Hi everyone, I'm new here and facing my first surgery to remove the colon and construct the Pouch in November after 15 years with UC. I am doing as much research as I can to prepare myself for what's to come. The question I have is what should I pack in my hospital bag? What did you find helpful, what did you wish you had brought, what kind of clothing did you wear home, etc.?
Thanks!
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Hello, Erika. I packed as if I were heading to the deepest jungles in the remotest parts of the planet. Which was silly, but it was nerves. Here is what I did end up using, and I learned to do better for the reversal packing.
Long-sleeved cotton t shirt to wear under the hospital gown because hospital rooms can be very cold at 1:30am and there are no maintenance staff to turn up the room's heat. You can ask the nurse for a heated blanket too, if available. Socks to wear in bed. I didn't bother bringing PJs because hospital gowns work best when doctors, nurses and residents examine the bag, wound, and stoma many times a day.
Rubber slippers to wear in your room and into the shower. I brought along good supportive ones (not cheap beach flip flops) to help me when walking the halls after surgery. They went into the laundry when I got home.
Facecloth, because hospital wash-cloths are like sandpaper after being bleached 1,000 times. Toothbrush and cup, and mouthwash. Soap or cleanser in lotion form is easier to handle; you won't be able to bend over to pick up dropped bar soap in the hospital shower, don't ask how I know this. Travel sized shampoo. Face moisturizer or tiny pot of Vaseline because skin will dry out, I don't know why. Everything should be travel size.
Ipad and charger to keep connected. Or not. My hospital roommate was on her cellphone all the time, she was very loud. I rented a hospital TV and it came with earplugs. One book to read, although to be honest, I was so exhausted I didn't read a lot. Any medication you usually take. Eyeglasses (name and phone number inside the case) and contact lens and solution.
Unbreakable water bottle. I kept mine within reach. Stay hydrated. They might give you ice chips at first.
I wore the same outfit to and from hospital: loose, pull on clothes, not jeans. When you leave hospital you'll have an external bag and some discomfort to deal with so loose pull on pants will be so comfortable. Shoes or boots you can just step in to. I fit everything into a large tote bag.
Try not to worry. Trust your surgeon. Make a list of questions to ask at your pre-admission meeting where they give you instructions. Will you have an epidural? I did and it helped manage pain, along with morphine. When they give you the anaesthesia just relax and know that when you wake up you will be disease free and have a new life. And we'll be here to help then too.
Thank you WINTERBERRY. I am a nervous wreck as I have two little boys to take care of but I am out of other options. So, to calm my nerves I am trying to focus on preparation.
Hi Erika. I've been in and out of the hospital as of late, so here are a list of items I usually bring with me.
I live alone, so I end up traveling very light and fit everything into a small roller suitcase. Winterberry has a lot of good advice. The only advice I can give is that if you have long hair (even for semi-short hair as well), I recommend braiding your hair before going into surgery so it doesn't go everywhere when you wake up. Also, the days after the surgery, it's difficult deal with the hair with the IV in the arm depending where it is place, so it may be difficult to put it up after the surgery. Even for smaller procedures like the pouchoscopy, I ended up french braiding my hair because your hair will yank and tug when they ask you to move around from bed.
I wish you the best of luck. Trust your surgeon and his team. I second Winterberry on asking about pain management as well because I ended up not being on any pain medication when I awoke from my first surgery (and the anesthesiologist had gone home too!). You will feel better than you ever have.
-Rina
Thank you for your response Rina! I hope you are right about me feeling better than I ever have. I've been doing this since I was 15 and despite it being hard, it's all I've known so I'm anxious about the uncharted territory ahead.
A lot of stress comes from asking all these "what if" scenarios, and it's only going to scare yourself out of your pants. The unknown is scary because it's a big leap of faith. There are many aspects after the surgery that you will not be able to control. For some, it goes smoothly. For others, a myriad of problems. Whatever your outcome is, it's important to face problems one by one because it can be overwhelming after surgery. Also, do not be afraid to ask questions whether it be here on the forums, the ostomy nurse, or your surgeon.
It's normal to be anxious before something life-changing. I hope some of the research you are doing now can assuage some of your fears. It will be a new beginning. Sure it's scary, but for me, after going through all the surgeries for my pouch, the grass is certainly greener on this side of the fence.
-Rina
Great advice from above 
here are a few things I also took...
1. Robe
2. Power strip to plug stuff in
3. Extra portable charger
4. iPad or laptop for Netflix or Hulu (if hospital has wifi)
5. A small bag that can be attached to the bed rail (I used a make up bag from "31 bags" that had a clip on it. I kept the TV remote, tissues, chapstick, pen, earbuds... anything small I didn't want to get "lost".
If having a 1 step surgery, I recommend:
6. Depends... silhouette "fit"... they are very discreet and thin. I still use them to this day (almost 4 months post op, but I still have an occassional accident (it is getting MUCH better)..
You will be so glad you had this surgery done! I had megacolon and it was literally killing me.. 2 1/2 years it has been growing inside me and literally taking me down.... this surgery has been amazing for me!
5. A small bag that can be attached to the bed rail (I used a make up bag from "31 bags" that had a clip on it. I kept the TV remote, tissues, chapstick, pen, earbuds... anything small I didn't want to get "lost".
That's such a great idea. I have a Thirty One hanging jewelry organizer that would probably be so useful for that purpose. Thanks!
I'll add things as I remember them. A friend told me to breathe and keep my lungs filled with oxygen, and flex my feet often when lying in the hospital bed. It will help blow flood - like in an airplane when you don't want blood pooling in your legs during long haul flights. You'll be lying down for at least 12+ hours from anaesthesia to groggy wake up. You'll know how deeply to breath because your incision will tell you that's enough.
You'll also feel the strong urge to cough to clear your lungs. You won't be able to stop the cough reflex. It's your body trying to clear the congestion from your lungs. Coughing will hurt. I'm not trying to scare you; this is a just a fact. When you feel the urge to cough, sneeze, laugh, hiccup, take hold of a book or magazine and brace your stomach. Really press the hard book against your stomach as you cough. The nurses will teach you this but they will hand you a soft pillow. A pillow won't help much. You need a hard surface for bracing your incision. Bring along a book and keep within reach. Or press your palms, hard, on your incision to brace it. They will also teach you how to rise and ease out of bed with as little pain as possible. They want you up and walking as soon as possible.
Ask for the epidural in advance so that when you wake up you won't feel any pain. That, and the morphine IV will keep you comfortable for at least three days until they remove it and allow your bowels to wake up. My peer patient told me the third day will be the hardest of all, and if I got past that I would be okay. I didn't ask what that meant. Until my third day: that's when they remove the pain management and you might be given Tylenol extra strength or something else. This isn't to scare you. Just to prepare you. I wish I had known this, I would have been better prepared for it. It will hurt without morphine but remember each day it will hurt a little less, and another tube or drain or catheter will come out. You'll be mobile without being tethered to an IV pole and tiny drain pouch! Ask for anti-nausea medication if you feel like vomiting. They do not want you to vomit and damage your new incision. Keep a notebook with questions as they come to you and ask your ostomy nurse/surgeon.
Set up and stock your kitchen and cupboards soon with everything you'll need. Cook and freeze casseroles so that when you get home cooking will involve defrosting a casserole and heating it. My family wrapped small portion meals in foil and froze them (chicken with potatoes and herbs, spices; fish and soft peeled vegetables.). Easy. For the kids too. You will need to eat soft foods, low fiber, low residue, protein and nutrient-dense foods to heal your tissues. You won't be able to lift anything heavy, including the kids! When you are ready for your reversal surgery, you will know what to do. Let go of the fear and anxiety. It's out of your hands now. Your surgical team will take care of you.
Thank you, I appreciate that so much. I am the type of person who wants to know every detail! I asked my surgeon about the epidural and he told me he usually only uses that for people who have open surgery. He said since I am having laparoscopic/robotic surgery he doesn't feel it would be worth the risk so no epidural for me I guess.
I had laparoscopic/robotic surgeries with no epidural. Recovery was not bad at all from my three surgeries. I wore sweats for the first surgery. The other two were in the summer so I think I wore a comfortable dress and flip flops to the hospital. I did bring a robe with me but just used the hospital socks with the grippers on the bottom for walking the halls. It just depends on what you're comfortable with.
In addition to the good suggestions others have posted, I also brought a pillow because the hospital pillows made my neck hurt. It was also comforting to have my own. After the surgery I lived on my iPad and books. Best of luck to you--I'm two years since takedown and feel like I've gotten a second chance at life!
Some of my favorite music was very welcome. A sleep mask because it seems as though hospital rooms are always brightly illuminated! Instead of a robe I used two hospital gowns. One with the opening in the back and the top one with the opening in the front. Small notebook/pen/pencil to write questions in between your doctor's visits. They may laugh at this but it really helps. Best wishes!
My number 1 "must not forget" for any surgery is Chloroseptic throat spray for the post throat intubation irritation and cough...
Everyone else has it pretty much covered...perfect lists.
I also take baby wipes, earplugs, a very comfy pillow and a perfume or scented spray for the odours that will me.
Good luck and don't sweat the small stuff.
Sharon
After so many hospital stays I lost count I bring nothing except my phone and iPad and some extra underwear
