The title says it all. This is not meant to be a negative entry but instead an informative one. I’ll open by saying that since my remission and surgery, my quality of life has drastically increased and I honestly have not felt this well in years. However, I think it’s still cool to have the opportunity to educate people about Crohn’s disease.
First of all, Crohn’s is different for everyone. And every stage of Crohn’s is different for everyone. However, I believe there are three states of Crohn’s, based on all my research and my own experience. The two main ones are major-flare and remission. The third is a small-flare.
In short, a major-flare lasts a long time. It’s awful. It’s debilitating and people find it next to impossible to live a normal life. Pain, extreme pain, and other symptoms over take your life. Everything that can go wrong will go wrong in this stage. Again, it’s different for everyone, but this list of possible problems is not exhaustive but include: stomach pain, fatigue, fissures, fistulas, increase risk of cancer, even higher food intolerance, nausea, arthritis, weight loss, anemia, diarrhea, ulcers, rash, liver inflammation, and a whole slew of other issues. It’s not fun.
During a major-flare, it’s rare to get it under control without medical intervention. While anecdotes exist, once in this state, you look at your medical options.
The small flare is like this but shorter. It’s more intense than remission period, but may only last days or weeks, and can be taken down by easier treatment methods. I’ve had many small-flares in my life. They began to feel like a big flare, I felt panic, and saw a specialist right away. After a medical regime, usually a much less intense one, it’d disappear. Crisis adverted. Wahoo. Don’t have to write my life off for a year at a time.
Then comes remission, which if you’re lucky, is the default stage. You see, remission sounds like it’s all better. All gone. And many websites define it as such. But it only takes a little more reading to find “lessening of symptoms,” “less intense pain,” and “closer to a normal lifestyle.” Crohn’s is forever and it’s for life, until they find a cure. So we’re stuck with it, and our default is not a normal person’s default.
In the remission state, we still have Crohn’s Disease. And because of that, we get symptoms sometimes. We are more likely to get a stomach ache. We are more likely to feel fatigued. And yes, we still have less spoons than a healthy person. More spoons than when on a major-flare, but still a spoon shortage. In the end, the symptoms are less bad. And that’s what our default stage is. That’s what my default stage is. It’s not so bad.
However, it is true that during the default/remission stages, this is when you have the most control. When looking at altering diet, exercise, etc, this is when it’s most helpful. Because many of the symptoms you have can be affected by these things. While a healthy person may have fried chicken with no adverse affects, someone with Crohn’s could become ill, even when in remission. Now, everyone has different triggers. And it’s not true for everyone. Back to that Crohn’s is not a one-size fits all. The glove doesn’t quite fit on everyone here and there’s no quitting, even if we have a glass of OJ. I realize how crappy that pun was and I hope you were able to stomach it.
The truth is, all the terms can be subjective to the doctor, patient, and anyone on the outside. It’s a complicated disease, with a spectrum moreso than actual definitives. Some people on a major flare may work harder than healthy people, and still live a normal life. While someone in a remission or default stage of the illness are still unable to even work due to their other symptoms.
So in the end, that’s where I am. The default stage. The remission state. I’m still sick, but not as bad. I’m still tired, but not so bad. I still get stomach aches, but not so bad.
And I’m so happy with that. I’m so happy with not so bad. Because after all, it could be crappier.
Chapter 4 has started. The surgery has made my life so much better. I’ve barely blogged since I told the story of that first week, and honestly it’s because… I’m doing so very, very well. And because of that, I’m very busy living that life thing!
I’ll be blogging more in the coming weeks, but for the time being, let me say this: This is where I’m supposed to be.
It’s been two weeks since I had my partial bowel resection. It removed two partial bowel blocks that I had. These blocks caused fatigued, a lot of pain, nausea, and all kinds of other symptoms. Regardless of what I ate. I no longer feel most of these things.
In fact, most of my pain is just my incision and my stomach still hurts sometimes. Expected. As they were like cut up and stuff. And because of that, I still have to rest.
But overall, my mind is more awake. I feel the most energized I have in sometime.
It hasn’t been all rosy since my last entry, and I’ll tell all as I want these entries to document what I went through. But equally so, overall, I’m pleased.
Monday past, I had to go to my GP for more painkillers. They give you a limited amount when you leave hospital, but tell you to go to the GP if you need to. I needed to. And again, that pain is still the worst of it to this day.
On Tuesday, in the early afternoon, I had my staples removed. It hurts. Some aren’t so bad to get out, but some get in there weird and it hurts. I got through it all without breaks, but I won’t lie. There are staples coming out of you, rubbing against irritated skin. It hurts.
I was told my incision was healing well and there was no need for sterile strips, sort of like a clear tape band aid for the incision.
Unfortunately, that day I thought that meant I was completely fine and I bent over a lot. It feels conflicting at time when they tell you to “rest” but to also “get up and do things.” Turns out, don’t bend so much. Walking is cool. Bending repeatedly to clean the stye that is your room is not a good idea. So said my girlfriend before I attempted it. And after I attempted it.
Anyway, around 5 pm that day, I felt a lot of pus come out of the part of my wound in my belly button. And by 6 pm, part of it popped opened wide and started bleeding. Now, I’ll tell you in hindsight this isn’t a scary thing, but unfortunately not very much of this was mentioned to me before hand.
Went to the emergency room, and saw a doctor relatively quickly for the emergency room—two hour wait. I ended up getting those sterile strips put over that part of the wound. It all washed, and I have to wear a bandage again to avoid the drainage. But put simply, here’s what I learned: don’t bend so much after surgery; the nurse said girlfriends are always right; as long as the pus is not thick yellow or green, you’re fine; clear white or yellow pus is fine; a bit of blood is fine. I was given some strips and stuff to take home in case in happened again.
Since then, I’ve went for some walks outside amd avoided bending cause apparently that’s like lifting sometimes—which for at least four more weeks, I can’t lift anything heavier than a milk cartoon. And I went out to lunch with a friend at some point, which was a big deal for me at this point.
I’m getting better, I feel positive, and if this really is complete remission, I hope it’ll be a long one. I started looking for jobs today, and by the time I get any calls I’m sure I’ll be more than ready for the interviews. My energy increases every day, and my pain levels are a little less each day.
My last entry left off talking about the rest of my hospital stay. A quick recap of the last three entries, I talk about my partial bowel resection surgery (April 22) and my short stay in hospital, and all that jazz. Today’s entry will bring the story up to date from my release on April 25 until now, describing what to expect when released from hospital, pain management, and my plans for the future.
On Mid-Afternoon on Monday, April 25 I was released from hospital. Still rather sore from having been, you know, cut open 72 hours before hand, I felt a little skeptical that I would be able to handle going home so early. Fortunately I had my partner by my side, Rachel. And a rather comfortable bed at home, with all kinds of things to keep me entertained.
Admittedly, I should have waited for Rachel to get the car and bring it to the front door of the hospital, but the first day happened to be a beautiful day and I chose to brace the walk to the car—not easy, 3 days after surgery, but it was the exercise for the day I decided.
The ride home was kind of bumpy, which hurts a little bit. And I found myself looking for ways to accommodate, such as holding my seatbelt so it didn’t press against my belly. I had Rachel stop into the pharmacy and drop off my prescription to pick up later, and then we went home. Like I talked about before, my house is only 5-10 minutes from the hospital so it fortunately was not very long putting up with the bumps or seat belt.
Once home, I settled away in my bed, and set up all my entertainment devices within hands reach. You can make fun of wireless gaming controllers, but you don’t realize how handy they are until moments like this. Before hand, I thought it was to ensure my friends and I didn’t trip over them while gaming drunk.
As for the rest of my Monday, it was mainly in bed. The bathroom was literally 6 feet away from my bed, so this made things really easy. So I slept in and out once again, and relaxed. Still pretty groggy, but I was getting there.
Tuesday was about the same. I watched TV, read comics, and played video games. I got up and walked down the hall a few times, but didn’t attempt the stairs this day. I generally stayed put, but tried to walk more than I had the previous days. I was still rather reliant on the pain and nausea meds, so Tuesday was such a blur, where nothing significant happened, when Wednesday happened, I kept referring to yesterday as Monday.
On Wednesday though, I had a stronger day. My brain was less of a fog, and I wrote my first blog since surgery. I was taking the pills just a little less. I went up and down the stairs a couple of times. Just to show I could. And I played a lot of video games.
Thursday was an even bigger day. While writing my blog on Wednesday, by the end of it, my mind and body felt so fatigued. I felt weak and I left the blog half finished. It kind of burned me out for the day. When I wrote a blog on Thursday, I finished the story I wanted to at that point, but my mind felt energized. I could keep going if I wanted to, I felt. How meta, to talk about blogging while blogging. Blogception, baby.
In fact, Thursday was the first day I started to feel my brain was close to what it was pre-surgery. Now, I’d like to talk about this for a second. The goal of the surgery was to make both my body and mind less fatigued. It was believed that the two bowel blocks were causing all my grief, including pain and fatigue. So I had felt a mind slow-down while sick, and I talked about this is an old blog about a sick body makes a dumb mind. So on Thursday, as I almost felt at pre-surgery levels, which was still a rather tired mind, I felt positive. Maybe soon, I’d feel it’d all wake up.
Other things on Thursday saw me hang out on the main floor of my house for a couple of hours. As well, my first trip outside since Monday, to see a community health nurse. Turns out my incision looks really good, the staples will be coming out the coming Tuesday, and my progress looks good. Sure, I’m still walking like a hunchback—is that an offensive term now? I’m too lazy to look it up right now. If it is, pretend I used something more politically correct—and I still had quite a bit of pain, but I was doing well. I liked that.
So comes Friday, my biggest day yet. My Nan and uncle came to visit in the morning, which was lovely to see them. After that, Rachel had plans for the next few days to housesit for people she usually housesits for, so we would be making the journey to a new place and a new bed I’d have to set up in. Once there though, they have such a cute kitty and puppers, I just had to play with them. Plus, a beautiful TV in the main room I forced myself to sit up in to watch.
Anyway, by the end of the day I had clearly pushed myself too much and definitely needed bed by the end of it all, and have sworn that today, Saturday, I’d spend more time in bed. However, I’d like to note how I took way less pain killers than I had on any day before hand. Furthermore, as I messaged friends—and I should really call them group chats, as almost all my Facebook messaging is done in one group chat or another—David and Jeff were asking me about my progress, and I honestly feel that my mind is soon to go past the pre-surgery point.
My mind, not my body, but my mind feels more awake than it has in a long time. They say long-term partial bowel blocks are not just bad for causing fatigue, but problems with nutrient absorption. Now, when I was eating, I felt saited. I felt energized. My mind is awake.
And now, Saturday, as I write this, my gut feels awesome, but my mind feels well. Very well. I had difficulty sleeping in this morning, because my mind was awake when it awoke the first couple of times. Mind you, I slept in anyway because you know, I’m young and sleeping in is great.
I’m giving myself until May 6, exactly two weeks after the surgery, and then I will pull out the laptop for work purposes. Yes, there’s a 6 week recovery period in all, but at two weeks, I’ll be well enough to do some things. I’ll start applying to jobs once again. I’ll look for freelance work. Yes, physically, I’ll probably need a bit more time, but job interviews don’t happen the next day, and most freelance I do from my bedroom. So it’s time to get back out there. It’s time to join the job hunt, to hope that my skills and knowledge can still be useful, even in this dire time in Newfoundland. Time to hope, time to live, time to do.
The last two entries focused on my first day in hospital—going in for surgery, as well as waking up, and all those anxieties. Essentially, 4000 words on one day. I can promise you the description of the rest of my hospital stay is not 4000 words a day and this entry will be much shorter, focusing on my body improvement and my release from hospital. This entry talks about Saturday April 23 to Monday April 25.
In the last entry, we left off after the first day, and at that point I’m just fatigued, barely slept, in pain, not eating or drinking, and can’t pass gas or pee. Essentially, my body needs to get going again before I can even think about getting out of hospital. Oh and I had little sleep. And the surgery, the partial bowel resection, where they removed ~9 inches of my small bowel, was a success!
My understanding, and how it went, was this. I’d have to eventually be at this points before release: off of my PCA—my pain pump controlled by me—and onto other pain killers; I’d have to be able to handle foods, so up to a full diet; I’d have to pass gas and have a bowel movement; I’d have to be up walking, even if just for a minute; and I’d have to pee. It’s why they say you’ll be in hospital anywhere from 5-10 days. Now, I ended up there only 4 days—although I attribute this to my youth, which the doctors said, and the lack of beds in the hospital, which of course no one said out loud. I mean, while I may have been suffering when I left on Monday, I was no longer priority. Our health system is strained as it is, and having experienced not having a bed for 9 hours on my first day, I can understand that someone else probably needed it—again, even if they weren’t saying this out loud.
On Saturday, I still felt pretty out of it. Not like the day before—there was a slight improvement. But still tired and worn out. And in pain. Fortunately, on both Saturday and Sunday, I had visitors. Family and friends who came with company, cards, gifts, and their wonderful humour. I won’t spend half the entry this time going on about it, but thank you to everyone who came out. Your visits meant so much to me.
As for progress on Saturday, I was moved to a clear fluid diet, which was my first time consuming liquids—water and apple juice essentially. The day before the most I got was a sponge on a stick I was allowed to dip in water to wet my mouth. This was a vast improvement. Besides this, I was at one point helped out of bed for the first time and I wish I could tell you it was easy, but it’s not the first day, or the second day. In fact, as I write this a full week after my surgery, only now are my pangs tolerable as I move around—and I’m still on lower-grade pain medication. Now to be fair, I moved to the chair right next to my bed, and that was it.
The only other thing to happen Saturday was the need to get sort of a “sponge bath” or rather a cloth in a small pan in front of you, and the nurses help clean the parts you can’t, such as your back. Now, I highly appreciated this and once again, I’ll sing the praises to all my nurses this week. All of them, and if I knew them better, I’d name them all by name. Because they should be sung praises because what they do is just great work. Anyway, it’s a weird experience. Especially being so young, you feel a little helpless. But I reminded myself that this surgery was to make it so that I would be less helpless.
Otherwise, Saturday was a day of rest. Honestly, there’s not much you can do to make your pee pee start working, or to make your bowels wake back up and work again. You can’t rush the healing of the pain of the incision on your stomach. It’s the old cliche, it takes time. So Saturday was just keeping down liquids, chilling on pain and nausea meds, and watching stuff on my laptop. I finish Mad Men finally, so I caught up on being 2015 cool. With the sleeping pill asked for early enough, I slept much better on Saturday night.
Sunday was a bigger day. While still on a clear fluid diet, I got up out of bed a couple of times during the early day and the big, big news is that I got my catheter removed so I could stop worrying about that being magically ripped out of me and suffering from some mad pain. Or any other anxiety. What this meant was that I would start getting up and peeing on my own. More progress. While the pain and everything was only just a little better today, in the late afternoon, I was farting again! Look, that sounds weird to get excited about but that means your bowels are waking up. Farting is great news, okay? Plus, you don’t know how much you miss a fart until you can’t. Okay, just me? Whatever.
By the night, I was having bowel movements and was removed from my IV. I was drinking enough on my own, and while the pain sucked, I was still able to get pain killers through pills and needles. And by the way, morphine shots still like a bitch. Like, what’s the point of that? A pain killer that hurts? It’s rude. It’s almost like one of the possible complications with surgery to remove scar tissue in the bowel is the possible development of scar tissue in the bowel. That would be insane right?! … It can happen, but let’s hope it doesn’t.
So Sunday was a great day. I was peeing on my own, farting up a storm, and now off an IV and now longer attached to a machine like some maniac who got wrecked by his mentor and left his wife and two children to die on a volcanic planet.
By the time I woke up Monday morning, I was getting mixed reports on my progress, and I was texting my girlfriend things before she came in like “I’m probably maybe being let out today but probably maybe they weren’t the chaos emeralds.” It was pretty confusing but essentially I still needed a lot of pain control it seemed, and I was only now being moved from a clear fluid diet to a full fluid diet. So I would need a day of that maybe, then a full diet. So probably maybe I’d be out Tuesday? But maybe they’ll let me out today (Monday)?
As I was drinking my milk, and Rachel arrived, I’d get the news in just a few minutes. Now let’s stop and talk about how amazing milk is and how I probably maybe shouldn’t drink it like water but it’s so good. Anyway, it was great to finally drink it again.
So the news was this, just three hours after moving my diet up, we were going to push it all the way. Let’s do the full diet at lunch and if all goes well, get the heck out, you smell anyway—which I probably did. I remember the thing I kept panicking about at this point was pain control. I was no where near ready to just live off acetaminophen, the pain is too bad.
But I ate the lunch, and everything was deemed cool. They prescribed me some pain meds, and one minute they were talking about release, and the next I was out. I felt hesitant about it, but fortunately when I was asked the question do I have someone to take care of me for a few days as the healing continues, my answers was most definitely yes. Rachel is a blessing and I know this every day.
So next thing I knew I was home, with many instructions including not lifting anything heavier than 5 pounds for 6 weeks. And my recovery isn’t close to over, just the hospital time ended on Monday.
My next entry will bring us up to real time, talking about my experience since I’ve been home, and the like. I hope for those reading, you’ve taken or learned something from it. Everyone’s progress will be different, but remember, get excited when you finally fart. That’s good news. Keep calm and fart on!
I left off in my last entry partway through talking about the first day of my bowel resection surgery. Appropriately, I got tired so I ended the blog once I felt I was out of energy. So let’s go back to Friday April 22, in the recovery room post-surgery.
So it turns out my bed wouldn’t be ready for 8-9 hours, although I didn’t know that at the time. All I knew was that it should only be an hour to two, so as time passed, I was getting more anxious about not seeing loved ones. I had been informed that my girlfriend was called to say that I was out of surgery and awake, so at least I knew she knew that. Plus, she was in charge of informing everyone else, including family members, of my status. So at least I knew that they knew I was alright—that sentence was really hard to write, you know?
Eventually, my surgeon came to see me, and this is back to my impression of them being “quick and speedy” I pretty much got a “you’re okay, everything went well. Try to get up out of bed at some point by tomorrow. I’ll see you Monday.” There may have been like five or six extra words I’m forgetting, but it was pretty quick.
Quick or not, I was able to get a lot from this. My specialist (not surgeon) was pretty sure that these blocks were causing the remaining parts of my grief. They were now gone, and any complications—whether discovering more damaging scar tissue inside or anything else—did not happen. While I lay on this bed, this very thin uncomfortable surgery bed, in quite a bit of pain, deliriousness from the meds, and feeling nauseated, I felt… relieved. Despite what I currently felt, I knew that whatever was inside me, causing everything to go haywire, was now gone. My current pain and everything was only temporary. It was all going to get better.
Now, if only I could talk to a loved one about how great this was. Time continued to pass, and eventually the awesome nurses—who I could write entry upon entry about—got me a phone to call out to her. Well, they dialed. I don’t think I could have focused on numbers if I tried.
After a short conversation with my girlfriend, I felt much more relieved. Just to hear her voice, to know that this random recovery room was only temporary and the real world was still out there was a relief. All the same, despite the pain and stuff, it was getting pretty boring in there. Presumably because you’re only suppose to be in there an hour or two, there’s no CRT TV mounted in the corner or any sort of entertainment. Plus, I still couldn’t really see without my glasses.
I believe I ended up in the recovery room around 1 or 1:30 PM. By 5 PM, I was on my second nurse (a nurse was specifically assigned to each patient), and where the recovery room had cleared out besides one person (on completely the other side) at this point, and my bed still was not ready because reasons, she offered to allow Rachel in for a while.
It was quite a relief to see the doors open and see the blur that I recognized as my girlfriend walk in. It was an even greater relief that she brought my glasses, and I now knew what everything actually looked like in the room. Although in general I was still pretty blurred from the meds. Just seeing her though was a relief. And then she told me one of our friends had been with her for the last few hours. Which, I’ll admit, almost had me crying. I didn’t really expect to see anyone for a few days, and while I understand that people care about me, just to hear he had used his day off to come in and spend it with Rachel while she was out there, probably just as anxious as me, meant the world. And this guy is a pretty busy guy, and while we’ve been close for well over half a decade, I was still shocked to see how much he cared. How much people care. So anyway David, I’m a baby and if you’re reading this, thank you again. That meant so much to me to know you kept her company.
However, once she was there, I decided to brave something. You see, in my entry on surgery prep, I talk about how I was not looking forward to the catheter. I got many kind messages saying “at least it’s put in when you’re under, that’s the hard part” and “once it’s in, you don’t really notice it. So don’t think about it.” I had taken that advice, and had chosen not to look up until this point for that reason. So I didn’t look. Until I was finally brave enough. I looked down. And… nothing was there (no jokes, you jerks). No tubes, no nothing. WHATTTTT.
The rest of my time with Rachel was short burst of chat, followed by short burst of fatigue and just lying there. After she left, I was in the recovery for a few more hours until about 9:30 PM, and was on my fourth nurse by this point. I’m TOLD this doesn’t happen that often, but it was still unfortunate. However, the nurses that were there were telling me I had to pee soon or I WOULD have to get a catheter. I asked why I didn’t get one and they said in surgery, those in there thought I wouldn’t need one. This irritated me a little, because the whole day before I was told how I WOULD get one.
But hey, as long as I pee, I don’t have to get one while awake, right? And this caused me WAY more anxiety than getting one while asleep. All the same, I tried to pee and still couldn’t.
Rachel had left behind my phone as well, which I only looked at it 2 minute bouts—it was a bit too much for me at first. And to be honest, and I told people this through the weekend, I felt I couldn’t trust my mind immediately. As I scrolled Facebook, I clicked “like” on nothing—fearful that I was reading something incorrectly and that somehow I’d support a Nazi or a 9/11 Truther.
In due time, I finally got a bed in a room and was wheeled up to the floor. As we headed to my room, in another waiting area, I could see the faces of Rachel and David smiling as we past. My heart warmed, and yet again that day, I knew things were going to be okay. I know, I kept saying this a lot and it may seem melodramatic, but I told myself I would be as honest as possible while writing these entries.
They stayed there while the nurses got me settled into the room, and as I was wheeled in there, I caught a quick glimpse of the room. It was super small, and I thought there must be a mistake. I couldn’t afford a private room, and was suppose to be in a room with three other people. Within another second, reality crashed upon me and I realized exactly how small the four person rooms are. They are SMALL.
Moving from the surgery bed now onto the hospital room bed was a bit of an effort, with all the pain still rather fresh from the surgery half a day ago. However, once I got settled in that bed, it was heavenly. It was a vast improvement from what I had been lying in, and while people may complain about hospital beds—or hospital anythings for that matter—it felt amazing. It’s a relativity thing. If you’re lying on something awful for a while, then when you get on something “less awful” it can feel amazing.
I met my new night nurse, who was once again extremely friendly, extremely comforting, and extremely competent. However, at this point I was given a deadline. If I don’t pee within two hours, it’s a catheter for me. It makes sense, cause damage down there is a big problem, but again I was irritated. Why didn’t they just do it in surgery? Now I have to be awake for this? Awful.
In the mean time, Rachel and David were led in, and seeing them both once again was lovely. And really, I only saw them for about 30 minutes before I told them both to go home and get some rest. I’d only be lying here, in and out of sleep for the night, and while I understood Rachel would have stayed all night if I wanted her to, I didn’t see the point to it. Again, it feels amazing to feel that loved, but also I’m probably just going to sleep, so go sleep in a bed, dear. I can’t deny, though, that it felt great seeing two people like them when I finally got settled in a room. It meant a lot. In fact, I was told they would have been joined by other of my friends, although one ended up sick themselves—to whom I’d later text and wish them well, to wish I believe they told me I’m not allowed to try to win that polite-off.
Now, alone I was left with the single of task of peeing in some sort of bucket. I’ll fast forward and tell you after an hour of trying literally everything, I conceded and had to get the catheter. I’ve heard a lot of different experiences about this, and some have said they understand how I feel, some have said I’m being a wimp about it. That’s cute, but it’s my experience so I’ll talk about what I felt.
First of all, the guy who came in to do it was pretty understanding about it. After asking about 50 questions, they gave me tips on how not to scream. After all it was 11:30 PM and my other room mates were fast asleep, so I didn’t want to yell too loudly. Look, I can’t really describe the phenomenon to you, but I’ll say what I remember—It was the most discomforting, somewhat painful thing I experienced in one go while I was in hospital. Keep in mind, my overall pain was usually numbed by meds, and everything else was anesthetized before being done. This was not. However, I’ll say this, once it was done, it was true: I didn’t really feel it there.
I thanked the nice man for putting up with wimpy me, and for explaining everything to me. At that, I tried to sleep through the night. Admittedly, I only slept in 15 minute bouts and when I finally thought to ask for something for sleep, it was 4:30 am and they won’t give it that close to morning. So I barely had sleep my first day.
To sum up the first day: surgery successful, pain hurts, hospitals are unfortunate places, most staff are amazing and make up for it, and I have amazing loved ones.
The next entry will likely speed up the story—the first day was the most eventful after all. The rest is just recovery, and so on. I hope to those who have to experience it, that my story has offered some honest truth, yet some comfort to how it’ll all be okay. And to my friends, I’m sorry for any awful imagery I gave you.
And to Rachel and David, thank you for making this day okay.
“You’ll close your eyes, blink, and then you’ll be waking up.”
This is the first day since my surgery that I’ve felt well enough to blog. It’s been a struggle getting my brain to properly cooperate or articulate thoughts in a coherent manner, but they say that can last for a while after the anesthetic—as well as still being on painkillers. However, I still want to do a series of blogs outlining the experience I went through starting on Friday, April 22nd, 2016, the day of my surgery. I want to write these not just for myself, or family and friends who are interested, but anyone who may have to go through something similar.
I woke up Friday at 7:30 AM. I spent the night before packing and readying for the hospital, including one last bath as I can’t have one for weeks afterwards. So all I had to do was a few last things, and the journey to the hospital began. It was a long, arduous journey…okay, I live a five minute drive from the hospital. BUT PARKING IS ALWAYS A PAIN, OKAY?! Fortunately, from the get-go at 7:30 AM I had my wonderful girlfriend by my side, who was with me every step of the way.
We arrived at the hospital at about 8:15. I had to be there for 8:30, with surgery starting at 10:30. Where the day before—outlined in this blog—I signed all my admission papers, I went straight to Day Surgery and signed in there. We were directed to wait in the waiting room for a few minutes, which is like any other doctor’s waiting room. You know, magazines that are years old lying around, and an old CRT TV mounted to the corner of the wall playing some awful television morning show where they get excited about new vacuums.
Newfoundland and Labrador is a small place, we have 500,000 people in the whole province. So generally, you can guess what people are going to be talking about based on what’s in the news, and I listened around me as people talked about the new CEO appointment of Nalcor, and found myself for once uninterested in political talk. In two hours, they are going to gash me open and rip apart my bowels. I couldn’t really care about the trivial nature of these conversations right now. Or at least, I thought that for a few seconds.
Not long after such thoughts, Rachel once again had me talking about something more positive—I believe we were making How I Met Your Mother references. But with her, everything is much better, and the trivial once again seemed comforting.
We were eventually called into another waiting/prep area, divided up into sections with some sort of medical reclining chair that patients could wait on. Once I sat down and got into my “johnny” gown—which is a name for the coat, and not because I was wearing it—I didn’t have much else to do. It turns out that they get you to arrive two hours early just so you’re not some late asshole. Which makes sense. The only thing I really did in this room was a shot of heparin—a blood thinner used to prevent blood clots during surgery.
Waiting in this second waiting room did increase my anxiousness somewhat, although then Rachel and I just played our 3DSs for a bit, which as I’ve written about before, video games can have a rather therapeutic effect. Besides that, a friend of mine has a father who is a doctor in the department, and sweet person that he is, he came to check up on me and see how I was doing and to offer reassurances. It was lovely.
Once again, I was called again to go to surgery, although this time I would have to leave Rachel behind. As well as my glasses. Without both I felt very anxious and felt how real this was becoming. As I walked down the hallways with the nurse, unable to even see my surroundings, I felt a sensation of numbness and yet I was shaking inside. This surgery will make me better, I know that. But heck, it’s all pretty scary sounding and it was about to become very real.
I got to a third waiting area, I kid you not. I’m not yet in surgery, and it’s a room with those medical reclining chairs. Again. But now, I was without phone, 3DS, girlfriend, or glasses. But hey, they wouldn’t have called me to this room if my surgery wasn’t in a few minutes right? I’ve decided to be 100% honest in this blog, and while I want to paint a positive picture, I’m also going to talk about stuff I found dumb or stuff that was unfortunate. Anyway, back to my point. I ended up sitting here for about an hour by myself. Someone would come over every now and then to double check that I am me, and that I was getting the correct surgery—which I wholly appreciate. But otherwise, I’m not quite sure why I had to sit in this other waiting room a whole hour by myself with only my anxious mind. This part was awful.
To make matters a little worse, you’ll see on TV about stereotypes sometimes. Doctors can be busy, but are somewhat warm. Nurses are the ones really on the frontline, constantly there for the patient. And surgeons seem a little curt and aloof. Well, my surgeon came out, and looked at me and goes “are you my next patient” to which I replied I was. He then asked if he ever saw me in clinic before (he had) and said he didn’t recognize me or remember me. Then shrugged. And walked off.
I’m not trying to whine or anything. I honestly believe this guy is great at his job, and I’ll jump ahead to a spoiler—my surgery was a resounding success in so far as what was suppose to be done—but that was the least comforting thing to hear. Furthermore, my pain control recommendation was changed five minutes before going into surgery—so I no longer got an epidural. Which again, is fine, but the rushed nature of it left me feeling so very, very anxious.
Not long after both of these encounters, I was walked into the room where my gurney was, and was instructed to lie down. From here, my comfort levels increased. Surrounded by a team, clearly some people here had the job of ensuring I felt comfortable, and while they hooked up my IV, myself, doctors, and nurses were laughing about something or another. It was really comforting.
Before I had left the second waiting room earlier, I looked at Rachel and said half-jokingly I was going to try to sing coming out of my anesthesia. I had been told when I first start to come out of my anesthesia, I won’t remember that part anyway, and it’ll be a little while until I’m somewhat lucid. All the same, I decided I’d try to tell my mind to do that when I wake up. In fact, if all goes well, it would be verses from One Week by Barenaked Ladies. You know:
Chickity China the Chinese chicken You have a drumstick and your brain stops tickin’ Watchin’ X-Files with no lights on We’re dans la maison
Anyway, as I lay on the surgical bed, I thought to myself okay, do that. When you wake up, do that. This is when one person in the room laid the oxygen mask on my face. He said “once the anesthetic starts, you’ll feel a good feeling and then drift off. You’ll close your eyes, blink, and next you’ll be waking up.”
As the drowsiness came on, I felt myself think of good things. My girlfriend, my friends, family, and you know… pizza. The important things in life. I remember my last thought, or rather the last one stored in my memory. I saw a bright light before I went out and thought “a bright white light? Isn’t this a cliche?”
And then I was coming to, waking up slowly. Fortunately, they go over all the things you’ll feel before hand, so here isn’t much of a surprise. Your brain is waking up so slowly, and the first thing I have is hearing. I don’t see quite yet, but I hear all the noises and the nurses around me working on me. I feel all the pain I was told about, and it was pretty painful. My throat is dry, but not quite as painful as expected. I feel nauseated. But here I am.
As my eyes start to flutter, I’m mainly just answering questions slowly, such as “yes, still lots of pain.” Which they would they give more pain medication. And repeatedly I’m asked to rate my pain on a scale of 1-10, when eventually they point out a contradiction from the last time I said it. To which I remember being pretty snarky and replying “I’m having a little difficulty with this subjective likert scale after all the you know, surgery.” This actually got a chuckle, and I felt a little bad about it, especially with how wonderful they were being to me. In fact, they were fantastic. The nurses in the recovery room are pros. And their bedside manor is top notch.
They walked away at one point and one nurse was whispering to another saying I was so delusional when I woke up, I had been singing. Success!
“That was on purpose,” I cried out and explained what I tried to do, and this got more laughs. Apparently, I’m REALLY weird and they were getting a kick out of this.
As my pain started to stabilize, along with the nausea, I was still pretty out of it—and heck, I still feel some effects of the anesthesia days later. In fact, they said it can be weeks for your brain to FULLY wake up, depending upon your circumstance. But as was as lucid as I was going to be that day, and I began to build a rapport with the wonderful nurses on the floor. All of them were clearly doing this job because they cared about what they were doing, and I wanted them to know how much I appreciated that. I know that may seem a little weird to first thing about when coming out of surgery, but my mother was a nurse before she passed. She had been a nurse for almost two decades. And I know some of the pain in the ass patients they experience, and I really didn’t want to be one of them.
Furthermore, I wanted to build a rapport with someone for a selfish reason. In recovery, you can’t have loved ones in there. But coming out of surgery, you feel pretty vulnerable and scared. And talking to these people really put me in a good mind set.
Recovery room is about an hour to two, then you’re suppose to be taken to a room. However, my “bed upstairs” as it was referred to was not yet free. So I would be in here for an extra amount of time.
And that is where I’ll leave off this blog. I’ve written almost 2000 words and I’m dropping. It may not be my best or most concise work, but it’s at least honest. I hope to continue the rest of my adventure in a blog tomorrow.
I went in today for my surgery preparation. Essentially, it is a few hours of appointments and tests to ensure that I’m ready for my surgery—which is tomorrow! Providing nothing shows up on the blood work, I have to be at the hospital for 8:30 AM for a 10:30 AM surgery.
In this entry, I’ll go over a little about the surgery, the preparation, and what I’m told will happen afterwards—which I’m sure after I experience it, I’ll write another entry—or more.
First of all, I’m getting a bowel resection. In this case, I’m having a part of my small bowel removed to eliminate two partial bowel blockages due to scar tissue. The scar tissue developed from my Crohn’s flare-up, and is essentially a final present that it gave me before the inflammation came under control due to Humira. Crohn’s is a bitch, a mean mistress that will find every way to punch you in the gut—or in some cases, permanently damage it.
How the surgery works is simple to explain, but boy am I impressed what doctors can do. What they have to learn to navigate is impressive. They’ll cut open my belly, and they’ll remove the damaged parts of the bowel and bring together the two healthy ends. After that, they seal me back up and send me to recovery.
In reality though, it’s much more than just this. In fact, I had a doctor today ask me how I felt I was getting “major” surgery. I never really thought of it that way, but maybe it’s because I’m minimizing it in my head so it’s less scary.
Today was the prep day, and it was a pretty basic process. I imagine if you live in Newfoundland and Labrador, or even Canada, you’ll have a similar experience—although I’m hoping you’ll never have to! When I got in, I had to register and then I was given a form to fill out my medical history. It’s easy to think you don’t have much wrong with you, but then the questions are phrased “do you have or have you ever had” and it turns out I’ve “ever had” a lot of things. The body is messed up. Or, at least, mine is.
After that, I had about a 30 minute consultation with a nurse who goes over everything for the next day—and I’ll include most of that shortly when I talk about what I expect after the surgery. Today I had to see her, have a chest x ray (that was fortunately done before today, they realized), have blood work, and then see an anesthesiologist. As far as my prep goes, I mainly have to just mentally prepare myself, pack for at least a five day stay, download shows (entirely legally, of course) onto my laptop, and fast starting at midnight.
The rest of the prep appointment went well, and I am extremely pleased with how friendly and helpful everyone was today. As long as the blood work comes back fine, my surgery will go ahead tomorrow. You know, barring any other complications like a freak snowstorm in the middle of April that sees St. John’s having the second most amount of snow in a single day ever. BUT WHAT ARE THE ODDS OF THAT HAPPENING?!
…Well, what are the odds it’ll happen again?
Now, it’s the post-surgery stuff that sounds kind of unfun. By the sounds of it, I’ll be waking up Vader. Eer, rather, I’ll be waking up attached to so many machines and tubes. Let’s start from top to bottom to see if I remember it all. I’ll wake up with a tube up my nose that sucks out stuff from my stomach—yum, yum. There’ll be an IV in my neck, and maybe two in my wrists—one is an IA, but whatever. Technicalities are boring. An epidural in my back—and I’m not even pregnant! I think! I should look into that. And finally, a catheter. Look, I don’t mean to sound like a stereotypical man but “YOU’RE PUTTING WHAT IN THE WHO NOW?” … I wish I could tell you I was more scared of the surgery than a catheter but… I’m DEFINITELY more scared of the catheter.
I’m told I’ll wake up groggy and drugged out. Oh and pain and shit. And plus, the tubes, and the CATHETER makes you feel like you have to pee constantly. So yay?
Anyway, apparently the few days in hospital, especially the first couple is helping you recover. Get your stomach active again. Get you standing. Get you moving. Get the fucking catheter out. Etc. In fact, I’m told the first couple of days I won’t eat at all. So that’s a thing and I’d like to dedicate an entire paragraph to that.
Okay, so not eating for a couple of days isn’t a big deal. But yet, I find myself thinking “man, what should I eat today? I won’t eat again for a while. What tastes do I want? This is so stressful.” And it makes me think how awful it must be to pick your final meal on death row. Note to self: Don’t commit capital offence, don’t murder. Addendum: don’t murder in the United States.
Anyway, back to recovery. Yeah, so there’s a lot of recovering to do in the hospital. I was told the catheter comes out once you can get up and pee and stuff, which makes sense. So I was joking (except not) that this will now be what I singularly dedicate my mind to when I awake. “Oh hi. Gee this pain sucks. Hey Rachel, I love you, thanks for being with me. Hey nurse. Also, get the fuck out of the way, I’m going to the bathroom. WHAT DO YOU MEAN I CAN’T GET UP YET?!”
Am I making too many catheter jokes? ARE YOU GETTING ONE? NO?! Thought so. And if you are, I’m so sorry. But hey, join me in making it a goal to get that out as soon as possible.
I should be out of the hospital within 5 days, which is great news because I’m poor and well live in Newfoundland (Hello Taxes) and can’t afford a private room. So sharing a room with three other people is my idea of an awful time. I barely like sharing my popcorn, let alone a room.
However, the recovery period will continue about 6 weeks afterwards. In fact, for the whole six weeks I’m directed not to lift anything heavier than a milk cartoon. Which makes me feel a little helpless, but also thirsty. Got milk? Not seriously, can I have some? That stuff is really expensive and I’m poor and live in Newfoundland.
But in all reality, I’m so glad to finally be here and to get my life back on track.
I’ll end on this note, the worst news of all. For anyone who knows me or read my blog about loving baths, they are my life blood. They are my prozac. My anti-depressant. My relaxant. My crutch. A bath a day keeps Angry John away and you don’t want to see him—he yells academic-sounding terms really loudly to sound smart and it’s the worst. What a pretentious asshat. So anyway, he likes baths. Eer, I mean, I like baths. And I can’t get a full bath for at least a few weeks after the surgery so anyway, I’ll probably burn down your house or something. No big deal. Is that a capital offence? I’ll have to look into that.
Hahaha. I’m kidding.
Thanks for reading and I hope you’ll join me as I blog about the recovery process next week. I’m so very excited to finally have this progress, to go back to doing all I did before and maybe a few new cool things.
I wrote last year about dividing my life into chapters, and how this extended sickness is the end of my chapter 3. And in February, it was finally confirmed what caused the most recent sickness. In short, I’ve been sick since June 2014. Initially, it was an intense flare-up, which was eventually taken care of by going on Humira. However, scar tissue was left in ravaged areas, causing two partial blocks that need to be removed by surgery. The partial blocks leaves me fatigued, in pain, nauseated, and much more. It’s hard to get your life together when you’re that sick.
So I’ve been waiting on the start on Chapter 4, when things are back in my control. When I could get surgery, and from there, work on my own rehabilitation. Because lying down on and off for practically two years takes away pretty much all your muscle mass, so it’s going to be a difficulty journey to get back to where I was two years ago. But that’s exciting. Because the blocks, I couldn’t control. But this I can. I can take on this new journey.
My surgery is on Friday, April 22. Finally. A date. Finally, an end in sight. On Thursday, I have to go to the hospital for a few hours for tests—so it all starts then.
Thursday, I start to regain control of my life. A journey I’m excited about. A journey that starts with the tests, the surgery, a short rest, putting together resumes and cover letters, applying for new jobs, doing more community and volunteer work. Energy so that I can walk for more than 15 minutes without falling asleep. Energy so that I get my body back into shape. Energy so that I can work and contribute to society. Energy so I can contribute to this beautiful community and province that has given me so much. Energy so that on a Saturday I can decide to do nothing because I’m being lazy and not because I’m sick.
Yes, the surgery is a little scary. The basic anxieties are going through my mind. What if theirs a complication? There’s like the smallest chance you can die from anaesthetic, right? What if my recovery takes much longer? And so on. But right now, they are not at the forefront of my thoughts. Shockingly, they are not weighing too much on my mind. Maybe as the day approaches, it may.
Right now, I’m thinking of all the good things. About chapter 4, and how it may be more exciting than anything I’ve done so far. How chapter 3, I became more than I thought I ever could be. But I’ll make that all look small in the next few years, that’s my promise to myself and to anyone who has ever believed in me.
Chapter 4 starts Thursday. I hope you’ll follow along, and join me on this adventure.
PS: This video is amazing and I was listening to it on repeat while I blogged.
PPS: Thank you to an amazing friend who fixed my laptop for me. Right now, times aren’t easy and having amazing friends who help you out makes it the journey a lot better. The fixed laptop allowed me to write this blog!
Hello and thanks for reading! In case you haven’t read my blog recently, here’s a recap of everything: I’ve been on my third flare up since June 2014, although recently the active illness is gone and I responded to the Humira really well. Yet, I’ve still been really sick, even if I just eat a granola bar and water like I did one day. Turns out I have two partial blockages in my intestines due to scar tissue damage from when the disease was active. And it’s believed that these blockages are causing most symptoms I’m having, including overworking my body and the extreme fatigue. They are scheduling me for surgery soon.
Since my recent journals, I’ve learned a little more about partial blocks in the bowel. For instance, it turns out the fatigue is pretty common with this. But I learned something I didn’t know three weeks ago. It makes it so that you barely absorb nutrients. Not like a little deficit, but in possibly everything.
Think about that, everything I’m putting in my body is making almost no difference to help me out. To give you an example of the importance of nutrients to a normal body, it’s like putting gas into the car. Without gas, you’re going to break down. Now, if you have a chronic illness, your car is already half broken. It’s already looking for a reason to just pull over on the side of the road and just stay there. Fortunately, gas keeps even the worst of cars running sometimes. But with barely any gas, you’re not getting anywhere. Especially when you burn it faster due to the body overworking itself.
So anyway, my slowed body and brain can also be explained by that.
I can’t wait for surgery. I can’t wait until I don’t feel like a slow down car guzzling gas at a ridiculous pace and getting no where.