Urgent Help Needed: Early Postoperative Discharge - Advice Required!

Hi everybody, I hope you are keeping warm, safe, and well. We have a situation here, and I may need some help in a hurry, please. Let me give you some background.

Last week my brother's partner was taken into the hospital for urgent surgery. She was weak already: the operation took six hours and she needed 16 units of blood after a near-fatal hemorrhage. She had a hysterectomy as expected: they found a large tumor, the cancer had spread to the intestine, so she had (we guess) a Hartmann's procedure, leaving her with a stoma.

The tide of the COVID-19 epidemic is rapidly rising here. She is in a rapidly filling urban hospital 200 miles from her home, having had the op three days ago. We think it is extremely likely that she will be discharged home very much earlier than normal, simply because her chances of survival may be better at home than in the hospital. Nursing support once home is likely to be very stretched – she lives in an isolated area. She is likely to be on opiate painkillers for the post-operative pain, not good for establishing and settling a stoma. Guys, this is going to be a mess!

She has two advantages on her side: (1) she has my brother caring for her, a level-headed retired social worker but not medically trained. (2) she has me: I've been through the sudden arrival of a stoma after emergency surgery stuff, though obviously not the other bit. I'm locked-down in another country, but that's life. And I ... have you!

Dear friends, please help us if we need it. I know this community is no substitute for a doctor and can't give medical advice. But I'd like to help my brother when questions come up 'is this normal?', 'do we need to watch this?', 'do we need professional help now?' I might even put a photo on my page and ask for opinions – not of us are squeamish any longer, are we?! Starting for now, as he prepares to drive her home (120 min journey!) possibly tomorrow or the day after (5 days post-op), what does he need to know/consider/get? Foods to start to build her up? (She is vegetarian!) Bed protection? Anything else apart from the obvious?

Sorry to press the panic button, but we could be dealing with life-and-death here. We may need all the support we can get. Thank you! Chris

Hi Chris, when I had my surgery my doctor said I needed to go into a nursing home for a couple of weeks for rehabilitation. That way, my insurance paid. I know with this virus they may not be accepting people. But if her doctor recommends it, that may help. Best wishes.

Hi, thank you. There isn't the slightest chance this could happen, I'm afraid. There are none available in that remote mountain area, and they are likely, in any case, to become foci of infection themselves within a week or two.

Chris, good for you for bringing this to us for help. Just to clarify, you are in France, but they are not, right? Are they in the US? (Votre anglais est parfait - you're not French?) I wouldn't worry too much about the pain meds affecting getting used to a new stoma. Most of us would have had that experience too. As long as she knows how to change her appliance before she leaves the hospital, she is probably no worse off than the rest of us were. With regard to food, I would suggest she (and your brother) try to speak with a dietitian before leaving the hospital. That would provide her with the best advice. Next, she would want to connect with an ostomy nurse - is there a community ostomy nurse who makes house calls? She will probably be fine once she gets home, but anytime something is even slightly different than what she expects happens, she will be concerned. That is where your experience comes in! She is lucky to have the wealth of your knowledge and experience to guide her through the first few months, and she will have you on speed dial!

She would also be advised to check out all the YouTube videos on anything ostomy related. When I was new to this, I got a lot of information from YouTube. There is a special place in heaven, I am convinced, for people who share their ostomy experiences on YouTube!

Chris, do you know yet the status of the cancer? Was the spread confined to the intestine? Will she need chemo and radiation? You may not have all of these answers yet. Please let us know as things unfold, and I am confident that this compassionate community will do whatever we can to support you and your belle soeur. Keep asking questions. Good luck.

Laurie

Hi Chris!

We'll be here for you, so just ask away! Things to get for the drive home? Is she on solid foods yet? If not, I'd say just something minimal to eat while she's in the car on the way home... some crackers, a banana, maybe a small yogurt... easy to digest stuff just for the ride. Before they leave the hospital, have them ask for a couple of those clear plastic urinals (with lids), so if her bag fills up or she needs to empty it for any reason, it can be done while driving. I'd also bring a towel or three just in case something goes wrong. Some car cloth interiors are very hard to clean. Also, make sure the hospital gives her enough ostomy supplies to last her at least a couple of weeks under worst-case conditions. Seems with this virus crap, the ostomy supply companies will stay open and delivery services will as well... but who knows? So I'd make sure she leaves with a good supply of everything she'll need.

They should also feed her accordingly before she's picked up, knowing she's going to be in a car for two hours or so... and make sure to get a supply of any meds she's currently on... that will last for a few days until they can get prescriptions filled. And lastly... make sure they have contact info for any of the folks she may need to contact (physician-related) once she's home. I find it's easier to get all that info while you are there and looking people in the eye as you ask than to deal with the voicemail nightmare most doctors and hospitals have running their phone lines. Hope that helps.

Regards,

Bob

Yeah Chris, you do have us. As you probably learned already there are tons of quality information and advice from the folks here. Most of us have gone through or been very close to situations similar to your brother’s and his partner’s. More importantly, the folks here are wise, experienced, compassionate and want to share with those in need. Not too different from you. Medical services wordwide will be scarce for folks like us now but we’ll handle your situation. No need to panic.
The more specific your questions could be the better our offerings will be.
Let’s get this lady well quickly.
Mike

Hey Chris,

We will be right here. You may want to suggest that she join the site as well. I have had both a hysterectomy and ostomy but not at the same time. I did have my ostomy and Barbie butt at the same time, so that was pretty rough. I think Bob covered the necessities of the trip and few weeks at home. Bring her a pillow as well. She can hug it if the road is bumpy, and that will help. She will need lots of rest. All I wanted was sleep. I was not hungry after surgery, but my husband took good care of me and brought me food every meal. Her stoma won't be putting out much, and the opiates will help contribute to that. It will be very difficult for her to get out of bed to go to the bathroom, especially if she had both surgeries through her abdomen. Not sure if she will have a Foley catheter for her bladder too. As much as I hated a Foley, I appreciated not needing to get up after surgery.
I hope she recovers quickly, and I am sure she is grateful to have you for all her ostomy questions.

Puppyluv

Thank you - all good stuff - really practical! No news yet on what will happen and when, but I know I have you behind me, which is what I needed at this point!

More news when I get it, but thanks again! Chris

Hello Chris.

Sorry to hear about your brothers wife. It seems that you have already had a lot of good advice and useful information and there will, of course be as much suppport as we can give on this site. However, I notice that you have not yet told us what country your brother and his wife are in. This 'might' be important in relation to the advice people can give about services available.

Best wishes

Bill

Hi Bill, thank you - a very fair point! They are in the UK, Welsh borders.

Are they in Snowdonia? You had mentioned mountains earlier. If they are in Wales, the good news is that relatives in Merseyside tell me that they tried to ride out the pandemic in their caravan in North Wales, but all non-locals were sent home. That makes sense. Healthcare facilities are built based on the local population, and an influx of tourists could easily overwhelm local facilities. The other good news is the good universal healthcare system in the UK. There will be problems, of course, during this pandemic, but a universal system is built to cover everyone, not just those who can pay. So your sister-in-law may face some delays in care, especially home care, but she should still expect care. I echo what Bob said, make sure she has lots of ostomy supplies before she leaves the hospital. If you recall when you were new at this, you probably went through more supplies early on than you do now. That is to be expected when learning a new skill.

I would expect that there will be some treatment of the cancer. There may not be a need for radiation, since the tumor and surrounding tissue have already been removed. I would expect, though, some months of chemo, to ensure that any stray cancer cells are clobbered before they get any grand ideas. The type and duration of chemo will depend on what pathology finds, and what her cancer stage is ultimately deemed to be. And she will probably have 5 or so years of cancer surveillance, which is a good thing. Blood testing for CEA levels every 3 - 6 months, CT scan every year, and possibly other diagnostics as well. She may not have to always travel to the hospital where her surgery was performed; often chemo and surveillance can be handled by smaller facilities, under the direction of the original cancer team at the larger facility.

Good luck, Chris. Keep us posted, please.

Like all the good people said, before me on this thread, we are all here to help. I hope she has a speedy recovery with few complications. Karen

Hello Chris. Well! it doesn't take much thinking about to say that if I had to be ill, there is no place I would rather be than the Welsh borders. We spent some wonderful weeks in the Brecon beacons last yearand probably would have gone again this year if it hadn't been for this virus. That said, those first few weeks and months are not a time whan we can appreciate the great outdoors to its fullest extent.  However, as has already been said, we have a great NHS and caring medical teams who will no-doubt look after her to the best of their ability. Also the people down that way are very helpful and friendly, so I'm sure she will get lots of support if she needs it. 

I hope all goes well.

Best wishes

Bill

Hi again, Chris. My cousins in Carmarthenshire tell me that the hot spots in Wales at the moment are Newport and the surrounding valleys, and Cardiff is also affected. But they also point out that even in less affected areas, there is lots of preparatory activity going on in case things get worse. So, lots of stadia, training buildings, etc., are being turned into field hospitals that will be ready when or if they're needed. So, it looks as though if your sister-in-law isn't in the southeast part of Wales, things might not be as hectic as you fear. Hope that's helpful.

Thank you for all the helpful comments so far.

We now think she will be discharged from the hospital tomorrow (Wednesday), so five days after the operation, subject to a blood test. The plan seems very unclear, but they are talking of bringing her back home by ambulance, rather than my brother doing the 400-mile round trip to go and get her. This may change if an ambulance can't be spared. He has been unable to have any real phone conversation with her, he has spoken each day to a nurse who seems to be unable to answer any technical questions like the type of kit she needs. He has had one conversation with a doctor, the surgeon who did the op.

It seems to me that this is our great NHS bracing itself for an incoming tsunami of infection, making unenviable clinical judgments about whether a seriously ill patient would be safer at home than in their hospital, the longer they are there, the higher the risk of the patient contracting the virus - whereas she might already have it and bring it home to possibly kill her and/or her carer. No health service is built to handle these kinds of stresses. Everybody is doing their best in a nightmare situation.

If you do, please pray! Chris

Gosh - I have cousins in Carmarthen too: Do you think we are related?! Memo to the rest of you reading this - Welsh family humour!

I think we will feel she is much safer away from Stoke-on-Trent before the tsunami really hits there.

Hi Chris, I will be praying for her and also your brother. I know this is a very upsetting time for everyone. Please keep us updated.

Thank you: your prayers and your care mean a lot to me.   C

I suggest a couple of hospital bed pads. I have two in case one is in Mount Laundry. She will have enough challenges considering an early discharge. Laundry doesn't have to be one of them. I hope she does well as it is better for her to be home.

Thank you - we're ahead of you on that thought! That's what comes of having been here myself...........

Good morning all!

All went quiet for the last few days as my brother's partner was kept in the hospital for longer because the stoma took a long time to work. After some silliness over the means of getting her home (Taxi at midnight? I think not!), Patient Transport dropped her off at home yesterday. In view of the fairly high chance she may have encountered Covid-19 in the hospital, she is now in total isolation for fourteen days. My brother has moved back to his house, but will deliver food etc.

So it's bad - but it could be a lot worse: I plan to chat with her this morning. I'll keep you posted: your comments on here have helped already, so thank you.

Hi ChrisP, thanks for the update. I know these 14 days are going to be very hard for her. I just hope she was shown how to take care of the stoma, also empty the bag. I will keep praying for her and your brother. Stay safe.

Hi Chris,

Slip her your laptop under the door after you've logged in here and we can all say hello! Just don't forget to wipe it down when she slides it back. If you don't have a laptop, tell her we're all pulling for her!!!

Regards,

Bob

Chris,

Glad she is finally home. I am sure she is much happier there, even in isolation. Certainly more comfortable. It is sad that she has no one there for her. Those first few weeks are tough in a normal environment!

Hopefully you can get her signed up for this site so we can talk her through anything she needs. She is lucky she has you and your brother.

Puppyluv

Hey Chris, hope everything is going well for your sister-in-law. I've been thinking about her and wondering how she is doing.