Hand hold while I wait for ambulance for daughter

[StopTheQtipWhenTheresResistance]

Currently waiting for an ambulance for my daughter. Been sent as category 3. She's not been right for a few days now, not eating, not drinking, just laying slumped on her bed. This morning she collapsed in the bathroom and went really pale.

She has a learning disability and complex mental health problems so she can't tell me what is wrong as she doesn't verbally communicate when she feels unwell.

She was in hospital a couple of weeks back due to an infection (see previous threads) so I hope it's nothing to do with that.

I'm so worried, I feel sick.

It's been one of those days of constant phone calls. I'm not at the hospital today as her dad is with her but I'm going up tomorrow.

The consultant came round this morning while my daughter's carer was with her and they basically wanted to send her home, despite her still not having had a bowel movement, still not eating and still not drinking. The LD Liaison nurse thinks that's a ridiculous suggestion and was planning on speaking to the consultant this afternoon. I am waiting for her phone call.

Daughter is in good spirits, has had a wash this morning and sat on the toilet but didn't do anything. She is smiling and happily watching TV.

Her eyes are very blood shot though. I've attached a zoomed in photo to see what everyone thinks, so it doesn't make her identifiable. It's a bit blurry but can still see the red. This is on both eyes. Is it anything to worry about?

This is a good idea. I am going to go through PALS again as this is now a second and different consultant that is trying to send her home with blocked up bowels.

She is ok with having enemas as she is fairly used to them. They gave her one last night but it hasn't had any success. She's due another one this evening.

@StopTheQtipWhenTheresResistance , it looks like subconjunctival haemorrhage, which can be caused by straining to go to the loo, as I understand it.

Edit: I don't think it is serious, and generally clears up in a couple of weeks

@PostItInABook

Great post ❤️

Had an update from the LD Liaison nurse who had managed to speak to the consultant who wanted to send my daughter home.

The LD nurse was assertive and basically said (in professional terms) that sending her home was ridiculous. The doctor agreed and said she would review the bowel X-ray tomorrow. Apparently she hadn't even looked at it which is hugely concerning.

I've been doing some research and I'm going to suggest water irrigation if it is something they can do at this hospital.

Been reading scary stories about people with learning disabilities dying from this sort of thing so I really hope they manage to clear her bowels out soon.

I hope your daughter was comfortable overnight op x

Hope today is a better day for your daughter and you all, and you start to see some progress.

I’m pleased the LD nurse has been useful. Hopefully today will be a better day for you all

Still ongoing, daily treatment with Macrogol. It you do go down this road I found one form was much easier for my DC to tolerate. My youngest especially has a lot of sensory issues around food and mediation.
My GP said it needs to be treated for around a year for long term constipation as the bowel has been stretched out of shape and it needs to be constipation free for long enough to return to its natural size. If you treat for a few weeks or month or so once treatment is stopped the constipation comes back because the bowel is stretched so to speak.

Younger DC have only been on it a little while and XH keeps not giving it to them which is really not helping. Eldest has actually had treatment for over a year now and every time we try and stop it comes back. GP said she probably has a slow bowel like I do. I'm probably on it for life, but so much less pain and I can eat more foods now. Its the only laxative type medication that hasn't made my bowel pain worse. I find things like lactulose and Senna actually make my bowel cramps a lot more painful. Also eating more fibre or taking things like metamucil or psyllium make things worse for me. Enemas have never helped either.

Im glad you have some answers, and I hope the doctor gets onboard and that things start improving for you both really soon.

Just seen you said about laxido not being useful. If the volume with large dose is the issue it might still be useful later on as the maintenance dose is a lot less. Have they discussed an alternative like a straight out laxative? My go to before discovering macrogol was Coloxyl, it did the trick just more discomfort.

It sounds like she could do with something strong working from the top to loosen everything. Would she drink piccolax? It's a strong laxative (powder) that can be mixed with a small amount of water. It's often used as bowel prep to clear people out on my ward but it's very effective.

@paisley256 Thank you. She seemed to have a good night and slept some. She still looks very tired though so I don't think she's sleeping properly. There are a lot of distractions which keep waking her up.

@BoilingHotand50something She passed a small amount of poo this morning which was liquid. Hopefully it might be the start of things moving along. There was also blood mixed in with it and some blood down the toilet but she is due on her period so it could be that.

@EliflurtleAndTheInfiniteMadness Is the Macrogol the same as the Laxido? All the different names are confusing. I didn't think about that regards the bowel being stretched. I'm guessing they will probably keep her on it once she has been discharged then. It might work better than the Lactulose. Her dad said that he managed to get her to have all her Laxido this morning (4 sachets) so hopefully that will start things moving. I just I'll be giving her another 4 sachets tonight.

@Faz469 if she won't take the Laxido tonight then I will suggest that what you said. The doctor is no longer talking about her going home which is a relief. The LD nurse has done a fantastic job explaining the issues to them.

You will have another fight tomorrow because it’s Friday and they like to empty the ward before the weekend.

Laxido is the same as movicol and works by softening the poo, whereas senna squeezes the bowel to get things moving.

The liquid she is currently passing will probably be overflow, where it’s moving around the impaction. It sounds like she still has a way to go.

It would be worth her staying on laxido for sometime (even when you think she’s empty) to prevent this scenario again.

I hope she gets well soon and is able to get some rest at home.

Looking online, Macrogol is the same as Laxido

https://www.nhs.uk/medicines/macrogol/

I'm glad the doctor's being more on side now. Yep it's the same thing, macrogol is the actual name of the ingredient and its sold under a few different names and Laxido is one of these. TMI down below.

With the runny poo that can sort of go around the edge of the blockage. It's a good start somethings coming through. But don't get fobbed off, you'll need to see quite a bit of either very hard or big more solid stuff coming through before it's the blockage shifting.

Apologies if I've missed something, but you can combine laxatives. Have they tried senna with the laxido?

@TigerJoy your answer is, yes they can combine laxatives. Senna would be a good choice to add to the laxido as they do different things but you’d hope daily enemas should start things moving.

@StopTheQtipWhenTheresResistance how is your daughter doing today?

Her dad was with her yesterday and I asked him to ask about an enema. She hadn't had one since Tuesday and I thought the doctor's plan was to have one every day for a month. Not sure why that has changed. Anyway, she had a large bowel movement in the early hours of this morning so things are starting to move which is a relief. She's still not eating or drinking independently though so doctor is keeping an eye on her fluid intake.

I phoned up last night as her dad sent me a photo of her being given Potassium intravenously. The nurse said that it was likely due to the levels being low. I asked when she had the blood test but there was nothing in the notes or the reason why the potassium was given which was a little concerning.

I'm hoping she can come home either tomorrow or Monday if she starts drinking herself again. Will have to see how things go.

I feel there needs to be a clear plan in place though, such as who is going to administer her enemas at home and what medication will she be on to make sure everything keeps moving. We also need a clear plan via her GP on what steps to take after so many days without a bowel movement to prevent this happening again. My daughter's LD team have been trying to get a constipation plan put together via the GP since November 2023 but they haven't been very responsive unfortunately.

Just as a reassurance sometimes we give IV fluids when people are not eating/drinking or are constipated as these electrolytes would commonly be on the low side. I would hope though that possibly tomorrow they should do bloods as you should not give potassium without checking before giving further potassium.
It sounds like your daughter is slowly improving ❤️‍🩹 I hope it continues. Perhaps once her bowels are sorted she may feel more like eating.

Sometimes they can do a finger prick for potassium levels. They did this in hospital once for my son who was too distressed to have a blood test. Hoping this is the case as potassium can be dangerous if too much/little. Hope she is on the mend asap.

I'm with her now. She's still not eating or drinking but I'm thinking this could perhaps be down to her environment now. When she was in hospital last year, she didn't eat or drink much but as soon as she came home after 7 months, her appetite increased and she did really well.

Her potassium levels are ok now.

Two different nurses have said they are happy for her to go home but we are just waiting on the ok from the doctor.

Obviously if she doesn't start drinking at home, she will have to come back in.

@StopTheQtipWhenTheresResistance I'm glad she's well enough to go home now. X

Thanks ☺️. I am a little concerned about the drinking and hoping that gets better at home.