Loop Ileostomy

I had my ileostomy twelve days ago, and it wasn’t exactly what I thought it would be.  I haven’t been able to blog at all because I’ve been stuck on the couch (or in bed) and I wasn’t feeling well enough to sit up at a computer for longer than two to three minutes.  Tonight Master let me borrow his laptop because I’m kind of getting behind on blogging everything.  I can use it on the couch much easier so I can actually blog.  Woot!

bracelets

The surgery morning went okay.  I did all the things I was supposed to, and Master got me around noon so we could get to the hospital.  The night before, the anesthesiologist called me (which is pretty common) and gave me all the instructions she wanted me to have.  One of the things she told me to do was to tell them that I needed a little pink pill the second I got in the door.  She was very specific about this with me, and she went over it with me several times to make sure I understood.  She wanted me to have this little pink pill so much that she told me that if they didn’t give it to me immediately that I was to have them page her.  She even told me that they might try to give me a yellow pill.

“DO NOT TAKE THE YELLOW PILL.  WAIT FOR ME.”  Ha ha.

So of course, I told the very first person who checked me in.  That person told me that was a nurse issue and that I’d have to wait.

“No.  She was very specific.  Page her.”  I got a funny look, and they tried to call her cell (not page her) and then told me she wasn’t responding so I’d have to wait.  Mmmhmmm.  This repeated at admissions.  This also repeated with the nurses.  They wouldn’t let anyone come back while I was getting prepared (which is not typical, and which pissed me off) and they acted like they had no clue what I was talking about.

My nurse came in, and she said that she had pills for me, but that she’d have to wait because the doses didn’t look right to her.

::Sigh::

So we weren’t off to a great start, and I didn’t want the anesthesiologist to be mad at me.  I tried though, and at some point, there’s really nothing else you can do.  It turned out that my medicine orders got cancelled by accident, but the anesthesiologist was proud of me for asking anyway!

I was really bummed to hear that my port wouldn’t be good enough for the surgery.  Yes, they were going to use it, but they also needed another line.  They like to have two lines in the OR for this kind of surgery.  Lordy.

Let me tell you, they did not get that second line.  They tried three times before I went to the OR, and they tried one more time once I was put under.  I woke up with a massive bruise on my left hand, and a giant bandage on it.  I guess they didn’t get their second line.  They wound up putting a chicken’s foot in my central line (which is just an extra couple connections) and that was that.  I’m still bruised from all their pokes.  I have a port for a reason, you guys.  If I was an easy stick I would not have a port.

The anesthesiologist was very, very nice though.  She had sort of a “Mom” vibe to her.  She was with me the whole time and she was always looking out for me.  It was nice.  She even gave me a liter and a half of fluid before they took me back to surgery because she was worried about my two days worth of bowel prep.  Yay!  My heart rate was through the roof because I was so freaking dehydrated, but it came down once I got some fluids.  She was really concerned about my neck due to my Ehlers-Danlos Syndrome and she had one person in the room whose only job was to make sure that she never moved my neck while putting the breathing tube in or taking it out.

The pre-op room was kind of a mess.  There was a nurse whose only job was to get my info into the computer.  A nurse who was constantly trying to get a line other than my port.  My ostomy nurse showed up at some point, as did my surgeon, and there were a bunch of assistants.  When the ostomy nurse came, it was a little awkward.  She wanted to know if I had any questions, etc, but I was too shy to ask certain things in front of about a million bajillion nurses.  Plus, everyone was trying to get info out of me.  It all felt very rushed even though I arrived on time.

So, I was marked for surgery, and the nurse didn’t have me try on pants before she marked me or anything.  I didn’t know she was supposed to until after I woke up.  It’s so low on my stomach, but it’s not quite low enough that any of my pants or panties fit.  They would rest right on top of the stoma which is a big no-no.  So right now I’m having to wear only skirts and dresses and skirts have to be set at a somewhat awkward angle.  Not only that, but I don’t have enough clothes at all now so I’m slowly saving up to replenish my wardrobe.  It’s annoying.  I wasn’t aware at the time that you’re supposed to mark for the stoma while wearing pants, but it’s too late now.  Gob sits where Gob sits.

We went back to the surgery room, and I don’t remember a whole lot.  Right away, when they positioned me on the table (which they let me do myself due to my Ehlers-Danlos Syndrome) I was starting to feel my neck and shoulders go very hot.  It was a weird sensation.  I’ve experienced it a couple of times before when Dilaudid gets put in my line.  I’ve never had a surgery where they didn’t use Dilaudid on me.  Now, I’m not allergic to Dilaudid or anything, and I don’t have an issue receiving it.  I just wasn’t expecting it yet, so I yelped a bit because it’s a strong sensation that comes on suddenly.  The anesthesiologist said:

“It wasn’t me!  I haven’t put anything in her line, yet!”

Yes you did, sweetie pie.  I guarantee you did because I was woken up all night for Dilauded shots in my port and I had the same sensation.  I don’t mind at all, but if you warn me, I won’t yelp.

The rest of the thing was pretty uneventful for me, because the anesthesiologist put me to sleep and I woke up a few hours later in recovery.

“Are you having any pain, honey?”

“Not really.”

“Wha..  Are you sure?”

“Yeah.  My ablation was a lot more painful.  I guess I’d rate my pain a three.”

“You don’t need any pain medicine?”

“I’m okay.”

Alright!  And, she popped a piece of gum in my mouth (weird, but okay!) and wheeled me to my room where I met my nurse.

I don’t remember a damned thing about that nurse.  She got me started on liquid food (broth, jello, etc) and let me ring the buzzer for help whenever I wanted.  I started ringing it around 8PM, which was the only time I wanted pain medicine that night.  She didn’t come in the room though, an aide did (aides can help you go to the bathroom). I was on a lot of drugs, and I thought she was my nurse.  The aide asked what I needed.

“My belly hurts.”

“Have you walked yet?”

“NO!”

“It’s gas pain.  You need to walk.”

“What?  This is not gas pain.  This is surgery pain.  I just had surgery.”

“We walk a lot in this hospital.”

And she got me a special walker, and made me stand up and start walking down the hall.  Then she went and brought me back to my room where she put a couple of heating pads on my stomach (I totally understand her trying to help.  She can’t get drugs, but in retrospect, a heating pad on your stomach right after surgery seems a bad idea.)  I was also told by my doctor not to walk for twenty-four hours but since I was so out of it, I thought that changed and if there is one thing I will never do, it’s fight with my nurse. If I thought she was an aide, I might have fought her a bit.) A couple hours later, I rang the bell for pain meds again, and when the aide came back in I said to her “I need medicine.”  Ha ha.  She left and got my nurse.

I never saw the night nurse again during my stay, but she was very nice.  She kept waking me up all night for pain medicine.  She’d ask me to rate my pain and I would say two or three and she’d tell me she didn’t want to get behind so she was going to put Dilaudid in my line anyway.  It’s bizarre how many pain medicines I get pushed on me when I’m not in any pain.  Dilaudid makes you sleepy too though, so I didn’t really care.  Wake me up every two hours, take vitals, go back to sleep.

hospital

The next morning, my doctor appeared in the dark, and asked how I felt.  I told her I was okay.  She told me I needed to stay another day and not to worry, to just go back to sleep.  So, I did.  She looked at my stoma, and I looked down and finally realized I had an appliance on me.  It was this weird magical moment where I thought “THE SPIRITS DID IT ALL IN ONE NIGHT!” and also “OMG, I CAN POO NOW!”  I was elated that it worked.  Not that I didn’t think it would work, but i was just so pleased that it did.

About an hour later, some Dr. Dickface came to my room.  Dr. Dickface is the floor doctor, not my personal doctor.  He went in there and acted all excited.  It wasn’t even sunup and he turned on all my lights to the brightest setting and was really fucking loud.  I had a rough night.  I didn’t want this tool in there with me.

“YAY!  You get to go home today!  Aren’t you excited?!”

“What?!  No.  No I am not excited.”

“Don’t you WANT to go home?”

“Not yet!  Of course not!”

“WHY?”

“I’m still in quite a bit of pain and…”

He cut me off.  “OF COURSE YOU ARE IN PAIN!  You just had surgery.  You’re going home today.”

“I also still have my catheter in.  And I haven’t learned how to change my ostomy bag.”

“Fine.  You can stay today.”

And he left, pissy as fuck.  I’ve never had anyone come wake me up that way and be so fucking unconcerned about my health.  Um.  WTF?

The morning nurse was really nice.  I had her both days I was there.  She was always my day nurse.  The following morning, I was in a lot more pain.  I kept calling it a 5-6.  It never got above a six, and I found that the narcotics weren’t helping me at all.  The only thing that was helping me was Toridol.  Toridol is an anti-inflammatory shot that you get in your IV line.  It’s not a pill, so you can’t take it when you get home.  As bizarre as this sounds, my day nurse was constantly “trying to wean you off of the Toridol using narcotics.”  Ha ha.  It was bizarre.  So, she started giving me narcotics in between Toridol shots (you can combine them) and we were hoping that my pain would get controlled from the narcotics.  By the time I was released (too soon) my pain was not under control at all, and I was pretty miserable.

There was the heparin shots.  My nice day nurse came in and asked me where I wanted my heparin.  I’ve only ever had heparin in my port, so I said “My port.”  I guess it can’t go in my port.  I needed to have it somewhere else.  Preferably my stomach or my arms.  I said my arms.  The first shot went in my arms and it didn’t hurt at all.  I hate shots, but that one was fine.  The second time (what?!) I needed one she asked if she could go in my tummy.  “It’ll hurt less.”  “It didn’t hurt at all in my arm.”  “I’ll go far away from your incisions.”  “OK.”  That was awful.  I cried like a freaking baby.  Do not like.  I still have the bruises from all my heparin shots.  The gave me several, and woke me up several times in the night to give me them, too.

potassium

I was on constant potassium IV fluids which was actually really awesome.  I didn’t have to drink any Pedialyte and I got to drink all the tea I wanted too.  Actually, I drank sooo much stuff when I had my catheter in (on purpose).  After all, if I don’t have to get up to piss every two seconds, why not take advantage?  All the nurses were so sweet.  “You really like your tea, don’t you?”  Yes, I do!  They were always bringing me tea and stuff.  It was so nice.

My night nurse on the second night was incredibly sweet as well.  He woke me up on time for my drugs and heparin (I fucking hate heparin shots!) and was really funny, etc.  I found that every nurse I had on this whole inpatient experience was really great.  The only person I did not like was Dr. Dickface.

Dr. Dickface made another appearance the next morning, and it was even worse.  After blasting the lights again (and showing up a full hour earlier than the previous day) he came in and yelled.

“You’re LEAVING TODAY.”

“There’s no way.  I can barely walk, and I still have no idea how to change my ostomy bag.  And my pain is still unmanaged.”

“I’ll send PT in to work with you, I’ll send the ostomy nurse in to show you how to change your bag.  Then, you’re leaving.”

And he left.

PT was nice, but it was clear I couldn’t leave without a walker.  We bought one on the way home.

My ostomy nurse was also nice but she was completely shocked I was leaving that day.  “Most people stay at least three to four days!”  I know, but I’m being kicked out.  So.  I don’t know.  Maybe he’s jealous of Applepig.  Who knows.  She didn’t really tell me anything about how to change my bag.  She did mention that you always need to put a barrier ring down on the skin because the output from Gob is very caustic and would cause damage if there were any leaks.  That’s all though.  She spent about fifteen minutes with me, and I was on heavy narcotics at the time.

A doggie visited me!  His name was Snickers and he was the sweetest Golden Retriever.  That really cheered me up.  I loved every friggin’ second with the dog.

Master came by to pick me up around 1PM, and I spent the day laying in bed and weeping on and off because my pain was getting worse (up to a seven at times) and I didn’t have anything to help control it.  I will say though, that my nurse was really sympathetic and gave me one last Toridol shot about ten minutes before discharge.

The entire hospital experience aside from Dr. Dickface was really great.  Everyone was really trying to help me, I felt.  I have no clue at all why I was discharged so quickly, because I did everything I was told, etc and didn’t argue with anyone (okay, aside from Dr. Dickface), but for whatever reason, I was.  I have a feeling it was my Medicare, but I can’t prove it.

That’s what my hospital stay was like.  I’ll go ahead and update with another post about my post hospital journey to the current day soon.

Mew!