How do I plan for a hospital stay?

[DebE13]

I have to get all my shopping in this weekend since I'm unsure of how long I may be laid up. Tuesday is my surgery day and its considered out patient as it's a 23 hour stay. (The insurance game is ridiculous). Assuming I have no calcium issues I should be home Wednesday evening. It's a short stay but I will have to eat. The more I think about it, the more panicked I get because even though I haven't had an appetite, I know it's unlikely I can just wait until I get home. I've never been able to skip eating without having a big impact on how I feel. I am not accustomed to anyone preparing my meals now and I never trust anyone when they tell me it's safe.

I've gone over my health history what seems to be a million times but no one finds it to be a big deal except me. The PA who did my pre-op exam just shook her head when I told her I only eat meat, veggies, limited fruits and nuts. I couldn't tell if it was disapproving in nature or she understood how difficult it is. My medical notes list the gluten, soy, dairy, and egg sensitivity as "resulting in GI upset." I realize the computer notes need to be short and tidy but I wanted to object and add in a few more descriptors so whoever was reading my chart would understand that it's not just a little tummy ache.

I'm assuming I will get jello- afraid to eat and what's the nutritional value anyway, chicken broth-afraid to eat because I don't know what's on the label, MSG or soy? Hopefully coffee, but I'm not sure on that. I use silk chocolate almond milk as my creamer since I don't like coffee black but the in-the-box kind has carrageenan. The refrigerated kind doesn't, was disappointed. Rice- afraid to eat because was it made in water alone or a broth that possibly contains soy? Potatoes- afraid to eat because are they real or instant? The instant kind can have other stuff. Everything I could think of had questions that went with it and I'm sure if I ask the nurse, she won't know either. Big sigh. I didn't realize how much evaluation of foods I do in a day.

Do I just say screw it, it's just for a day and up my entocort? But I am trying to get off my entocort. Although I don't agree with that theory either because I've finally learned how stupid it is or me put something into my body that I know could cause a potential upset, it's not worth it. Once is one time too many and I already feel unwell, why knowingly add to it? I don't want to be stubborn but I'd like some piece of mind since there's a potential it could turn into a few night's stay since calcium issues are not uncommon.

I already have packed some applesauce that I know is ok as long as I don't eat too many of them. I thought of packing a banana too. I'm not sure they will even allow food to be brought in but I don't plan on asking. My concern is getting my protien. Am I worrying too much?

Also, I may not have time to ring a nurse if I need to go. I'm assuming with the anesthesia my bowels will be slowed down and I most likely won have any issues but since when has my body ever been cooperative with me? I read that they usually have a nurse in he bathroom with you in case you pass out. The last thing I want is a witness to my poop follies. I know it's their job, won't care, have seen worse but it's on my mind. Maybe at that time I won't care either. Even on the entocort I have D and go 4-6 times in the morning and there is nothing quiet about it either. The entocort at 3mg every other day keeps me from having issues at night while I'm sleeping and controls the gurgle noises.

Maybe now is the time to strictly limit my diet to just turkey and rice only for every meal for the next couple weeks. Then maybe I could find out which foods i am still eating are causing offense. I haven't had the willpower to commit to that yet. Although, I'm already stressed so maybe keeping things status quo for now would be better. Can't make up my mind.

[maestraz]

Hi Deb,
First of all, I want to tell you that a close friend of mine had thyroid cancer some years ago and is doing very well. I'm sure all will go well for you.

If I were you, I'd make sure to touch base with the involved doctors on Monday and tell them how anxious you are about the food issues, and how greatly it could impact your recovery. I'd make it clear that you can't *not* eat over 23 hours, and that the results of eating bad things will cause your body distress. There has to be a hospital dietician that you can consult with on Monday as well.

Let me assure you that my sister is a nurse and there is *nothing* that fazes her. I understand your anxiety about that, too. We all fear humiliation. Maybe you could ask the nurse to just stand right outside the door, IDK. Hospitals have policies to protect themselves, and the nurse might not be able to deviate from that.

I'd be fretting about all the same stuff, believe me. I might be inclined to up the Entocort to 6mg evry other day and re-taper after. I'm sure others will comment on that.

I hope to hear that most of the things you were anxious about did not happen.

[tex]

Deb,

Are you sure that you will be able to eat the first day after surgery on your throat? Most hospital food comes from food service in a quick-and-easy-to-prepare version. Very little is prepared from scratch in the hospital kitchen, and that characteristic cuts down the options for some of us, rather drastically.

During my hospital stays, after I made it clear that I had multiple food sensitivities, the doctor made arrangements for the hospital nutritionist to visit my room and we discussed possible options that might work for me. Breakfast was the toughest for me because the only eggs served were scrambled, but since they were preprocessed, the nutritionist wasn't even sure what might be in them, and didn't trust them for someone in my situation. They didn't offer bacon, because they consider it too unhealthy, donchaknow. They had coffee, milk, fruit, or fruit juices, none of which I could handle at the time. For the other meals, plain baked chicken breast and rice worked for me. Once or twice they had broccoli. Like the airlines, they tend to push salads for people who have multiple food sensitivities, but of course salads are not an option for most of us.

Regarding jello — I once lived on jello, Seven-Up, Sprite, and water for 2 weeks, between tests, so that I wouldn't have to go through the cleanout process again. I don't recommend it, because I was hide and bones at the end of the 2 weeks, I developed hiccups that wouldn't stop, and my strategy didn't work, anyway. The doctor's sergeant-at-arms, who was disguised as a nurse, did a great impersonation of Attila the Hun, and insisted that I had to go through the cleanout anyway. The point is, you can sorta get by on jello if you have to, but it's not a great long-term diet, that's for sure.

Don't even think about using those tiny bags of condiments that they bring you with meals, unless you have a magnifying glass to read the miniscule print used for the ingredient list. Reading them is good for a laugh though, if you have some time to kill. I found that most of them contained every food sensitivity ever invented.

I agree with Suze — I doubt that any nurse would be phased by your bathroom "performance", but if she is, then it would probably be good training for her. If they pump you full of antibiotics, your bowels may be more docile during your hospital stay, because they will probably be in a state of shock for a while, due to the drastic changes in your routine. If something happens, don't sweat it — that's what nurses are for — to clean up messes. Most of them have seen sick people before.

Trust me, modesty is greatly overrated. If you hang out in a hospital long enough, you don't give a rat's ass what anyone thinks about your behavior — you just want to get back home, where you can relax and get some sleep.

Tex

[DebE13]

Thanks Suze,

I've been hearing that a lot which keeps me hopeful yet the stories I keep reading aren't so rosey. The cancer may be managed but the on-going problems with regulating the hormones is what has me worried. Story after story repeats many months or even years of feeling run down and that makes my heart sink. I already have that and was hoping the total removal would be a new chance to get myself back into the land of the living. Although, I know from experience, I am reading stories of just a few people in the big picture of thyroid management and like here, the forum is a good place to vent and get ideas from like people. I am overly sensitive today so that's a big part of it. I must say, coming back here is like coming home. I've learned a ton in the past month but the people here seem so upbeat. Not to put any other group down but even when we vent it seems to still end on a positive note. Maybe that's the world of those who have to put up with so much sh** on a daily basis. Pun intended.

The more I think about it the more I realize that this is a very short time in the big picture of life so I shouldn't be so focused on it- it will come and go.

I might be better to take a break from all the Internet reading but I can't seem to stop myself. I don't have the energy right now to do much more than sit on the couch so it keeps me busy. This is my favorite time of year and had most of my vacation planned for sept and oct. I'd better stop now before I go into another pity party. Haha.

I should know better than to get to wrapped up in all of the possible what if's because usually it turns out to be something totally different that will happen. Thanks for all the kind words.

[brandy]

Hi Deb,

My best friend is the head dietician at Shands/UF. She has about 40 junior dieticians working under her. At Shands/UF if a patient comes in with extreme food sensitivities they prefer that the patient bring a cooler of food with them. Up until about two years ago Shands/UF prepared their own foods in house. About two years ago the food service was contracted out to Morrisons. Under the Morrisons regime a lot is prepared kind of foods and they seem to run a "just in time" inventory, i.e. don't have much extra sitting around in the kitchen.

I'd talk to your medical professionals in advance, bring some food and maybe have your husband bring a little cooler over. Use the term extreme food allergies when talking to the medical professionals. Use the term "inflammatory bowel disease"/ diarreah 20 times/day etc. Over exaggerate if you have to.

The dieticians will have familiarity with patients with extreme food allergies. About two weeks ago my girlfriend had a patient that only ate about 8 foods, Shands/UF accommodated the best that they could, my girl friend even drove out to the health food store to buy a certain flavor of Lara bar for this patient but my girlfriend said the patient's friends brought in the other 7 foods that the patient could eat and at Shands/UF they are ok with the patient bringing a cooler of foods for those patients with extreme food sensitivities.

Brandy

[brandy]

Hi Deb,

They always seem to want to push saltines and gingerale any time I have outpatient surgery when I come into recovery. Perhaps give the nurses some GF bread to hold for you for the recovery stage. I just remember feeling loopy coming out of anesthesia and getting the saltine stuff pushed on me.

Brandy

[brandy]

Hi Deb,

Tex's jello and gingerale plan sounds like another good option. Brandy

[DebE13]

Tex,

You're right. No solid food right away but even the liquids concern me. Maybe just water to start. That would be awful to go through the jello deal and end up having to do the clean out anyway. I have my third next year and just thinking about makes me shiver. i had bad reactions last time. The PA told me there would be routine antibiotics and we had a discussion about them in which I would be SOL because it was one on the MC not-so-friendly list. I talked with the surgeon 20 minutest later and he said there would be no antibiotics used, not for a thyroidectomy anyway. We talked about pain meds too and he mentioned Tylenol or Vicodin.

I know sedation is different than anesthesia but if its anything like my two colonoscopies, I will be out for the night. I must be sensitive to it because the year my husband, son , and I all had a colonoscopy I was the only one that didn't remember the ride home and slept til the next morning. They both were up and around like normal shortly after coming home. It actually sounds appealing right now because I can't remember the last time I got a good night's sleep. I'm sure it won't be as wonderful as I'm imagining it to be since after all it is a hospital and I will be poked often to monitor my calcium.

I have to be there at eleven and was told surgery would be a couple hours after that. It's a 1 1/2 to 4 hour surgery depending on what they find so most the day will be done anyway. Only bad part is it adds to the not eating part. Nothing to eat after midnight Monday but I generally try not to eat after 6pm because it seems to help with keeping things quiet til the morning. I still wake in the morning by my D instead of my alarm so I don't think I will change that. I will have o just suck it up since it's only one day.

Hey Brandy, I already have a little stockpile of ok mushy foods to take with. I suppose it would be a good idea to pack a little cooler. The hospital is an hour away so last minute ideas won't work. I think I will do that just to be safe. The worst that could happen is I don't eat the hamburger and rice on ice.

I will be sure to have a chat with the nurses- the GF bread is a good idea since saltines are out of the question. I can't do ginger ale either, too sweet and gives me a stomach ache.

I had knee surgery when I was younger (football injury, haha) and I remember throwing up in recovery. I hope that isn't a trend. I can only imagine how comfortable that would be. Maybe I should rethink the pain meds. Tylenol has never done much for me so I don't see the sense in taking it. Guess I will cross that bridge when I get to it.

[Leah]

A cooler is a grand idea! hope everything goes well.

leah

[Gloria]

When I was in the hospital overnight a few years ago, DH brought my dinner to me. The hospital is only 10-15 minutes from my home, however. I agree that a cooler would be the best idea. You might bring two ice packs: one to keep in the freezer (if they let you) and to replace the other one when it defrosts.

Gloria

[DebE13]

Thanks for all the suggestions and good humor! I am comfortable with the MC issues because I know my body and most likely how it will react. This is uncharted territory for me so I suppose I'm stressing more than I should. Must be the perfectionist in me wanting to have everything in order and a plan of action.

Back to one of my favorite mantras- Let go and let God

[JFR]

Deb,

I've always liked this quote from the Dalai Lama:

“If a problem is fixable, if a situation is such that you can do something about it, then there is no need to worry. If it's not fixable, then there is no help in worrying. There is no benefit in worrying whatsoever.”

Seems you have tried to plan for all things that are fixable and now letting go is the best tactic, since you can never plan for everything. Here's another quote from another Buddhist:

Do not encumber your mind with useless thoughts. What good does it do to brood on the past or anticipate the future? Remain in the simplicity of the present moment. – Dilgo Khyentse Rinpoche

I wish you well in your surgery.

Jean

[DebE13]

Thanks Jean, good quotes. I am going to add them to my list of favorites. It's nice to have gentle reminders to read and focus on in the midst of attempted organized chaos.

[JeanIrene]

Deb, I had my throidectomy years ago. Things have changed a lot, I know. I had an IV drip the first day, did not eat any food until the second or third day, just liquids. I was not hungry at all, just wanted to sleep. They kept me pretty drugged up the first couple of days.

Try not to get uptight--difficult, I know. I will be praying all will be well Tuesday.

Jean

[DebE13]

Thanks Jean, the prayers ar welcome. It's been the longest 23 days ever. The waiting is a bugger but now the time is short and I'm sure today will go fast with wrapping up odds n ends at work and home.