I think I should still be in the hospital but I literally can’t

[bleedingbum]

I posted the other day about rectal bleeding and being unwell (not sure how to link to thread).

Long story short I have IBD and am in a flare. I was admitted for four days with pain relief and investigations. Nothing wrong with my rectum (previous bowel surgery) so they think the bleed is coming from higher up in my small intestine. Need an upper endoscopy but they don’t do it at my hospital so have been referred elsewhere and discharged.

I am still bleeding daily, have a bad stomach, and on and off dealing with awful pain. I am absolutely shattered and keep getting dizziness. I honestly do not know how I am functioning

My DS, 3.5 years old, is autistic with learning disabilities (he is developmentally around 1.5 years). He is non-verbal.

When I was in hospital his behaviour was awful, he has become incredibly clingy with us because he does not understand that I am coming back and not leaving him. No matter how many cuddles I could see he wasn’t reassured, he will not be left without both me and his dad in the same room otherwise he goes into full meltdown. He is scared I am leaving forever and I don’t know how to reassure him I’m not because he does not understand me telling him. I can cuddle him and make him aware I am always here but I absolutely cannot leave him again. My DP told me that every night I was gone he would cuddle up in my spot on the sofa with his blanket looking lost. Trying not to cry writing this!

I also have my own business to run, with staff & clients. It is impossible for me to take full days off in a row, I have new clients onboarded last month & it would look totally unprofessional for me to suddenly not be able to take calls etc. My DP does not work and I am the only son working, so this would also be a hit in income for us.

But I know I’m getting more unwell. But I feel selfish, irresponsible, guilty, to do anything more about it. I don’t know how I can leave my little boy to be in the hospital knowing how it’s affected him, it’s going to take some time to reassure him that I’m never leaving him.

So what the hell do I do? I’m feeling so lost. On one hand I know the worst thing is for my health to totally decline, but on the other I’m scared that going back to the hospital knowing I will likely be re-admitted makes me a crap mum, and shit at my job.

help 😢

Trust me you are doing the right thing. I was in a similar situation.. i have Crohn's and have more than twenty operations. I have three sons two with autism. You have to put yourself first as frankly you would be no use to anyone if your dead or spending months in hospital with sepsis. Sometimes you have to get in front of things (I have been guilty of not doing that)

Lastly I am not going to run down your partner but if you have an ongoing issue and he is primary carer as you work then you need to be able to rely on him and he needs to just get on with it. No making you feel guilty.

I have you get seen soon, get pain relief and your scan asap. Please don't leave prematurely.

Can you take yourself to the hospital where they can do the imaging you need and go to their A&E?

I remember your previous thread and I'm sorry you're still so Ill
You must stay and be treated, so you can be the Mum you want to be to your DS
He has his Dad, who knows his routines and what makes him happy and he really won't remember this time.
Hope you start to feel better soon

How are you today @bleedingbum ?

Depending on how much you earn, you could get some UC towards your sons childcare, even if you aren't entitled to UC at this moment.

Do you get DLA for your son?

You can't pour from an empty cup. The absolute best thing you can do for DC is to look after your own health. Hope you feel better soon x

Hope you've been readmitted or given the medication you need awful you were sent home with no care or proper plan in place x

I was on your last thread OP. You need to be in hospital.

I'm absolutely appalled you haven't got contact details for the IBD nurse team. You've been diagnosed, you're under their care, your GP is nothing to do with it - they do not have the specialist knowledge to treat IBD.

Is this hospital the one you were referred to for diagnosis? Is it where the IBD team are based?

Have they given you meds for the flare - steroids most usually I think?

If you carry on you're risking a perforated bowel. You need to be treated.

And yes, you probably are anaemic, most people with IBD are. Constant blood loss will do that. May well be pernicious anaemia too. Have they tested you for any of this as far as you are aware?

Thinking of you OP. You’ve done the right thing to be in hospital, you need to take care of yourself. Your family want you to be as healthy as you can be xxx

Please go to hospital. Hopefully they can help treat you fairly quickly but the longer you leave things the longer your hospital stay will be. I truly hope you are feeling better soon x

@bleedingbum

How are things now?

Also wondering of you are better now op?