How do you get taken seriously when 'You look well"

[ValDee88]

How do you get medical professionals to see that you feel absolutely awful-when you look well? Nothing about me looks as if Im sick and I plod on. But Ive got long term gastritis/IBS/GERD and at present, seem to be stuck in an unending loop of pain and IBS symptoms which vary all the time and have gone on for months. Its waking me up most nights-I very often have 4 hours sleep and yet, yes, I look fine. Ive seen my own Gp twice, he doubled my PPIs-nothing changed. I panicked and said Id go to Spire as this has now taken over my year and stupidly, I thought it would be quicker-he halved my PPIs-nothing changed. Pain killers dont work. I keep saying it doesn't feel like normal gastritis as my normal IBS-D has also changed to a weird D/C hybrid, but I cant make anyone hear me. I know there are other issues-being a female with IBS doesn't help. Its only a year since I had all the exclusion tests, so there is a reluctance to do anything yet. But this is so frustrating. Ive literally got a pain that wakes me up at 4am and I dont care that I look well, Ive never had this before and I just want someone to do something. Rant over😒

[mowmow]

I've had the same problem for the last 30yrs. I don't know where you are but here in Edinburgh, I've found little help. I've basically web searched and figured things out myself. How to eat right is always difficult as reactions to food are common. I wish you well and good luck 👍

[PixieElv]

Hi ValDee88

I am so sorry to hear you are feeling like this. This is such a common occurrence especially for us Ladies. It’s all in your head…

I have a left field random suggestion for you. I had a similar thing and it woke me up at exactly the same time every night. It turned out to be a Helicopactor stomach infection, that had caused a stomach ulcer. I spend 3 weeks on various antibiotics but it eventually cleared up.

Apologies if you’ve tried all of that already and good luck

[Linley]

Know how you feel once the exclusion tests are clear you just know you are going to have to get on with it. Just one question when was your last colonoscopy?

[ValDee88 in reply to Linley]

Last colonoscopy was only 3 years ago, clear apart from a small patch of diverticulosis-no infection at all. Last endoscope was only last year and no change from my first one. I can only think I have either really aggravated my gastritis as I have been extremely stressed this year and I also had weeks of really bad digestive symptoms with Covid or I have an ulcer🤷‍♀️ The other side of the issue is every professional I see has had their own theory for IBS or a gastritis flare-double PPIs, reduce PPIs or change brand. I feel like Ive lost the plot.

[Linley in reply to ValDee88]

Think you have to go with your gut feeling(sorry no pun intended) listen to your body, if stress is present at the mo, it may be a factor. Wish you well

[Paula1710]

You sound exactly like me.Im on cancer pathway as I've lost too much weight.Colonoscopy this year and upper endoscopy.I too had COVID and now I'm in agony.Think I'm going to have a 2nd upper endoscopy in 2 weeks with biopsies.ferritin dropped.FIT test normal.Had small bowel mri (might be worth getting gastro to test small intestine) coeliac,calprotectin,cdiff,ova,cysts and parasites (stool) test etc if you haven't already from your gp..i too had ppis doubled last year,made it worse,tried going on lower doses same.now come off them for 5 days so this time they see what's going on.had acid but it's no worse than being on the ppi.i kept pushing as I know somethings not right.Hope you find the answer

[Waiting_for_godo]

This is so heartbreaking and I find the same reaction from everyone. I'm totally isolated now as I don't interact with anyone as people say things like ' take parcetamol' ' look other people are suffering from cancer you only have pain. I have feelings of anger and hurt and I'm no longer consulting any doctors I am being my own doctor as no one else cares.I totally get you and send u healing wishes.

[xjrs]

Have you tried Alflorex probiotic which has been scientifically studied for IBS? It has really helped me with my IBS pain.

[ValDee88 in reply to xjrs]

I do keep hearing about Alfrolex, I will read it up-thank you!

[johnjerry]

Who told you you had to look well to get proper medical attention? Relay your symptoms and if your doctor doesn't get it then find a new one who will. Your symptoms fall into a gray area that I believe today's medical professionals don't have answers to. Don't rule out learning about diet and alternative medicines that could help while you frustrate yourself away with the so-called gods of medicine.

[Paul120674]

i suffer from ibs all my life after having numerous stomach bugs & helicobacter pylori just gotta enjoy the good days & let the bad days with nausea & emptying bowels pass 😃

[corpgov10]

I've pretty much solved my IBS alone though trial and error, taken me a few years, mind and plenty of anxiety and stress but here's how:

-did all the main tests and investigations to rule out major concerns

-adjusted diet to begin with, then slowly add back other foods

-increased exercise intensity (resistance training) which has helped my mental resilience

-practice regular yoga and meditation.

I feel great and I no longer see doctor's. Waste of time. Take responsibility for your life, do the research and put in the effort!

[Luisa22]

People are always telling me "you look well" and have even said that when I was in a flare up. They didn't know of course that I have IBS. I was just tentatively walking down my lane to get some fresh air, Not too far from my toilet!!

I put a very tiny bit of make up on every morning. It helps to boost my spirits and reminds me of the "old days" so I imagine sometimes it's the bit of blusher and lippy that "looks well" not me. Call me vain but those routines remind me I'm human.

Doctors don't seem to be able to empathise or see beyond their tests. If you test negative (colonoscopy, stool test, blood work etc) they can't imagine anything else and come to the wrong conclusion "it's all in your head" at worst. At best, they try you with something really inappropriate, such as the WRONG low dose anti depressants which make your own kind of IBS much worse. or PPI's which seem to be given out like sweets nowadays, though I know they have their place with certain patients.

[Sallybones]

well your gut and brain are interconnected. Something GPs tend to ignore. If they've tested everything at the bottom end so to speak they should look at the signals being sent to your gut. Been there. They'll try and shove tablets and all sorts down you which just add a smoke screen and everything deteriorates. I've got to the point where I survive on crackers and water mostly because my system shut down. Just had botox injections in my pyloric sphincter to see if it helps food move through better. We shall see. I was always being told I looked well when I felt dreadful. Its actually quite demoralising isn't it. Best wishes.