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. :(

[Buttercup27]

YANBU ! I cannot even contemplate what you are going through you poor thing and an unmumsnet hug.

[RealityCheque]

YANBU.

[StillStayingClassySanDiego]

Bloody hell, OP that sounds just awful, no wonder you're devastated.

Food is such a massive part of our lives, cooking, eating and sharing it with family and friends is usually such a pleasure.

You're not unreasonable at all, I really really feel for you.

[Bunbaker]

I didn't want to read and run. You have my sympathy.

[GenevaMaybe]

Oh god you poor thing. Sending huge sympathy hugs to you.

[HSMMaCM]

YANBU at all. I can't imagine how I'd feel. Have the hospital offered you any counselling. If not, please do ask for it.

[LazyLouLou]

Ooch! Yes, YABVVU to be in such a state. Your stomach should be kinder to you! But YANBU to be pissed of with it!

Have you looked at some of the newer treatments, gastroelectrical stimulation, botulinum etc? I know that's clutching at straws, but sometimes that is all you are left with.

Big hugs, stay unreasonable and, once you have finished crying, work out what you can do. Which is just another lame way of saying "chin up" I am afraid!

[PtolemysNeedle]

Of course you aren't being unreasonable!

Sorry to state the obvious, but it's not just eating, it's everything that surrounds it like you say, the going out, cooking, the whole experience of trying new places and foods, the social thing.

I have every sympathy, I can't imagine what it must feel like for you.

[SaucyJack]

That's really shit. I'm not even going to make crass jokes.

Can you suck on things to get flavour at all? What about drinking?

[misscph1973]

Oh, I am so sorry, that's awful.

Have you considered getting treatment/advice outside of the NHS? I am not saying that there is a magic cure, but you should leave no stone unturned. Start with a dietician, perferably one in the functional mediciane field. They have access to a lot of tests and they tend to specialise in rare/incureable diseases. And they are not as expensive as you might think.

Also, you have to study this and become your own specialist so that you understand your illness and you can raise questions/concerns to ensure you get the best treatment and all options are exhausted.

[givemefood]

Thank you. I'm crying again!

I'm waiting to be referred to a top specialist as it's not a well understood condition. After all my tears, we (DH and I) have decided that a few hundred pounds for a private consult would be a good use of our limited funds. I'm hoping to be well enough to travel to London to see this specialist in the next week or so.

I've been assured that this is a temporary measure but given that I'm still puking tube feeds, I'm terrified that I'm rapidly heading towards intestinal failure and needing TPN.

I've seen the counsellor at my GP surgery who was lovely but not helpful.

[CiderwithBuda]

Oh you poor thing. YANBU at all. Food is such a huge part of our lives. I really hope you manage to see a specialist and they can help you.

[StillStayingClassySanDiego]

Bless you, I can understand why you're so upset.

[dontcallmelen]

Op YANBU no advice but hope you find something that helps, good luck with the consultant.

[NurNochKurzDieWeltRetten]

YANBU that is awful! You are reacting absolutely normally - anyone would unless they hadn't properly taken the information in.

I hope the specialist is more constructive and things do improve.

[squoosh]

YANBU.

What a horrible thing to have to come to terms with. I'm so sorry you're going through this OP.

[FurtherSupport]

Gosh, this is the first thread that has made me sob in ages. I can't being to imagine how horrible that must be. I wish I had something helpful to say, but you are most definitely not BU to be feeling devastated.

I really hope you find the right treatment.

[greyleaf]

fucking hell that is rough your so not being unreasonable here if it were me i think i would be inconsolable

[Chipshopninja]

Oh love that's awful!! YANBU at all!! I would be devastated

I hope the private consultant has some answers and can offer you some hope

[MaidOfStars]

Oh that sounds terrible, both a physical and psychological shock.

I work with a (pediatric) gastro surgeon and he does absolutely incredible things, lots of tubes going here, stents going there, valves being removed and muscles being widened. We have fun with toilet roll middles, when he tries to show us his latest surgery invention. I certainly know he will do everything he can to avoid or remove the need for TPN.

I hope you can find some hope for an intervention. There are options out there to try, so fingers crossed your consultation goes well. It would be money very well spent.

Good luck.

[LittleprincessinGOLDrocks]

Oh hunny, you are not being unreasonable at all. If you want the name of a great NHS consultant pm me. It may not be right for you, so don't panic but if they say you need your stomach removed give me a pm. I am able to eat bits and pieces, and I really missed it when I was on TPN for 10 weeks so I know what you mean. I am now on tube feeds but that's just additional support as I had complications due to my health being bad pre-op. Take care and good luck x

[RedDaisyRed]

Poor you. Yes it is a good idea to pay for a private consultant just to get that extra time and an additional opinion on what can be done.

I hope it can be sorted out. If not you can always become a family who don't concentrate on food. We just about never eat out and get on really well and talk all the time and are all very happy but don't even often have family meals. It is possible to form loving relationships and do lots with a family without food. Hard to adjust though so I understand how you must be feeling.

[lionheart]

YANBU Op, not at all. The illness sounds awful. I think anyone would have a really difficult time adjusting to the fact that they could not eatfood has so many different associations and meanings, aside from pleasure and nurturingplease don't be so hard on yourself.

[TattyDevine]

I don't blame you at all for being devastated. Food and drink is a big part of most cultures, definitely ours! It does fill a psychological gap, too much for some people I realise, and its just part of our everyday life and has been since we were born that you would definitely feel a part of you is missing if you couldn't.

Hope you are okay x