Fed up of feeling like a liar with ibs and other health conditions

[JCJourney]

Apologies if this comes off as a rant, but I feel like I need to say this somewhere in hopes someone can resonate with what I'm saying within such group where we suffer in a similar manner.Since December last year I had gastroenteritis, went back and forward to the doctors with this as it took over a month to heal from it and was literally laid up in bed with a hot water bottle after the initial symptoms stopped. Barely eating, silling water and in pain.

Move forward 7 months and now it's the IBS label. I've had the blood tests and FIT test done and all normal, great right?

Well within that time I've lost 2 and half stone from not being able to reach my calorie intake daily (I physically can't stomach the amount needed daily) and been doing my own food diaries as well as trying every supplement going for aid. Been back and forward to the doctors again with a referral to the gastroenterology made and an 8 month waiting time.. in the mean time it's been trying peppermint oils, mebeverine, Laxido (tend to be more C than D) and have paid to have an intolerance test myself as to be honest the GP's just dont know what to do with me as I already suffer with other ailments (more on this later apologies for the longevity of this post)

Intolerance test came back with what I'd actually been able to decipher plus a couple of other bits, the major one being dairy not being something I am tolerating well anymore, and I can vouch for this as on 2 occasions of trying dairy again it completely ruined my stomach for several days.

Gluten potentially too though GP tests said negative to this, but for now I've cut it out as I've had Zero help of what to do losing all the weight and what I could and couldn't eat with what it was doing to my body.

Now been forwarded to the dietician... which is where my other ailments come in. I've suffered with mental health problems for several years BUT never had stomach issues before the gastroenteritis let me make this clear. I suffer with GAD and chronic tension headaches and currently going through the loop for ADHD/OCD assessment to see if this is the root of the potential issues of how I've become like I have today.

Now I've spoken to the dietician, what do you think the dietician wants to point the finger at? My mental health being the culprit.. I am well aware by now of the connection between mind and gut and what stress can do to the body (I've suffered with it long enough) and seen it before it happened to me too, but according to their "clinical studies" they've found a link now.

I mean I bet if you pick the worst out of the bunch of most people with IBS they would be suffering with some sort of mental anxiety or anxiousness in general. Also are you telling that that everyone who has IBS now has a mental disorder? If that's the case then surely you've found your answer on how to solve IBS issues and that is to aid people's mental health, which they can't because I've been stuck in this loop for the past 8 years and the furthest I get is to CBT therapy where I could tell them at this point how to write a diary and breath out through mouth and in through their nose, and GP's put you on a dose of antidepressants.

Basically throughout this process I constantly feel like I am a liar to the pain I am in, shunned for everything I need help with, constantly on a waiting list I never reach the end of and I'm honestly sick of it. How any of these experts that go through education can honestly say they know how it feels or what your body is going through mentally or physically is nothing but impregnatable to the human mind and something experience will never be able to replace.

I would rather them just be honest with me and say we don't know what to do and what's causing the pain your in, at least that way I can move forward for myself instead of living with some hope that someone has an answer that'll help me because they never do, it's just more tablets.

If anybody gets through this I thank you, and please don't think I'm ready to do anything stupid, I have a family that depends on me and want to get better, I just can't deal with feeling each "professional" giving the same expression with the same answer. Tell you not to go on the Internet (and trust me I'm not playing doctor Google, I use places like here to try and see if others experience can aid me) but then it's filled with knowledge that you ask the GP's about and they just can't even answer it or disregard you.

[JessFM]

I feel your pain BELIEVE ME! I have been on medication for my mental health since the age of 18, I am now 29years old. I have IBS, Fibromyalgia and PTSD.. I had a lower colonoscopy and results came back 'normal' so further investigation was done and so I am waiting for results for a full colonoscopy and an MRI on my bowel... Medication for Fibromyalgia is pointless. I am waiting for an assessment for ADHD and Autism. I was waiting on NHS list for 3 years and i'm now waiting on the list because I asked my doctor to refer me to Psychiatry UK to be assessed. You should do it too. I also tried mebeverine, peppermint oil and laxido aswell as senna tablets. I also have went from a healthy 16stone to not being able to gain weight over 13stone 12 which is VERY stressful. From size 20UK to a size 16UK (and shrinking more...) .. All clothes are hanging off me and i've had to sell most of my clothes too. I did not skip any meals, diet or exercise and my bowel movements are inconsistent and I am constipated ALOT which results in ruptured piles many times. EVERYTHING upsets my stomach and i've been tested for celiac which was negative. Fingers crossed the consultant gets back to me real soon. I so desperately want to gain weight again.

All the best to you & chin up, I know it's hard

[JCJourney in reply to JessFM]

Thank you for the response and sharing your story too, its sounds like a similar situation to be honest and my heart goes out to you too.I am going through the psychiatristry UK RTC service instead as for the ADHD I got flat out refused with the NHS and have actually recently applied for the autism too as my son has recently been diagnosed with autism and shows similar traits to myself but much stronger when I was younger and even now.

Even then I've had doctors say to me, even then if you know there's nothing we can do for you. The amount of validation given just makes you think why did they take up the profession in the first place.

I don't know how I'd get diagnosed for anything past anxiety or depression to be honest, I sometimes get random pins and needles, I'm constantly fatigued, random pains, asked about fibromyalgia and chronic fatigue syndrome too with no willingness to uptake the symptoms.

I hope you also manage to get some further aid but most of all look after yourself, I think that's what we all can do, we know our own bodies the best.

[Nothing_but_books]

I've been told by numerous doctors of many different specialties that I make things up. It was shocking in the beginning when I was begging for help, now I don't expect more, just consider myself lucky when I get a bit more respect.

A therapist I complained to about how hurtful this is said it's a common complaint among people with chronic pain. Doctors expect to be able to help people, and if they can't they're likely to blame YOU. 😬

[JCJourney in reply to Nothing_but_books]

Thank you for replying, and sorry to hear your own experience too. It seems to be a pass the book situation and unfortunately it's landed back on us. I mean something must be seriously wrong if they were going back and forth to the GP and "making up" their pain symptoms.