DH ill, adult DD needs me too

[ibdcanfeckoff]

DH has an inflammatory bowel disease, has done for many years, but it's progressively getting worse. This flare up started 2 weeks ago and it is a doozy..he's going to the toilet at least once every 2 hours, day and night. the last time it was like this he ended up in hospital for 6 weeks. He is on various immunosuppressants and anti inflammatory meds and GP recently started him on a high dosage course of steroids, so is in an altogether shitty (no pun intended) frame of mind.
DD has recently given birth by c-section, mum and baby doing well, but obviously she needs a bit more help with chores etc. her OH has now gone back to work and although i said i would help out, now i dont feel i can leave DH alone when he is so ill. he cant even get upstairs without my help, he's sleeping on the sofa so he can be close to the downstairs loo. (upstairs bathroom is up a smaller flight of stairs from bedroom) and i'm on two armchairs pushed together because sometimes he is so weak after going to the loo that he cant get back to the lounge without my help.
I just don't know what to do. I feel like i'm stuck between a rock and a hard place. DD knows her dad is ill and is worried sick about him, and insisting i don't worry about helping her out, but i worry that she will be trying to do too much, too soon and could end up hurting herself.
i just cant seem to find a way to help both of them.
sorry if this is rambly but i'm tired and worried and feel guilty

Your dd will be fine. I had a c-section and my dh went back to work after two weeks. My mum is dead so it was just me and the screamy baby. Why don't you buy them another clothes airer to help with the drying. Her dh is supportive so you shouldn't be worrying about her.

Make sure you make time for you to just sit down and take some time for you. I hope your dh gets the help he needs soon.

OP my mum and uncle both suffer with crohns and I know how debilitating something like this can be when it really flairs up. You sound like a lovely mum and you sound like you’ve got great plan. The food will be much appreciated as will the washing/drying. I’ve got a tumble dryer and an airing cupboard and still have washing drying all over the house. I remember the early days well when you get through endless babygros, muslins and bedding. Maybe your dd could look for a tumble dryer in the January sales? I didn’t have one before dc1, but very quickly realised we needed one. We put in the garage because that’s the only place it would fit. I also had a c section with dc2 and I was very grateful for the help once dh was back at work. I really hope your dh manages to get seen soon, he can’t carry on like this for another month.

stay with your dh.
he seems to need your help more than your dd at the moment.
her dh can do cooking/cleaning around work.

I have had both acute episodes of IBD and two c-sections with complications - honestly, your DH needs you so much more and doesn't have a partner to help. That doesn't mean your DD is lazy, simply that her worst case scenario is the house getting a bit scruffy and living on takeaways. Your DH has a much more serious worst case scenario and genuinely can't cope.

It must be so hard for you, it would lovely if you could support your DD and it is sad you aren't able to. You can be angry about that, life has given you too much to cope with at once.

You could: ask a friend or relative to spend an afternoon with DH while you go round to DD, call the hospital and make a fuss (I think you should do this, I doubt he'll get better without going in), try and rally the troops - some churches do a meal making service for people who are ill or post baby but otherwise you could reach out and organise friends and family.

Try and get your DH a specialist support nurse - mine was a godsend,
and if he's passing blood or his symptoms worsen, go to A&E. The one time I held off going in meant I got so bad that I was in much longer, don't wait until it's critical.

I would make sure you take care of yourself though, looking after an ill partner is as hard as looking after a baby (but without the lovely snuggles that make it worthwhile) don't underestimate the toll it can take. Best of luck.

Your just lovely op you family is lucky to have you! Hope husband and daughter feel
Better / heal up as quickly as possible

Update- phoned consultants secretary this morning she called me back within the hour and told me my gp would be calling. He phoned and has told me that consultant said to put DH on highest possible steroid dose for home use: he was on 40 now 60mg per day for 5 days and hospital sending out new appointment for Friday, in case this dosage doesn’t work. dropped food off to DD this afternoon and had a 5 minute cuddle with THE most gorgeous child in the universe, collected a load of wet towels and dirty linen. All done and in the drier, tumbling. SiL picking up at 8pm when he finishes work. Collected prescription from surgery, DH taken extra pills and now asleep. Feeling relieved and hoping this higher dose will do the trick. Because if he doesn’t respond by Friday he’ll be going into hospital for at least the weekend. Thanks everyone for all the support keep everything crossed for my lovely man.

Glad your dh is getting attention from the consultant sooner, I hope the new meds kick in quickly. My brother has Crohn's and has been in your DH's position several times so I know how horrible it is to see a loved one so ill.

A bit late to the party & looks like you've come to some sort of arrangement to help your daughter (you're a fab mum, ignore the eejits!)
I know you're getting a s bed tomorrow but for tonight could you not put a load of sofa chair cushions on the floor to sleep on? Will probably be more comfy that 2 armchairs. Hope your hubby gets seen to & sorted soon & you get cuddles with your DGC soon too.

An excellent present going forward would be an electric air dryer - would give them a bit of help with all newborn stuff and baby things going forward.

Good luck op

Excellent update (although name change fail means it isn't highlighted, so a lot might miss it).
Hope he's on the mend soon.

I can recommend a Lakeland type heated airer for DD if they don’t have a dryer. You just bung everything on in the eve and dry by the morn and you can keep it all in one room rather than have steaming radiators. Hope your OH feels better soon and yes channel your energy to get him help sooner xxx

Cook your daughters meal for her at home and collect her laundry and do it at your house too. That way you're helping her but you're still in your own home looking after your husband too 🥰 I can't think of anything other chores you could do for her that you could do from your own house!

@ibdcanfeckoff how is your husband now? Hope the steroids are starting to have an impact and you've managed a cuddle or two with the baby!!

@missy111 thank you, DH has said the pain isn’t as bad and he is going to the loo at loss less, but he’s still losing blood so glad he’s seeing consultant on Friday. He got a good nights sleep last night and has asked for breakfast today 😊 one slice of toast coming up lol.. that’s all he can manage but at least it’s something.

OP, is he on other medication too as well as steroids?

Biologics such as infliximab are pretty life changing for IBD sufferers.

If he has not already tried this route, maybe discuss with the consultant if he would be a suitable patient.

Wishing him well.

@mollyhuacha yes he’s on immunosuppressants and mesalazine. I think part of the problem with his “consultant” is that he hasn’t actually seen him for about 4 years.. it’s a different registrar every time he goes. Don’t know who he will see on Friday but the important thing is he is being seen relatively quickly. I’m going in with him on Friday so I will bring up the biologic possibilities x

Hope he's beginning to feel a bit better now, OP.

Hi everyone. DH is feeling very much better. Steroids finally seem to be doing the trick. Fewer trips to the loo, pain Is lessening, but still getting cramps. Still some blood loss but again it’s a lot better than it was. When we saw the doc last week the main concern was his current flare up, but as steroids were starting to have an effect, He has to go back at beginning of jan and will be having colonoscopy and discussing next steps.. biologics were mentioned but he seemed to think that these might not be suitable for DH “quite yet” whatever that means 🙄 DD is doing well too, now DH is a bit better she has brought baby round a few times for grandad cuddles (and to use my tumble dryer 😂) she and I spent an afternoon cooking up a storm in the kitchen and she left with many meals for her freezer. Her OH is on his night shifts for the next 3weeks, so he is getting as much housework done as poss before he starts work at 7pm( his mopping skills are lacking though) all in all things are looking up. And my grandson is the most perfect child ever born. Thank you all for your kind words, great ideas and general hand holding when I needed it xxx

Glad things are going well. Hope that your dh is much better very soon.

I have IBD. It's an absolute git of a disease when it flares. I hope you get some sense out of the consultant tomorrow and that he's feeling better soon so that you can both spend more time with your grandbaby.

Your DH needs you. Your DD has her DH. It would be lovely if you could help her but your priority is your DH here, without question. I understand you feeling upset though. It would be the same if YOU were too ill to go. There’d be no question about it. Your DH is the other side of you, a different person but the one who needs you. Your DD is not your dependent child anymore.

Just saw update. Sorry! Glad it’s all worked out in some way.

So glad he's beginning to perk up OP. 

Re no biologics for him 'yet', I can possibly explain what that might mean.

It's because the steroids are working for him and will hopefully bring him into remission. So the option of biologics can be saved for a time when steroids stop working.

If the steroids don't help, or if they do help to bring about remission but the patient cannot reduce the steroid dose without flaring up again, then biologics may well help instead.

But biologics tend to be a long term medication, as opposed to steroids which should really only be used short term.

Biologics are expensive - partly due to the way in which they are manufactured from living cells and partly because they are often administered through an infusion (for example, dripped in over a few hours). Patients need to commit to a strict timetable for these infusions every six or eight weeks.

Or some biologics are presented as self-administered injections, delivered to your home and need to be kept under refrigeration. Patients get a sharps bin to dispose of old injectors.

Both of these methods are much more costly and involved than taking tablets.

@ParsleyPot thank you! 💐 that’s a great explanation and makes total sense. When I asked the doctor why he wasn’t suitable he just kept saying let’s see what happens with the current course of action! The steroid hunger has kicked in. He woke up this morning growling for a full English... compromised with poached eggs on toast... don’t think his colon is ready for the whole greasy fry up quite yet 😂

Gosh you are superwoman, one amazing and lovely lady.
I noticed that you said dh was having toast.
I thought if you had any kind of inflammatory bowel disease you went gf. It might have been gf toast of course.
We dh and I went 100 per cent gf and df in July.
My ibs is so much better and his sinuses are better
Would this help your husband?
We don’t find it a problem. Doing it together helps.
Apologies if you’ve already tried this