I’m in a very painful place and wondering if ANYONE OUT THERE can Help or know of ANYTHING/ONE I can try?
The question is below - (the whole ‘abridged story is on my profile page) I Thank You immensely if you have time to read it.
WHEN THE NHS HAVE A ‘MEDICO LEGAL’ REASON TO LIE AND NEGLECT TESTING LEAVING THE PATIENT IN ACUTE AGONISING DANGER, WHO DOES THAT PATIENT TURN TO?
Hello there im so sorry to hear your not in a good place at the moment. I did read your bio but it doesnt go into detail of ehat happened to you but from experience with the NHS ibs still isnt treated the way it should be in my opinion. They look at each symptom individually and treat that way instead of trying to-find whats actually underlying. And if you ask for the same test more than once (in a space of 10 uears) you are made to feel a time waster, someone who is looking for attention and labelled with a mental issue. Even head gastroenterologists within hospitals dont seem to have much clue and are quick to dismiss. I was told they wouldnt put me through tests as it would be shame to put me through that if in the end it wasnt needed. What kind of reason is that!! My sympathy lies with you and if you wish to go into further detail thats fine too x
I have had the same experience of my gp looking over the top of his glasses and sighing as if to say please don't waste my time I have real sick patients to see.
I gave up in the end, decided after 8 years that IBS wasn't going to kill me .. so I just grin and bear and rely on self medication
I feel the same they just say you have to find out yourself what you are eating that is causing the pain. I have IBS C. They have given me a CT scan, MRI and colonscopy. They have tested me for gluten allergy and said I am not gluten intolerant. I am now trying giving up sucrose sweetners and cheddar cheese although it does say on the fodmap diet you can have both of these. I really want to see a specialist for IBS, told I can't. Yes I was told that there loads of people out there who have this and your not alone. I wish you good luck.
Thank You so much for your reply. I will try to compose a time line to give a little more info. For me it all began with an horrific haemorrhage from the back passage. (IBS?) 2 years previous I’d had a highly unorthodox appendectomy. My appendix was removed with one single gridiron incision on the LEFT HAND SIDE of my body months before I got married. A year or two after our wedding? The pains returned. This time a large tumour (8x bigger than the ovary) on my left Ovary had them reopen the same scar. Warranted as emergency surgery due to the black shadows thought to be cancerous - Delayed by 36 hours. Burst open by the time they did anything! This apparently involved them lifting up organs to suction out what I was told was infected blood. Later that year I haemorrhage - they do lots of tests but point blank refuse to do a laparoscopic test. Diagnoses given were an intussusception of the large intestine, Anismus, intermittent haemorrhage in large intestine, medical anorexia, athralgia and so on. Only to be retracted months later!
2014 - diagnosed as intestine spasms so violent my intestine was inside out by 8 inches and full of a lot of blood.
No tests or treatment since. Put on an illegal, rejected and banned medication when I asked to come off ALL OPIOIATES! This was by far the most dangerous thing to do to me for 5 & a half years!
I got myself off it through 4 months of screaming pain - 6 months ago. No treatment. (Thus unveiling the damages caused that no one will ‘clean up’)
Sorry this is probably all WAY too much information for anyone to take in.
I’ve been fighting a WHOLE system for over a decade for my right to live.
I have no way to get help here so after my ordeal yesterday- not the usual ‘intestine forcing its way out with each BM’ which I’ve had to deal with since last summer - now a loop of my intestine is trying to force out so blocking intestinal end which is so badly damaged. I have no idea where to go but NHS Highland caused all, covered all and put A ‘do not admit’ in place throughout Scotland so We finally discovered this once I got my GP notes and it suddenly made sense why no one would admit me elsewhere.
I have found out the hard way that The Human Rights Act cannot ensure or even help when EVERY RIGHT IS TAKEN FROM YOU.
Now I have proof of all this, (hopefully not too late) we just have to get in the car and go South.
Where? I do not know. Somewhere that must please help! If there is any humanity left in this world.
Oh, to end on a lighter note? V I POO - I saw your post on it. I invented my own Organic brand YEARS AGO - I called mine Pitt-Stop or Penelope Pitt-Stop! Haha it’s my holistic herbalist health care which I’ve been doing since I was a teenager (so the lie of the medication I was put on was a double blow) nevertheless I mentioned only to say thank you for replying-strange I didn’t look again until now when I’m on the road ASAP to who knows where or what, but providing I make it through - I promise I’ll make up a much more VIP VERSION - A LIMITED EDITION.
Take care, with kindest regards and good health vibes your way.
Love Kx
Oh my goodness you poor thing iv never read anything like this in my whole time of being on here and iv been here a while loitering 🤣. I genuinely have no words for what you have just written i can only imagine the pain and anxiety you have been through and cannot believe in this day and age someone can be treated this way. Iv seen animals treated better. How can they possibly refuse to help you with this happening im in disbelief. Of course you should travel south and find somewhere what else can u do. I have everything crossed for you. Let us only hope in years to come the whole ‘IBS’ label is dealt with as i will always feel it lets so many people down. The misery pain and depression and the feeling you have lost the life u once led and the person u once were is so overwhelming some days its hard to remember why you carry on. But we were made to fight and survive and be forever hopeful and so we will!! My thoughts are with you. All the very best to you and your loved ones xx
Thank You for your kind thoughts. I have written so much about my ordeal and what you’ve said is so much of it. I am broken but I will continue to fight with every single ounce of strength I have during this journey. With a promise to ENFORCE the easy get-out clauses lazy/uninterested/or simply “forced to follow red tape“ GPs - (I know personally there are damn good doctors that are not ‘allowed’ to do what they KNOW is right for Boards Politics- boards made up of no medics - overspending by £70 Million+ per year - coinciding with the ‘Boards personal spending Exposés (as often as MPs) in the news constantly - through NHS Expense accounts running up thousands per week on luxurious items! So many GPs now speak like MPs. I was FINALLY told the medication I was put on was killing me by 2 different factions of NHS in Scotland 3 days apart but NOBODY knew how to get me off it safely.
I fall apart a little at the GP who tells me “You must tow the party line!” At THAT moment, I fell from the face of what I once knew as the WORLD - I no longer recognised anything or anyone around me!
Sorry, that’s not where I was trying to go here.
Part of it was the FACT that the ‘Board’ here wanted to continue prescribing medication that cost £3.4 Thousand PER WEEK that was killing me rather than spend £2thousand on an out of area referral! Not at all suspect!
I am sincerely DETERMINED to STOP THE EASY ‘CHRONIC PAIN’ CRAP THAT DESTROYS OUR LIVES, OUR CHILDREN AND COUNTRY!
I truly believe before ANY call out on CHRONIC PAIN is ever made it MUST be met with three different types of top professionals from each aspect of the healing world. The PATIENT must have the final say on WHAT they felt from each experience and expert. Right now it’s an idea that lives in my heart and head when the pain doesn’t have me without the ability to take a breath.
The idea being MUCH MORE COST EFFECTIVE long term for the NHS approach - MOST IMPORTANTLY A LOT LESS DAMAGING TO THE ALL TOO BEAUTIFUL SOULS LEFT TO SUFFER, SO OFTEN NEEDLESSLY!
I was thinking along the lines of:
1. a.The tests and surgical side via Gastro also
1.b. another side so few get to see, Non-surgical Gastro specialists that deal with cleansing the colon with a ‘heal the inside’ approach. (I was fortunate enough to have some time with an Amazing professor of Gastroenterology, a man so humane I still have yet to meet another like him. I will name him as I build up the courage to put my site out there.) There are many in this quickly progressing field. A friend was told here she needed 3ft of the large intestine removed due to Crohn’s - An out of area referral took her to this professor, He rinsed her intestine with a healthy skin healing medication - she had no pain and no operation for the best part of a year.
So surgical and non-surgical options.
2. Holistic healthcare through nutritionists and alternative pain therapy including testing etc.
3. The real SCIENCE of what is ACTUALLY going on in YOUR body!
A hybrid approach of each?
The FINAL say is between the patient and an independent body set up to help you understand each sector. Like CAB, PASS etc. But informed in YOUR case so YOU are not just a number but they’re an actual Advocate for you.
There are people who undoubtedly need the chronic pain service and that is NOT in dispute here. I have needed Acute Pain Services for over a decade but had Chronic Pain ENFORCED upon me to, admittedly a very RARE (and thankfully) an UNLIKELY TO EVER HAPPEN AGAIN with very severe consequences.
I know I am simply an ‘unfortunate person’ but I’m no Martyr and I DO NOT INTEND ON DYING TO MAKE A CAUSE HAPPEN! My children have suffered severely. I always said I’d die for my children now? I must do something MUCH more difficult & LIVE! Ensuring this chemical pushing system is a rotting rotation on humanity just to keep the numbers down.
(Edited out a bit can send pm another time)
I’ve made a ‘rough draft’ with expenses info from Drs & specialists I know/have worked with in my capacity as a drama-therapist, after training in occupational therapy and becoming an actress/presenter then going on to start up our own film company as my husband and I met on a film set.
Enough waffle! 😆
Hopefully sites like this will help snowball this idea into action so we and future generations can and will all benefit by Taking our Life back!
I’ll let you know how the journey is going.
Thank You from one Warrior to Another!
With a salute to all Warriors out there, Stay Strong!
Love Kx
Hi, I don't know the details of your story but I do have similar experience with the nhs. The truth is that they don't understand what causes IBS, so they try to mask the symptoms with medication rather than digging deeper to find the root cause/s. I've had some success working with a private nutritional therapist - not cheap but they can offer much greater insight and also test for things that the nhs don't. Make sure you find one who's well qualified though. I wish you lots of luck!!
I am sorry that this is not an answer to your problem, or even your question, but I have been told several times by my GP that the medical profession is trained to treat the SYMPTOMS, they do not try to find the cause!! I think, in a twisted sort of way, that answers a lot of questions in terms of often complete ignorance and indifference by the medical profession. My GP is VERY quick to brush my pain under the carpet having labelled it purely 'psychological'! She is 100% wrong ad I am about to prove it (with the help of an enlightened Senior Consultant..BUT,,, it has taken me 3 and half years to get this stage. Basically, the vast majority (and I say this from many years experience in the NHSNOT as a patient) medical professionals have been trained to eliminate a prescribed list of possible causes (box-ticking) and all have been ticked and none are the cause...the symptoms are treated, yet the cause remains a mystery. It's quicker and cheaper their way for the NHS though. Don't give up... persevere!
My view is that you have to want to help yourself as the doctors can only do so much for you but its frustrating when they can help but won't though.
Sad to say that my experience of the NHS has also been poor. My symptoms are nowhere near as bad as yours yet they still cause me much distress and the NHS was not interested until I paid for private tests that diagnosed my problem and wrote formally to the NHS to complain as my GI consultant had refused to do this test when I asked for it. That got me an appointment with another GI consultant who apologized and has offered to help to get to the root cause of my problems. This was a welcome letter but the range of tests/treatments that the NHS can undertake is so limited that i'm not holding my breath. NICE is not very nice at all. I have used a functional nutritional therapist and a private Harley St doctor who my therapist works closely with when medical grade prescriptions, intervention etc is necessary. There are also private GI specialists at Spire, Nuffield etc who could probably help you - the cost is a shocker but I don't regret spending my annual holiday money on the help that I've received to date privately as otherwise I would have suffered 'IBS' for the rest of my life whereas I actually have a treatable condition. Good luck to you!
My 2 Pence - Maybe this can help you? Maybe you can help me?
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