To be upset with this diagnosis **MNHQ adding content warning for descriptions**

In your situation I would speak to the GP about what you think is going on and hopefully they can discuss and elevate your worries around an alternative diagnosis

Could your GP refer you to a different hospital?

So on an ongoing basis you have chronic diarrhoea and pain?

is there bloating at night? How often is the diarrhoea?

I personally would run a private stool test - it’s expensive - but even just the bit to check for parasites would be helpful

You say you have autoimmune diseases, is it possible you have Coeliac disease too? Low iron is common if you have this.

I had unexplained pain for 7 years and kept having scans, an MRI and returning to the see the doctor. I was told for 7 years that everything was fine. I ended up getting a private blood test (I live abroad) for gluten antibodies and was then referred to a specialist. I was then finally diagnosed and a few weeks after giving up gluten and doing the Autoimmune Protocol Diet (AIP) the pain disappeared.

I highly recommend the AIP diet for 30-90 days to heal your gut and find out what sensitivities you have. If you still have problems after this diet then keep going back to the doctor. Listen to your instinct. I KNEW that despite being told I was ok that I actually wasn't and I was right.

A sigmoidoscopy does not go high enough in the bowel I don’t think - ring 111 and say you are not happy (my local hospital told me to tell my cleaner to do this when her gp was not referring her son for specialise care with persistent vommiting)
also find a good colon irrigation specialist and ring them - colon irrigation resolved my ibs. I also have ceoliacs

Sorry I meant you put I think you need an endoscopy

Gosh sorry to early! Colonscopy not endoscopy. Sigmoidoscopy and colonscopy are not the same thing exactly

I am was diagnosed with ceoliacs after having low iron after an endoscopy - endoscopy can actually check for ceoliacs better than blood test but double check they took stomach lining sample to test for ceoliacs as a first step.

Could you have endometriosis? I had similar symptoms when it wasn't controlled by the pill.

I think your GP can apply to the CCG (or current equivalent) for special permission to refer you out of area, so you could get a second opinion. You could also write to your MP.

I have ulcerative colitis and when it's bad it sounds like what you have experienced, I take asacol and it gets rid of the symptoms

Ulcerative colitis is an autoimmune disease btw

I feel for you..I think doctors often focus too much on "blood tests normal"and not enough on what the actual.patient is saying.

I spent 5 years going backwards and forwards to GPs saying i was not well at all being breezily assured that my "blood tests were normal". Finally an optician spotted my (very visible) ptosis and realised I might have Myasthenia Gravis. My blood tests for it were clear but I had a decent GP.for once and she still referred me to neurology. I tested positive for Myasthenia with the single fibre EMG test but all my blood tests are clear - I have been diagnosed with seronegative Myasthenia Gravis. so it really frustrates me how much reliance is placed on tests that just don't tell the whole story.

You definitely deserve further investigations and support and I really hope you get answers soon it sounds incredibly tough

Sounds more like IBD to me. A sigmoidoscopy only covers the last loop of the bowel- you need a colonoscopy and / or endoscopy. If the blood is black there is bleeding higher up the tract. This should be checked out esp if you have other immune disorders

Sounds like IBD to me too. I was diagnosed with Crohns after much back and forwards. Dismissed as IBS multiple times despite me actually saying I believed it was IBD. Don't stop trying, see another GP for a second option.

IBS here too but was lucky enough to see a specialist who tested for everything else. When the consultant diagnosed he was very empathetic to explain it is not a great diagnosis as there are very limited treatments and I would just have to learn to live with it. I have been able to by relearning the diet that works for me. Not all high fodmaps set me off but some Def do. The flare ups are awful though, sometimes last for weeks and do stop you enjoying life. Lots of people (and doctors) have a bit of an 'oh it's just IBS' without realising how debilitating it can be. I would push to see a specialist to do a full scoping of your LI at least. If it is 'just' IBS. You have my sympathies.

I had ibs for years. It’s awful. Painful and embarrassing. I tried elimination diets, medication, hypnotherapy. Totally unrelated to the problem and in a bid to lose weight I did an extreme high protein, low fat and low carb diet for 6 weeks. (I lost half a stone) but more importantly my ibs completely cleared up and has never returned. I still don’t know if the two were related but I can eat anything now without any side effects. It has changed my life.

Gaslighting in medicine is rife for women and our problems.

Get yourself to a nutritionist or naturopath that can actually help. It’s 100% something you are eating.

Hello OP. I'm sorry your suffering g this shit show (pun intended).

This link has useful info re your rights.

www.ageuk.org.uk/information-advice/health-wellbeing/health-services/healthcare-rights/

You say you can't be referred elsewhere but I think that's worth looking at again - asking your gp to refer you to a different hospital.

I've got IBD and find it frankly shocking that you've not had a colonoscopy. That's minimum standard for investigating bowel bleeds.

Also look at the Crohns and colitis website for info on diagnostic tests. It's good and clear. You may not have either of those but your symptoms could suggest it. They also provide a helpline which might be useful. Diagnosis of Crohns/colitis can be difficult and needs perseverance.

So, different hospital , be clued up to requests specific tests and get advice from Crohns and colitis.

I hope you get it sorted.

Don't have colonic irrigation.

Another one who thinks you need to be properly investigated for IBD (ulcerative colitis or crohns disease). It would be worth looking up the symptoms of these and seeing how many align - there can be non-bowel symptoms too.

Keep a symptom diary. Track every symptoms and bowel motion, including a description of your stools and any pain/blood etc. Symptoms diaries are invaluable. Include diet.

You cod have a look at symptom tracker apps, I've not used it but Bearable is one to check out.

Request copies of blood test results from your gp and check what they've tested - have they checked inflammatory markers?

Coeliac disease is worth ruling out but I'm inclined to think your low iron is down to bleeding from the bowel instead.

Do your symptoms fluctuate with your menstrual cycle? I have ulcerative colitis and symptoms can be worse as I approach my period.

Is it possible for you to save up for a private colonoscopy with biopsies? If IBS is covered by private insurers such as Bupa, that might give you a way in to have further investigations covered by private insurance - get seen for IBS and then have them escalate it to investigate for IBD.

Trying to think of ways to get the hospital to accept your referral...You'll need more evidence but you could also use the complaints process.

If/when you make further approaches for a referral, treat it as a fresh thing and don't bring up past refusals. Your symptom diary will provide accurate information and can be used to show you're not an hysterical woman.

my hubby is similar,try goats mik it helps him a lot, push for more tests, its not a great live always in the loo good luck

Irritating and frustrating when you feel you've been fobbed off. Are you under a consultant. Have you been referred? Insist Gp does. It needs proper investigation. Could it be diverticulitis?

Don't see a naturopath - waste of money

Dont have a colonic irrigation - completely a waste of money and dangerous

Consider a private colonoscopy and biopsies. Not ideal but it is where the NHS is

If stool tests are normal it's very unlikely to be IBD