It goes without saying that at some point, if you have IBD or a related autoimmune disease, you will likely be hospitalized; some more than others. This is why I always travel to the ER with my at-the-ready overnight bag, because you never really know when an admission will be needed. Everyone’s “necessities” may be different, but below is a list of what I usually keep in my bag:
Toilet paper & Cottonelle wipes (the hospital grade TP is murder on my poor bum)
Earplugs (helpful for blocking out noisy IV pumps and possible snoring roommates)
Sleeping mask to block out light from the corridors
Cell phone charger
Loose, comfortable clothing with open necklines to allow for access to my port (tanks with built in shelf bras, yoga pants, etc.)
Socks and a robe
Heating pad (they hardly ever have them in the hospital anymore, and I’m spoiled by my awesome infrared model, so “Sparky” comes with me)
If you are in the hospital often enough (hopefully not), you may also want to invest in a couple of your own hospital gowns. Not those horrid ones with bad prints that all hospitals have, of course. I have always been a fan of Diane Von Furstenberg and have a couple of her wrap dresses. For an upcoming surgery, my husband did a little research, and it turns out that she designed a line of hospital gowns for the Cleveland Clinic in Ohio. As I was having my surgery out west where we lived, he wrote them and asked if they could send me one or two. Lo and behold, about two weeks later a package arrived in the mail for me. I had no idea and when I opened the box to find two DVF designed wrap dress hospital gowns, I cried I was so happy. This disease can often make you feel like you have lost a part of your identity, and this was a small way of getting some of that back. I wear them each time I’m in the hospital now and the nurses always complement me on them. There are other companies that design ones with fun prints and things like that; it’s still a hospital gown of course, but I feel just a little more like me. And any morale boost you can get is a good one. Kudos to The Mr. for tracking that down for me….he’s a good egg.
Once admitted to the hospital, you may find that in a place designed to give you rest, it’s often difficult to come by. There will be staff checking on you at least every couple of hours, wanting vitals, taking blood, administering medications…then there is the constant checking in from well-meaning family members and friends, calling and emailing to check and see how you are feeling, possibly visitors and/or a roommate…
Obviously, you control the things you can and deal with the ones you can’t. The roommate situation is usually a given, though in the hospital now closest to our home, they have mostly private rooms which is AWESOME. If a shared room is a given, you don’t get your pick of roommates, and normally not much can be done about it. I once awoke in the middle of the night only to find the sweet, older lady who was my roommate stabbing at me with her cane, calling me a whore because I wouldn’t marry her son. That was awkward. They stepped her down on her painkillers a bit so she didn’t hallucinate anymore, but I was stuck with her for the duration of my stay. The earplugs and sleeping mask can help with this a bit, as with the light and noise that can come from the corridors even late at night.
Calls and visitors are more of a personal preference. I usually turn my ringer off and have my husband funnel calls and inquiries for me until I am ready to talk. My husband will visit every day, but even then I try to keep his visits limited to an hour or two. I know it must be hard for him to feel helpless as I lay there, and honestly, I can rest easier when I’m left alone. He understands that now after spending an entire night in my hospital room with me when we were on our honeymoon in Kauai. The staff there were so amazing, as soon as they found out we had just gotten married, they pulled out a cot for him in my room (which was private) and offered to get him dinner. He slept curled up on that cot for as long as he could that night, given the frequent checks on vitals, the IV bags that needed to be changed at 2am and the 4am blood draw. After that night, he gets it, and no longer feels kicked to the curb when I tell him it’s time to go. Unless I am in for a really long time, I ask all other visitors to wait and come see me when I am home. I don’t think anyone likes to feel as though they have to entertain when they are feeling awful, and not looking much better either.
And finally, if you find yourself in a situation where you know that you are going to be hospitalized in advance (say, for a surgery, etc), please do try my preferred “Surgery Prep”, in addition to the awful ones the doctor will give you to drink the day before to clean your system out and ensure you are ready for anesthesia. My prep is far more pleasant than that:
The manicure and pedicure will keep your hands and feet looking nice since you’ll be staring at them a lot anyway, and the massage will help to alleviate any pre-surgery anxiety and stress. Just make sure you do those things before drinking the nasty stuff that the doctor gave you, otherwise you will be a fountain of bodily functions and unable to fully enjoy this part of your “prep”!
Additionally, if you happen to be going in for “takedown” surgery (aka, the removal of the ileostomy), do yourself a favor and bring a tube of Ilex, one of Calmoseptine (both of which have links on the Resources page) and some kind of bland food that will be easy for your belly to digest, like Ritz crackers. There’s nothing worse than having to stomach bad hospital food when you’re already nauseous (as going NPO and pain meds can sometimes do to me). Ritz crackers are easy on the belly for a soft foods/bland diet, and if you supplement them with some Ensure, you can get some basic nutrition and get your GI system functioning while avoiding the grey green beans and soggy meatloaf.
In the meantime, I’ll locate a couple links for custom hospital gowns and put them up on the Resources page as well, in case you’re interested.
Have a great weekend!!!