like I was going to die. She said my colon was so severely inflamed that she couldn’t let me go home even though a patient being admitted after a procedure being done by her makes her look bad. She saved my life and I’m eternally grateful. I had 10 er visits and a scheduled dr visit and none of these doctors thought to have my colon checked knowing that I had UC and continued to show anemia in the blood tests they all ran. It all finally made sense. I wasn’t able to take my UC meds and I was taking 800mg of Ibuprofen for the tooth ache I had. This is what caused my UC to flare up. Why couldn’t 11 doctors put that together?

While I was in the hospital, I received 3 Iron infusions to raise my hemoglobin. I also had a speech therapist come in and she helped me with my throat issue. I was still struggling to swallow and she said that I was protecting my self subconsciously. She worked with me and I was finally able to swallow normally. I was so happy to finally eat a meal without a struggle. I was released 5 days later on April 25th even though I felt I should have stayed. The very next day I woke Issaac up because I was shivering and my teeth were rattling like crazy. My heart rate was 145. Issaac called 911 and we went to the er for the 11th time within a months time. I was put in the observation unit at Methodist which was in the basement because they didn’t have any rooms in the er available. I remember telling a nurse that I needed to go to the bathroom and I wasn’t allowed to get up on my own. She said ok and that she’d be back but when she got back, it was too late...She was gone for a long time. I at least was wearing a hospital gown. I was later put into constant care in the er. My heart rate had gone up to 180 and I was shivering and rattling teeth again. It was uncontrollable and the nurses looked at me like I was faking it. They hooked a heart monitor onto me and suddenly changed their tune because my heart rate was at 200. I believe they gave me aspirin and eventually I was transferred to another room where I waited for a permanent room because I was being admitted again. On April 28, I was admitted and I had another night of the shivering episode with my heart rate at 190. I’m trying to remember what this felt like but I can’t. I was so out of it and not even aware of my surroundings. It was on this day that our grass had been cut and it turned out to be our next door neighbor. We were very thankful for that.

A few days later, my heart rate was around 100 and my hemoglobin was much better. The diarrhea had slowed down so I wasn’t losing as much blood(because of UC) but I wasn’t eating either. I had iv fluids and they wanted me to drink Gatorade but my body was retaining fluids and I was swollen. That was a very weird experience. They did an Echo Cardiogram which turned out to be normal. My ejection fraction was 65% and 55% or above is considered normal. I know this is what they said but I don’t really know what that means. On April 30th, I received a blood transfusion because the retest of my hemoglobin showed 6.6 grams per deciliter and it should be for women between 12-15.5. A blood transfusion is scary. For the first 15 minutes, the nurse has to stay and watch me as I receive the blood to make sure I don’t have any adverse reactions and reject the blood. It turned out to be fine and I received at least a pint of blood. I feel I received another pint but I can’t remember. So I’ve been in the hospital for 10 days so far and I’ve been taking a steroid called Prednisone this whole time to treat my UC. I was also on morphine for the pain. I received physical therapy to help me walk but they were 3 days late. It turned out that there wasn’t an order for pt even though the doctors mentioned it every time they visited. On May 2nd, I was in severe pain and I went about 4 hours or longer without pain meds. The doctor was supposed to call them in and ended up leaving for the day without doing it. The next day, my bloodwork still showed inflammation so my colon wasn’t responding to the Prednisone. All the Prednisone did was make my head hurt sooo bad. I was taking Tylenol for it and it did nothing. My head hurt non stop for many days. I had warned them that Prednisone wouldn’t treat me right. I had taken it before and it made me so dizzy I had to have Issaac drive me home from work. This time it was just the severe head pain.

On May 5th 2017, I’m still in the hospital but I’m about to be released. For some reason my doctor was switched to a different doctor. This doctor decided to schedule for a colonoscopy. They gave me the bowel prep to drink with some clear Gatorade. This stuff was horrible. I’m supposed to drink it all within an hour and every minute of it sucked. I somehow managed to get it all down at the end of the hour. But then...I adjusted my body very slightly, and I threw it all up! I didn’t know it was coming and I had zero time to prepare for it. I just threw it all up all over my gown and in my gown and all over the blankets. I said to them, “I don’t understand why I have to do this. I have had severe diarrhea and I can’t even eat. There’s nothing in my stomach.” But they made me do the prep again... This time I drank it over the course of like 4 hours and managed to get it down without throwing up. I had the colonoscopy which they said went fine...I was still severely inflamed and they wanted to start me on a biological medicine called Humira and continue the steroids. During a colonoscopy, they insert a colonoscope into your bottom that transmits an image of the lining of the colon. The scope blows air to expand the colon so the doctor can see better. Well, after the procedure I was actually feeling alright but I had so much pressure in my belly and I felt like I needed to poop. I tried over and over to go on the toilet and it just wasn’t happening. But finally, it happened. And I was in bed...The nurses hadn’t been in for a long time and didn’t plan to be in for awhile. I was so embarrassed that I had Issaac clean me before they came in. Imagine a father changing a dirty diaper and gagging the whole time. This was Issaac and he kept running to the toilet afraid he was going to puke. To this day, we still laugh about it. It doesn’t matter how horrible the whole experience was, I can still laugh about it. Later that day, I was feeling a lot of pain and they had moved me to a different room with closer care. I remember this floor had some of the best nurses I’d ever had. Hospital policy was that a patient was to be bathed when changing floors. Issaac stood out in the hall as they transferred me from one bed to the other. This was an out of body experience and I can remember it so vividly. As they raised me off the bed, I started screaming in pain and continued to moan in pain after they transferred me to the new bed. I didn’t have any pain meds but I shouldn’t have been in pain. They were ordered not to give me pain meds because the doctor wanted me to be clear headed when they talked to me. I could tell the nurses felt so badly for me because of how much pain I was in. Issaac could hear me screaming down the hall. i was finally given multiple doses of morphine but it didn’t really touch the pain. I then had a CT scan done to see why I was in so much pain. The CT showed air outside of my colon which meant that the doctor had perforated my bowel during the colonoscopy. They started me on antibiotics and said a surgeon would be in to speak with me about possibly removing my entire colon. The surgeon came in and discussed my options. I either stuck with the antibiotics and steroids to see if I heal or I have the surgery. They said it was very unlikely that my colon would recover because there wasn’t any good colon left. I would have had to take a biological medicine for my UC which meant that my immune system would be even weaker and I wouldn’t be able to work in the Microbiology lab where I was currently employed. Even then, there was a slim chance of recovery. She said that even if I didn’t have a perforation, that this surgery was inevitable in my case. I cried and cried and cried. I asked her if I would still be able to have children and she said yes and that she would put extra tissue around my ovaries to protect them. A lot of people said I should get a second opinion but I wasn’t in that state of mind. All I could think about was being able to have children. I also did not want to be on medicine for the rest of my life.

On May 6th 2017, I decided to have the surgery. I had a total abdominal colectomy and an ileostomy surgery. My entire larger intestines was removed and they pulled my small intestines outside my stomach wall and created what’s called a stoma. The stoma is covered with a bag that has adhesive on it to stick to my skin. I essentially poop in a bag. I wish I remember more from this time. I can’t remember what it was like waking up to this. I do remember emptying my bag into the toilet though when I was finally able to walk. I couldn’t go alone though. I had to call the nurse every time I wanted to use the bathroom and there was an alarm on the bed if I tried to get up. One time I let it go off and went anyway because I had called them saying I need to go to the bathroom and they took too long. I don’t blame them. Each nurse had way too many patients to care for. At this point, my arms were completely black from all of the blood draws and IVs I received. Each nurse that came to draw my blood was so confident that they could get it even though I told them they wouldn’t be able to without the ultra sound machine. I had a nurse poke me 3 times and one of those times was in my thumb. Every time, they always had to call the team with the ultra sound to draw my blood. I had a Russian nurse for a few days and she was really hard to understand as her accent was strong. My issue with her was that she wouldn’t listen to me and would disagree with everything I said. I had been in the hospital for a few weeks so I knew what to do and I knew what my body could handle. I also had a male nurse who led me to ask my case manager if I could only have female nurses. I didn’t have a problem with the fact that he was a man. My problem was that he was too rough and he probably didn’t know it. I didn’t blame him for that but it was hurting me unnecessarily. He also forced me to walk to the bathroom on my own without help when I wasn’t supposed to be alone. I started taking walks with a walker through the halls after getting pt. Everyone who passed me cheered me on. It was extremely hard. They say every day you spend in bed is 3 days off of your life expectancy. I had been in bed for basically a month or so. After this surgery, I was on a morphine pump which I controlled and Oxycodone. The oxy kept me loopy. I was on 15 mg every dose. I hated taking it. I didn’t worry as much with the morphine as it didn’t really work for me. It helped give me relief for a few minutes but then faded. I pushed that pump button every time I was able to though. It was every 15 minutes. On May 12th, I finally went home.

Through the next couple of weeks, I had follow up appointments with my GI doctor and my surgeon. When I went to see my GI doctor, I told her about some pain I was having on my bottom. The pain from it made it very hard to walk or move or even sleep. She said it looked like an abscess but to confirm with my surgeon. So I went to see my surgeon and for some reason on that day I was pain free and happy so she didn’t think it was concerning. On May 26th I went to the er for the 12th time. I had a fever and was in so much pain. The er took me back immediately since I had just had surgery and they feared I was septic. It turned out to be an abscess and they took me into surgery to drain it. I was given anesthesia because of how much pain I was in. Thankfully I wasn’t septic and this turned out better than they originally thought. I guess since I was on steroids for so long, my body wasn’t able to fight off an infection so the abscess was very large and inflamed. I received another unit of blood and I still had a fever for a few days. The antibiotics were making me sick and I was really struggling to eat. Between the beginning of April and it now being the end of May, I had lost 30 pounds unintentionally. May 31 2017, I was released from the hospital for the third and final time.

Over the next few weeks, I was walking around the neighborhood and family and friends were coming to help care for me so Issaac could go back to work. I started to taper off the Oxy and that was not fun. I was taking such a high dose that I would nod off mid conversation. When I would wake, I would feel like I slept for hours when it was really only minutes and I would get upset because I was so tired and never really got rest. Even though I was high, I remember how I felt and the things I did. I remember trying to dance with Issaac in the kitchen when he was walking me through the house. I remember contacting people on fb that I hadn’t talked to in a long time. All I wanted to do was talk. I was oddly cheerful and accepted my situation. Anyone who really knows me knows that I am a half glass empty kind of person so this was unusual for me. I didn’t realize all of this until after I tapered off the oxy. My Dad was the only person who told me he was worried that when I came down, I would not feel the same. He knew that it wasn’t really me. I remember going to the ball park to watch a softball game with family and I ended up having to leave because I was in pain and I didn’t bring the Oxy with me. I started to cry because I was so embarrassed and sad that I wasn’t strong enough yet to be at one of my favorite places in the world. On June 18th, I was tapering and I had to have Issaac come home because I was feeling horrible and I couldn’t stop crying about it. I called him because I was home alone at this point because I could finally walk to the bathroom alone and make my own food. So I had to call in another order of Oxy to taper down slower because I was trying to go too fast and I was having withdrawal symptoms. I really don’t know why anyone would want to go through that. Eventually, I was completely off the Oxy and I was so happy to not have any withdrawal symptoms.

So Issaac went back to work after spending every single day with me in the hospital. I didn’t have short term disability because there was some confusion when we signed up for insurance together. I tried to appeal and it was denied Mid June, people from work hosted a bake sale at work to raise money for me. Just thinking about it brings tears to my eyes. I never felt that I had people in my life who cared enough to do something like this. Someone also created a go fund me page as well. I was overcome with shame, shock, and most importantly gratitude for such amazing acts of kindness. Issaac handed me the money that was raised and I just lost it. I was so emotional and just couldn’t believe that this was real life. I feel like this whole ordeal is something you hear about happening but never think that it’ll happen to you. Thank you thank you thank you to everyone who contributed to raising money and helping me get better and for all of the continuous prayers during this time.

July 4th 2017, I finally returned to work. You can see through all of the photos around this time and the rest of the year that I was enjoying life the best I could. In October 2017, I started to have issues with my skin under my bag. This became an issue off and on for over a year. I had been using the same brand of products since surgery for a year and then all of a sudden I couldn’t use it anymore without having an allergic reaction. My skin would start weeping and oozing and was extremely itchy. It also burned badly which over powered the itchiness. Throughout the year of 2018 I struggled with this a lot but I still went on living. The photos I provided are to show how one day I’m very low spirited and the next day I’m blissful. And I was. I was very blessed to enjoy time with family and to go on vacation with Issaac to the Niagara Falls and to go Gen Con. Gen Con was really hard. There was so much walking and I was so weak and still hadn’t built muscles back up. If I stood on my tippy toes, I would fall over from the pain in my calves. Standing outside in the food truck lines was the worst. The heat was making me sweat and interfering with the adhesive of my ostomy bag. Little did I know that this incident would make my skin worse than it ever was before. The photos are a reminder to me of what I’ve overcome. I wanted to create a timeline and show myself how strong our bodies really are. If you’ve read this far, thank you. Part 2 will be posted soon.