To feel devastated about not being able to eat?

[givemefood]

I've named changed because I'm utterly humilialted and shocked at my own reaction. About a year ago, I contracted what appeared to be a vomiting bug. Only, the vomiting never stopped, up to 10 times a day at my worst point. After a lot of to-ing and fro-ing, head scratching from specialists and hospital admissions, I was diagnosed with Gastroparesis. In simple terms, my stomach pump does not function properly.

I've slowly got worse and worse but always managed some food. After my last episode, I've been advised to come off oral nutrition, with the exception of a limited amout of fluids, and be tube fed. I've been on tube feeds on and off but I've been able to eat. Due to complications, I now can't. I was told on Friday. I've cried on and off the entire weekend, including spending all of Saturday in bed because I just couldn't face the world.

I've always been a food lover. We go out to eat as a family all the time. I spend money on good quality food, love cooking, love baking and just generally enjoy socialising around food and wine.

I've not really come to terms with my illness and although eating has slowly become more restricted, the sudden realisation that I cannot at all - even for a short period - has crushed me.

AIBU to be in such a bloody state? I think I am. :(

Good lord you are nbu at all.

I would also feel similarly if I was told the same.

How awful for you

Oh how horrible Puts my problems right into perspective. I hope something can be done. Lots of knowledgeable posters here I'm sure.
to you darling. As they say 'unmumsnetty hugs'.

OP so sorry for you. I had a stomach bug that left me with long term problems too, though not as severe as yours. I slowly got better but I remember sobbing because I just wanted to eat normally, cook what I wanted and go out for dinner again.

I really really hope the consultant can help you. Your reaction is totally valid and my heart goes out to you.

I had to find other ways to 'treat' myself. So instead of buying chocolate I developed a bit of a magazine habit. I hope I'm not coming across as patronising, I know what I had is not even close to what you're going through.

YADNBU

Any long term illness is tough to come to terms with when it affects you being able to lead a normal, active, family and social life. I hope that a doctor will be able to help you very soon.

So sorry to hear this, OP, that's awful and anyone here would feel the same as you

I really hope the surgeon can help you, I have worked with kids who cannot eat and need tube feeding or TPN and I have seen first hand how distressing it can be.

Have you made contact with PINNT.com? I have no personal experience to offer, but have met a couple of lovely people from PINNT for professional reasons and am sure they can offer support.

And of course YANBU at all.

You poor thing!!! May I suggest (not to dis the NHS in any way) but are you not entitled to a second opinion at another hospital without the expense of private health? I think your GP might arrange this (clarification anyone please?) I understand that urgent intervention is of course the main concern at present.

so sorry. Of course, you're not being unreasonable. I'd be devastated too. Hope the specialist has some hope to give you.

YANBU and I have nothing but enormous sympathy. I really really hope your condition improves and a treatment can be found for you.

Yanbu at all. I was in hospital unable to eat whilst I had a stent in my airway and even though I knew it was only for a few weeks it was very hard. Food - eating, cooking, thinking about it is a big part of my life. Hope you can get some help soon.

this sounds a terrible thing op,would you not be a candidate for a gastric pacemaker?

I'm sorry OP, that sounds awful. I think most people would be devastated, YASNBU. I hope you find a good consultant soon.

I agree with everyone else on this thread, OP, you are DEFINITELY NBU!

Just comtemplating what you're going through has brought tears to my eyes. I hope that consulting another doctor can help you somehow

Thank you for your kindness. I'm glad I'm not being totally unreasonable. I was quite shocked at how strongly I felt. I suspect it suddenly hit me; how I'm not the person I was I year ago. I'm not the mother I used to be and I hate that I can't give my beautiful children what they deserve. My husband is a great father which is a relief but I am grieving for what I can't give them.

I am entitled to a second opinion on the NHS and I've been referred but the time factor is an issue. Waiting seems painful, both physically and emotionally. I'd like to have some further tests to identify exactly where the problem lies, so we can look at more targeted treatment. A private consultation just to talk it through would give me some hope, I think

I've started to get in touch with various support organisations, mostly through facebook which is helpful. Equally, it can be a bit doom and gloom at times, so I use them in small doses. I'm lucky to have a lot of support in my day-to-day life.

Some people who can't eat chew food and then spit it out. That initially sounded a bit grim but it's beginning to sound more appealing. I do feel better for venting anonymously. Thank you for hearing me.

Very sorry to hear this it must be awful. I think you are not going to be a worse Mum for this even if you can't eat, just showing your DC an example of coping with a very difficult situation is a good thing, plus you can still do all the usual mum things. But it is very hard for you sending lots of

I'm so sorry you're going through this. yadnbu.

Oh OP, I really do feel for you. YANBU at all!!! This is a massive upheaval for you and anyone would feel knocked for six by such a development.

As PP have said, please try not to be so hard on yourself. More easily said than done, I know, but this is not your fault. You may feel that you're not yourself or able to mother your children in the same way but you can pretty much guarantee that they still love you in the exact same way they did a year ago, if not more.

I'm wondering which specialist you are hoping to see in London? I'm under the care of the gastrointestinal physiology unit at UCLH and they are my angels. I've seen lots of patients in clinic with gastroparesis and many of them have ended up there after hitting dead ends elsewhere. The waiting times are, hmm, lengthy? There's lots of chatting with other patients in the same boat, which can be reassuring. Online forums can have their uses but can be so full of doom and gloom - people only tend to post on them when they've got a problem and not once they're fixed up, which is a shame.

Have the doctors you've seen so far been able to explain the onset of the gastroparesis? Are they putting it down to the bug or could it be an underlying condition? Sorry to ask so many questions but my stomach is losing its function and the UCLH specialist I'm seeing (NZL) thinks this is all down to an issue with mast cells.

I can appreciate (to a much smaller extent) what it is like to go from being a foodie to having the brakes put on. The family meals, eating out, cooking with the kids...losing that, even temporarily, sucks...so much. I try to focus on other things that we can do together and on trying to control what I can about my condition. Get to that specialist as soon as you can - beg or borrow the money because even talking through your options might help you feel more hopeful about the days ahead. I'll keep my fingers crossed for you!

YANBU !! At all!!

That sounds awful for you!! I hope things improve

That sounds horrible, I can't advise but I send you love. YANBU at all.

One of my dps friends lost his sense of taste and smell in a car crash (he was a chef) what you have sounds even worse!

Can you do other activities which don't involve eating but fill your senses? Bubble baths - sorry if that's a bit lame

Another saying YANBU. I really hope they can find a way forward for you OP. That must have been devestating news and I'm not surprised you feel so awful.

I'm very sorry to hear this, it's very hard to come to terms with a chronic illness and you must be very upset xx
I've had brief periods of being nil by mouth and drinking nutritional shakes for Crohn's disease to try and give my digestive system a rest and it's very hard. There's so much focus on food & socialising around food.