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.
- 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 On the second or third day when the morphine starts to be withdrawn, you will feel some level of pain in the incision.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.
- 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 vein. They 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.
- 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.