Feeling a little lost!

[SophieC22]

Hi all, so sat here writing this at 1am after just being sick-woke up with a lot of pain and nausea and it just happened...definitely IBS related but not sure if it’s normal? Just looking for some advice/support!

I have been off the restriction FODMAP diet for about 6 weeks now, as it didn’t show anything and I started to lose weight (I’m pretty tiny as it is), am still losing weight as have completely gone off the idea of eating. This is all pretty alarming for myself and family as I’m getting to the point where I am as small as I should get-any smaller will start becoming “underweight”. Easy solution=eat more! But I honestly can’t-i spend the whole day feeling full, even if I’ve only eat one/ one and a half meals a day.

I’ve finally got an appointment to see a gastro dr (been diagnosed 5 years and have only seen gps and dietician!!) but not for another 2 months (typical NHS).

Would really appreciate some advice or words of encouragement-I’m only 20 and am desperate to have a life outside of IBS.

[weegmack]

Oh poor you 😞. There’s nothing more horrible than feeling so ill during the night and you feel so alone.

What diagnosis do you have? I’m just wondering if you have something called gastroperosis - when the stomach doesn’t even empty properly and it can make you sick.

I totally understand why you don’t want to eat. I’ve been there some years ago and it did take me a while to resume “normal” eating. Your weight is certainly something you need to work on, but gradually. It’s natural for your family to worry, but they need to give you time. I would suggest eating little and often.

GPs don’t particularly handle IBS well, because it’s so individual to each sufferer. The gastro will be able to give you more personal advice and treatment. I’m 43 and been a sufferer most of my life and it does get better. Personally, I’ve cut wheat out of my diet and that’s made a big difference. I haven’t touched a morsel of wheat for about 10 years. Also I noticed that my IBS was SO much worse in the second half of my menstrual cycle - so I have a Mirena Coil fitted, which also helped my IBS symptoms.

IBS is all about finding what works for you personally - it can take a while to find out what’s best. But I promise it won’t always be this bad. Sending you a big hug xxx

[SophieC22 in reply to weegmack]

All I have is IBS-drs have been sooo rubbish😑 I have not found anything that works for me as of yet. I am planning on doing lots of research to present to the doctor when I have an appointment, and will certainly add gastroperosis to the list! Thanks so much x

[NobodyYouKnow in reply to SophieC22]

Make sure it is spelled right - it is Gastroparesis

[Justcausetyler]

You are not alone. I have ibs as well, In fact, what you said is exactly me. My mind is telling me dont eat you dont need to. But I know that I need too. But I also dont want to because it gets to painful and I already deal with it every day. But dont end up like me where I became sick, runny nose and coughing up stuff, and i also didn't want to eat anything cause i didn't want the pain to deal with and to be sick at the same time. But i really screwed myself up, I'm now severly malnourished and i dont even know what i can and cant eat because before i was just eating whatever i wanted. That happened 4 days ago. And I'm still recovering. My roommates said I look dead. Me and my family are now trying to figure out what I can and cannot eat. Trust me you dont want to feel this way. Whatever you do dont starve yourself. I know it hurts but you have to figure out what you can and cannot eat. All of this has made me become depressed, which I'm usually not. Also what I've learned. Make sure you are consuming plenty of magnesium. And nuts may be painful for you as well so try to stay away from those. If this doesn't help you may need to see if you have ulcers. But hopefully not. It's also not fun being called a skeleton whenever someone hugs you....

[Justcausetyler in reply to Justcausetyler]

Not eating has changed me as a person and not the way I'd like it to. You know that snickers commercial, you're not you when you're hungry. Well its true, not eating will change who you are as a person. Dont let yourself get like that. Take it from me. You just start becoming easily aggravated at everything. I never use to be like that. Hopefully it will change when I get my nutrition back on track. Also try at least taking multivitamins. So you are at least getting what you need, while you aren't eating alot.

[Chancery]

Sophie, have you been tested for coeliac disease? If not, you need to ask for it to be done asap. The severity of your reactions suggest it.

[SophieC22 in reply to Chancery]

Yes. Tested for it every year! Always negative.

[Chancery in reply to SophieC22]

Ah, I know that feeling. I've had the same, loads of tests - no result!

[Bungiecat]

You could try Ginger biscuits and plain Greek yoghurt it helps me as you can put the ginger biscuits in the yoghurt or eat separate. This will trick your stomach into thinking it has had a meal but you have just snacked try these small snack kind of meals they really help me Gail

[Eternity78]

Hello Sophie ..i can feel your agony through your words and totally understand it 💔 i'm now at this phase where i look like a skeleton ( i weigh only 40 kg ) being scared to eat and all the horrible consequences of ibs and all .. you know what i mean ..but mean while as a temporary measurement to stay alive ..my family would call a doctor for a home visit to specifically feed me dextrose and electrolytes fluids through IV injection at home ( No energy to go to hospital and wait for my turn i will feel sick and might vomit ) it takes around 30 minutes lying down in my bed with feeding tube in my arm ..i feel much better and relieved after that ..its like i have eaten without really eating .." hope you get what i mean " .

i do this from time to time whenever flare ups knock me down to the point that i can't even " chew " the food as i have no energy left even for the action of "chewing " 😩🤐

i think you can get the same done in the ER of any hospital ..ask the doctor for it ..and some doctors will request it for you if they feel you're dehydrated or look pale and malnourished .

wish you all the best and remember you are NOT alone 💞

[SophieC22 in reply to Eternity78]

Hi thank you so much for your lovely reply, so so nice to hear from people going through similar things to me. Are you UK? That sounds like an awful position to be in (I am a nurse and I can only imagine what awful position you must be in having to have IV fluids to help) I can imagine it must be a relief to be given all your nutrients without having to disturb your gut, but I just can’t imagine the UHS doing this. I am on a quite strong anti sickness that I take when I have to drink my high calorie drink. This means I can gain back the weight from the drink instead of having to eat a tonne (which would be awful). So I am now just passing time with drinking my complan and taking anti sickness, anti acids, amitriptyline and antispasmodics to attempt to help whilst I wait for a gastro consultant appointment😅