I have been wanting to rant about this for such a long time. 

Note: I never had an ostomy; my surgery was a one-step. That might become a whole other list of things, which I hope to add! I'm happy to edit this list and credit those who contribute. Please also note that I was healthy when I went into the hospital; no cancer yet, but a few adenomatous polyps were nearing cancer.

My mom warned me about almost everything imaginable for the hospital, but I noticed that these things don't come up in conversation when people ask what to expect about the j pouch. What happens in the hospital and recovery thereafter is all an important part of the process, too, so here we go:

 

Before you go to the hospital-- 

  • From Winterberry: stock the fridge and pantry before you leave for each surgery.
    • You'll want food that's high in protein. Frozen vegetables can be turned into a pureed soup, frozen chicken into broth, and put bread in the freezer for peanut butter snacks. Egg, hard cheeses, tofu, pasta, and jar sauces all keep for a time.
    • Stock the pantries before your colonoscopies, too. You'll be on a clear liquid diet.

 

The painful things--

  • Don't laugh, because it will hurt more than you realize. You use a lot of stomach muscles to laugh, and you've got holes carved into yours.
    • In the same vein, stop your sneezes if you can.
    • In the event that you can't stop them, press a pillow into your stomach. It helps a little.
      • Winterberry recommends a hard pillow or even a magazine and emphasizes the need to press firmly to alleviate the pain.

  • Also from Winterberry: when you wake up, you probably won't feel any pain. You'll be very drowsy, your mouth will be parched and your throat may be sore from the tube they put in your airway during the surgery. They will give you ice chips or a special sponge to wet your lips. On the second or third day when the morphine starts to be withdrawn, you will feel some level of pain in the incision.

  • The nurses will make you walk on your first day. They make everyone, even people with leg reconstruction surgeries, walk on their first day. You only need to do a few steps, and getting out of bed is the most painful part of your entire surgery. It only gets better from there.
    • The least painful way to get out of bed: raise the back of the bed up so you don't need to use your stomach muscles to get there. Get your legs over the side of the bed--this is the painful part, so don't stop here--grab your nurse's hand, or your mom's, your dad's, your significant other's, all the hands, grab them, and have them pull you off the bed to a standing position. You'll be able to pull yourself up in no time.
    • To get in the bed: angle the back of the bed--not quite flat, not quite couch. Let's guesstimate ~35-45 degrees. Sit on the edge right along that fold, prop your forearm on the back of the bed, lean into your arm as much as you need to, and kind of roll so your legs get up there. The first couple times, you might need someone to lift your legs for you. Especially if you're, say, 5'1"...
      • Every day, getting in and out of bed gets less painful. I was a pro by day three. I also walked a ridiculous amount. Laps for days.
    • Walk with a buddy at first, or stay in sight of the nurses. My hospital floor was mapped like a lopsided figure-eight, and I thought I could do the longer loop. We learned that there aren't as many nurse sightings on that side, no hospital rooms, and no chairs in the hallway. Luckily, I was walking with my mom, so I stood on my wheelie IV and she pushed. We kept a wheelchair in my room after that, so we'd know where to find one in a pinch.
      • Walking is super important because it will make you pass gas sooner. Basically, the more you walk, the faster you'll get out of the hospital (assuming there are no other complications). This is part of why I think it's best to have your surgery done (especially for my fellow FAP-ers) before you get sick.
      • From Winterberry: walk every hour if humanly possible. On my third day my bowels woke up and gas started to move through my insides. There is no pain suppressant for gas pains. Just know that it will hurt, and it will pass. Ask for warm drinks to help the gas pain. This will soothe you through the gas pain. You just have to bear it and then the gas pain will be gone.  

  • Your skin will heal around your JP (Jackson-Pratt, a drain to pull your body juice out of your abdomen so your organs heal faster). It will get tugged every so often, or you'll lay down and it'll be at an extremely uncomfortable angle. It stings like a paper cut, especially when walking.
    • You can prevent some of the tugging by pinning the JP to the inside of your hospital gown.

  • In the process of being diagnosed (at least with FAP) and having your surgery, you'll be poked by a lot of needles. Let the nurse pick the veinThey know which ones are ripe for the picking. And please, please, please make it easy on them--stay hydrated. Don't drink water the day of your colonoscopy, but do drink water every other time they tell you to fast. Trust me, you're allowed to. 
    • Speaking of colonoscopies: schedule it in the morning. You'll get to eat sooner. Also, when you wake up the morning of, swish water in your mouth. You may not be able to swallow it, but you can at least feel like you're hydrated. 

  • From Winterberry: if your surgeon is doing an epidural, make sure they give you a relaxant first. Winterberry is not a fan of needles (and I wasn't until my surgery, too) and the nurses are receptive to this. You'll already have your IV, so chances are they'll give you the relaxant through it. 

 

What to bring:

  • Bring slippers, not socks, because you won't have to bend down to slip them on when you walk around the hospital. Walking barefoot makes you pretty cold.

  • You can pretty much forget about underwear. Between the catheters (plural because you'll wake up with two: a urinary and a rectal catheter) and the JP, underwear is just a nuisance. 

  • Pack sweats for when you leave the hospital. Especially if they're making you leave with your JP.

  • Also, bring a bath robe! Because hospital gowns are open at the back, and it's easier to get in and out of bed when you leave it untied. Yes, that means your backside is on glorious display. But if you have a robe, it's so much easier to leave it open and sling that baby over your shoulders when you're out and about.

  • Hospitals are usually cold. Bring your own blanket for the bed.

  • From Winterberry: bring your own water bottle and drink as much as humanly possible. 
  • Winterberry: bring a few inexpensive white towels (dollar store or discount stores) to sleep on in case of nighttime inconsistencies, or spread them on the sofa. 
    • White because they're easily bleached clean.

 

SKN69's list of things to bring:

  • warm socks
  • wash cloths
  • body lotion
  • antacids and the occasional tums (for post intubation acid reflux) 
  • breath drops for the post op camel breath and for when brushing your teeth isn't an option
  • favorite pillow 
  • air freshener/essential oils/perfume to remove that awful hospital smell
  • soft kleenex 
  • favorite toilet paper (it gets awfully scratchy otherwise)
  • heating pad for the lower back (microwaveable)
  • ear plugs for that noisy neighbor
  • eye mask 
  • flip-flops for the shower (foot fungus is rampant in hospitals), which also double as slippers. (they don't slip as much as slipper do...less risk of falling)
  • bathrobe! 
  • towels if they don't supply them
  • dry shampoo 
  • used to bring books, but now tablets do the job just fine. Do not forget your power cords

 

Advice for Ostomies:

  • Lambiepie: Practice changing your bag before you go home! 

  • Lambiepie: Bring mini binder clips for the bottom of the bag. This ensures that the bottom opening will NEVER accidentally open and spill the bag contents.

  • Winterberry: After my takedown, the nurse put a commode next to my bed in case I couldn't reach the bathroom in time. You can always ask for one so you don't have an accident, especially if your sphincter muscles can't hold tight yet.
    • A commode is a potty set in a chair; the char has wheels. I was grateful for it, especially when I was still hooked up to the IV and morphine pump. 



All that other stuff:

  • You fast for the surgery for, what, three days? You'll be on a liquid diet for one or two more days in the hospital. So the first time you get to order a meal, get something light and eat only as much as you want. Your appetite will come back, I promise, but your stomach won't be ready to handle full meals right away. Don't let your loved ones pressure you, or that'll end up with you bent--very, very painfully--over the toilet.

  • Do your Kegels! The Kegel exercise is super easy to do and it's great for when you're lying in bed and you can't focus on a book, the TV, your games, or what have you. You'll thank your Kegels when you don't have any (or, at the very least, fewer) leaks.

  • A lot of hospitals have a lady who comes to wash hair a couple days every week! Talk to your nurse's station about that. You usually need to sign up for her to find you. People bring service dogs to visit patients, too.

  • Advice from Lambiepie: accept any and every piece of help from anyone, especially your friends and family--don't be afraid to ask for help.

  • And finally: you will absolutely lose your dignity. The good news is that it's only temporary.

 

Does anyone else have something to add, or a bone to pick with my list? Every experience is different, but I want this to be as relevant as possible so people have a good idea of what to expect.

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Leah, your list is really good, so very specific and helpful. Thanks for giving us a window into your experience, complete with photos! Yes, a good sense of humor, lots of walking (which, you are correct, is hard at first but will become addictive in the hospital) and the dignity thing, oh yeah, help you move forward. You brought back a lot of memories for me. The only thing I can think to add to your list is to accept any and every piece of help from anyone, especially your friends and family - don't be afraid to ask. I hate asking and this was particularly hard for me but I got better at it. 

Lambiepie posted:

Leah, your list is really good, so very specific and helpful. Thanks for giving us a window into your experience, complete with photos! Yes, a good sense of humor, lots of walking (which, you are correct, is hard at first but will become addictive in the hospital) and the dignity thing, oh yeah, help you move forward. You brought back a lot of memories for me. The only thing I can think to add to your list is to accept any and every piece of help from anyone, especially your friends and family - don't be afraid to ask. I hate asking and this was particularly hard for me but I got better at it. 

Lambiepie,

I'm happy to share, and I hope it helps at least a couple preparing people. I didn't think to talk about accepting help because I typically don't have a lot of problems on that front, but that is absolutely wonderful advice and so very important to every hospital stay. Thank you!

I may or may not have snooped on your profile and noticed that you had the stoma for a while. Would you like to make a list of advice for people who don't go straight into the j pouch? I'd love to turn this into a master post of sorts, for people preparing for the hospital and their loved ones. I think that, comparatively, my time in the hospital was a breeze, and I contribute that entirely to my knowledge of what to expect. 

Hello all. 

It is a very good look into a hospital stay.  

I had no idea when I started and I had four different hospital stays at more than two weeks a peice.  

Walking.  Yes.  I didn't do it.  I lost all self worth and my third stay.  Well.  It was the worst and no way could I get up and do that.  Looking back if I had to do it over again I would have gave my wife a whip to get the me out of bed.  Serious. 

Walking should be at the top of the list.  It's extremely important and something I blew off and shouldn't have.  I paid the price for not doing more.  It was a painful price I didn't expect.  Mentally and physically. 

Walk.  Walk. Walk. 

Richard. 

I have an ongoing shopping list of things that I bring with me...some very useful and some "just in case" that I take but almost never use...unless I forget them and then need them

Warm socks (my feet get cold post-op), wash cloths, body lotion, antacids (post intubation I get acid reflux and the occasional tums does wonders (can't wait 24hr to get an order from the doctor), breath drops for the post op camel breath when I can't brush my teeth...my favorite pillow (neck!), air freshener or essential oils or perfume to remove that awful hospital smell! Some soft kleenex for your nose and your favorite toilet paper too (it gets awfully scratchy otherwise)

Nail polish and remover (I hate my toes post op...its just my thing) and it is great exercise trying to reach them. A heating pad for the lower back (microwaveable), ear plugs for that noisy neighbour and an eye mask.

By now I have moved my whole bedroom into my hospital room.

Flip-flops to wear into the shower (foot fungus is rampant in hospitals and I have enough problems in life) that double as slippers. (they don't slip as much as slipper do...less risk of falling)

Yes, that bathrobe! Towels if they don't supply them.

Walking and deep breathing are essential, they help with your lungs as well as your abs...

Unless you have a real guardian angel in your world to wash your hair for you, bring dry shampoo...I always end up staying 6-8 days post op, way too long to go without washing it (and it feels so good to get it washed...makes me feel human again) so dry shampoo is my savior.

I used to bring books but now tablets do the job just fine...do not forget your power cords...

That's all for now...will probably think of 800 other things at 3am...but...

Sharon

Truthfully, I don't know if my list would be all that different. Four surgeries, all different, but so much of the advice applies to them all. Just don't need soft toilet paper with an ostomy ;-)  Lots of contact with an ostomy nurse before leaving the hospital and practice emptying and changing the bag. Also, mini binder clips for the bottom of the bag will ensure that the bottom opening will NEVER accidentally open and spill the bag contents.

I agree with Sharon about earplugs - mine were a lifesaver. I get sensorily overwhelmed easily in the hospital and they blocked a lot out for me. Plus, at night, a Percocet and earplugs allowed me some good sleep. Also a microbead pillow for behind the head or the belly...the beads contour to the body.

This post is very useful I'm scheduled for my first surgery on 10/25 and I'm having a lot of anxiety about the un known. It's helpful to read what to expect when waking from the surgeries to at least get an idea. My surgeon told me they will be placing a epidural before my surgery and it's staying put for five days while I'm in the hospital. Has anyone had a epidural placed  ? Do they hurt? 

Hello, BBE. For my first surgery I had an epidural put in my back, inserted alongside my spine. It did not hurt when they inserted it because they gave me a relaxant a few minutes ahead of time so I would not feel the epidural going in, and so that I would be relaxed and not tense. I hate needles and told them in advance. I already had my IV in my arm so they administered the relaxer that way. But before the relaxer, they had me sit on the edge of my bed and lean over a podium type of structure that they put in front of me. This was to expose my entire back and spine to give them easy access, rather than lying on my side in bed. They gave me the drowsy drug (probably Ativan) and that's all I remember. They inserted the epidural while I was drowsy and I did not feel a thing. A few minutes later I was lying down and being wheeled into the operating room and was fully awake until they put me fully under. The needle stayed taped to my back for three days (I did not feel it at all, even when I was lying on my back). They removed it at day three and left me with the morphine pump for the rest of my stay.

Other things to know: When you wake up, you probably won't feel any pain. You'll be very drowsy, your mouth will be parched and your throat may be sore from the tube they put in your airway during the surgery. They will give you ice chips or a special sponge to wet your lips. On the second or third day when the morphine starts to be withdrawn, you will feel some level of pain in the incision. As others have said already, when you need to sneeze or cough, you must brace your abdomen with a hard pillow, or even a book or magazine, and press FIRMLY AGAINST your stomach when you sneeze, cough. I kept a magazine close by for bracing. I didn't find a soft pillow any use at all for bracing. It's got to be something hard enough to press onto your stomach. If you don't brace and a cough or sneeze escapes you, be prepared your abdomen and incision area will hurt. A lot. No way to get around that or sugar coat it. So remember to brace.

Bring your own water bottle and drink as much as humanly possible. Walk every hour if humanly possible. On my third day my bowels woke up and gas started to move through my insides. There is no pain suppressant for gas pains. Just know that it will hurt, and it will pass. Ask for warm drinks to help the gas pain. This will soothe you through the gas pain. You just have to bear it and then the gas pain will be gone. 

Bring slippers. Never set foot on a hospital floor in your bare feet. Enough said.

As soon as you are allowed, take a hot shower if facilities are available in hospital. A sponge bath does not feel the same. You will be messy from surgery, and after a few days of sponge bath and a catheter you will beg for a hot shower. My first hot shower and shampoo in hospital felt like a million dollars. Felt human again, despite being hooked up with morphine, the little drain pouch, and I don't know what else. Just remember each day gets better, each day another tube or drain is removed until you are free of machines and lines, you are eating food, and then you are going home!

Good luck.

Almost forgot. Could I add that stocking up your fridge and pantry before you leave for each surgery will give you good, nutritious food when you come home. Stock up with good high protein food so that your tissues and wounds can begin the healing process as soon as you get home. Frozen vegetables can be turned into a puréed soup, frozen chicken into broth, put bread in the freezer for peanut butter snacks. Egg, hard cheeses, tofu, pasta and jar sauces all keep for a time.

Also, after my takedown, the nurse put a commode next to my bed in case I could not reach the bathroom in time. You can always ask for one so you don't have an accident especially if your sphincter muscles can't hold tight yet. (A commode is a potty set in a chair; the chair has wheels. I was grateful for it especially when I was still hooked up to the IV and morphine pump. A commode meant I didn't have to ring for a nurse to unplug my morphine. Sometimes you can't wait!)

Stock up on a few inexpensive white towels (Dollar Store or discount stores) to sleep on in case of nighttime incontinence, or spread on the sofa. White towels because they be easily bleached clean.

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