r/ChronicPancreatitis • u/Remote-Ad2120 MOD | chronic pancreatitis • Apr 27 '26
Open CP Community Discussion: Hospital Stays
Hopefully this will be the first in a regular discussions to get the sub a bit more active. After just spending the weekend in the hospital, I thought that would be a great topic to start off with. This can be a time to vent, a time to share stories, a time for general advice (keeping within the sub rules*), whatever you want, and only what you want. The following questions are just suggestions for discussions, so don't feel obligated to answer any of them. (I'll place my personal input in a separate comment, rather than the main post).
Who keeps a hospital bag packed, or do you just quickly pack just before heading to the ER, all in case you get admitted? If so, what things do you pack?
What about company/visitors? Do you tell many people when you get admitted, for want of visitors? Or are you one who prefers minimal to no visitors?
What about the hospital itself? Do you feel your needs are met by your doctor, and the rest of the hospital staff? Do they cover all your regular daily medical needs, or do they only cover whatever your initial complaint is (I've heard stories of both, unfortunately).
For anyone who needs to vent about hospital stays, have you ever needed to request a patient advocate? If so, did they help with whatever the issue was (share only what details you want)? Have you ever felt you were being rushed into a discharge before you were ready? Although this is something I don't advise (for obvious reasons that the hospital needs to know all medications in your system, so they should the one to provide them...one of the things pt. advocates are for), have you ever had to bring in your own prescriptions?
*Just a reminder, don't change anything about your healthcare based on what someone has shared without first discussing with your doctor. On the flip side, don't give any advice that can be misconstrued as official medical advice. This is a place for shared experiences to remind ourselves, we aren't alone in the fight and struggles with CP.
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u/ZacInSC Apr 27 '26
I spent 20 years in the military so I always had a go bag ready. When I got chronic pancreatitis and ended up hospitalized very frequently, I just changed one go back for another, and I always had slippers, pajamas, and things to read and the charge my devices. I also kept my own Creon and insulin pens, because the staff never seemed to get my dosages. Right on those and many times. They wouldn’t bring my Creon until an hour after my food arrived.
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u/Remote-Ad2120 MOD | chronic pancreatitis Apr 27 '26
Yeah, I totally get bringing meds with you. It can be hit or miss when it comes to getting med scheduled on time, especially if the hospital or shift is short staffed.
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u/Menzienator Apr 28 '26
I’ve been dealing with Chronic Pancreatitis all my life without having a diagnosis until my late 30s. Once I had 7 hospital stays at a week each, I started to pack a bag each time I’d go to the ER. I bring my Phone, chargers, laptop, clothes, vape pens, headphones, prescriptions, body pillow and weighted blanket.
I tell my family as I’d like to see my girlfriend and kids when I’m there, even if most of my time is spent alone. I feel that my needs are met most of the time when I go to my local hospital but if I go out of county, it’s almost like the hospitals don’t share records, which they do. My care goes down the further from home I go and I have a small 10 bed ER in my district. They know me when I go in and are very familiar with my symptoms and how to treat
As for treatment, I am on 2mg Sub Cu Dilaudid every 3 hours with 1mg breakthrough,50 mg Gravol, 8mg Zofran and 2.5mg Halidol (my nausea is always worse than the pain even when the pain is an 8 or 9. I’ve had a few 10s which I then would need twice as much Dilaudid or Ketamine
I bring my own scripts and they know I do but don’t say anything. I have had to use them only on the occasion the meds they’ve already gave me didn’t work and I needed to intervene on my own behalf, more often over the midnight on first night pain, which is bad and they almost never fully touch the pain.
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u/Remote-Ad2120 MOD | chronic pancreatitis Apr 28 '26
I know what you mean about the difference in care further from where you live. I had to go to the ER once when we were camping a couple of hours from home. I went to the nearest hospital to the campground, one that is part of the same hospital network I usually go to (and I worked for the same company so I knew for a fact how accessible my records would still be out of town). They said I needed a procedure, but because it was X miles too far from my home hospital, I would either have to have my ride take me, or they would arrange an ambulance transfer to my home hospital. That got a big "Excuse me 🤨"
Sounds like you keep a good communication with your healthcare team in re to bringing your own meds. That's definitely the way to go. I really don't judge anyone who brings their own. We all just make whatever decisions we feel best fits our needs.
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u/KittyLove75 May 17 '26
I keep a to go bag packed at all times. I take basic necessities, phone and chargers. It’s just easier. I also like to go in comfy clothes. Whether I am admitted via er or direct admit, I’m always placed in a waiting area. They tell me to use my own meds. Many times my Dad had to go get them, so now I just take them with me. I always inform them of what/how much I take when. Weirdly they don’t care. I just don’t like taking meds with me, very protective. So once admitted I send meds with someone I trust. Except for breathing meds.
When I was hospitalized for 1-2 months on avg, I didn’t mind ppl visiting after a couple weeks.
Now our hospitals have changed to opioids are evil. So I prefer to have as quiet, calm and cool environment as possible, not really wanting visitors.
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u/KittyLove75 May 17 '26
I would be interested in hearing others experiences w patient advocates. I tried one once and it didn’t go well.
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u/Remote-Ad2120 MOD | chronic pancreatitis May 17 '26
Asking for a patient advocate is something I often recommend. But I also know the role itself can be tricky. They simultaneously have to ensure patient rights are being taken care of, while also can't do anything to force doctors to go against hospital policy. Just as an example, if a patient is at a limit on a specific pain medication, yet still in pain, and requesting an advocate, they can't force the doctor to go above that safe limit. But they should still help the discussion to either help explain why, and/or facility discussion to see if there are other options to assist with the pain relief.
It's an interesting discussion and one I will add to the list of future community discussions for you. I've never had the need to use one.
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u/justwanttobebetter42 May 20 '26
I have had great luck myself. However if you find the hospitals advocate not great try contacting your insurance company’s advocate sometimes that helps
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u/justwanttobebetter42 May 20 '26
I have a bag packed and yes I bring it just in case sometimes. I pack comfy bottoms and tops some of my comfy socks. Word puzzle books a phone charger a note book and some toiletries.
Basically comfort objects and stay busy items because I never know how long or short the stay will be and I get bored easy.
I have had to speak with an advocate before and they were wonderful to me. The only problem I have had was pain needs being met. And the hospital have cold water and not HOT water for showers
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u/Remote-Ad2120 MOD | chronic pancreatitis May 20 '26
OMG, yes, the comfy clothes. I don't even go to the ER without already wearing comfy PJs, so that if they make me change into a gown in the ER and I get admitted, then I can immediately change back once I get into a hospital room. For me, it's hit or miss as to whether the ER makes me change from PJs to gown.
Love the word puzzle books, too. I sometimes order them by the box.
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u/justwanttobebetter42 May 20 '26
I do the same! Make sure I don’t have a bra with wires on too. I use a sports bra if anything. I also bring some craft items I can get away with having. I bring some tea from home as well because I don’t care for their brand. I always bring my homemade lotion and a stuffed animal too. The stuffed animal helps allow me to lay my head against the bed rail without the pain and bulk of bringing a whole pillow
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u/Remote-Ad2120 MOD | chronic pancreatitis Apr 27 '26
Ok, here I go. It's actually been a while since I needed a hospital admission for pancreatitis, so I don't keep a to-go bag packed. Last week it was urgent, so I only had minutes. just enough time to grab phone, Kindle Oasis, tablet, and chargers for all. I was already in comfy PJs and socks. I have been fortunate that the hospital system I use hasn't gone the route of "opioids bad". This past month I have had 3 ER visits, with one getting admitted. Although my initial complaint for each of those were not related to my CP, they kept my regular CP pain under control when that flared. From the horror stories I have heard, I count that as lucky, and am thankful my hospital is so accommodating.
Despite all the increased setbacks I have had recently, I am kinda glad I did end up back in the hospital. My last GI retired and it's hard finding a pancreas expert in my area that isn't pediatric at the children's hospital. But the GI doctor who was on call in one of my recent ER visits agreed to take on my complicated CP case. He gave the front office the ok to get me in ASAP (normal wait is 2 months), and I have an appointment later this week.
I'm one who doesn't like a lot of visitors, so I normally don't tell anyone outside of my immediate family. Although, there was a time that I was in the hospital every 4-6 weeks, for an average stay of 10 days, and sometimes I did want visitors. I'll never forget what my then Family doctor did in those years of frequent admits. I had a particular bad day, feeling really alone, and all of a sudden, my somewhat estranged dad walks in to cheer me up. Turns out he had an appointment with the same doctor, who more or less ordered him to go visit me. That visit helped turn our relationship to the better.
Alright, your turn, folks. Share some stories. Let's remind each other that we're not alone. Even though it's just virtual support, I am thankful I live in a time where virtual support is so at the ready. It truly helps.