Frustrated and desperate - how can I get diagnosed properly?

Hi everyone! I’m looking for some advice after lurking in the shadows here for a while. I’m in such a pickle with all of this and something’s got to give. Please help me figure out the next move in this awful game of chess!🙏😩

So, I’ve been an ‘ill’ person my whole life - 25 years old and kidney stones, frequent pains and infections, always have mouth ulcers, multiple episodes of sepsis etc. since a young age. After sussing out that people don’t generally like ‘ill’ people, I quickly learned to hide it, and between catastrophic incidents like kidney blockages, I tried to keep my head down and pretend I was fine.

In January 2023, I began to feel generally worse and registered with a GP but my bloods were okay so I focused on treating things I’d been diagnosed with in childhood like Athsma, and getting seen by the urology team. I experienced my first abdominal symptoms in March 2023, which was constipation followed by melena. At the time I didn’t know it was blood, so I sought help from my GP who told me to attend A&E if the pain and urgency were that severe. The local A&E blamed high calcium and kidney pain and sent me home.

I kept contacting my GP who eventually told me they couldn’t do anything else for me and I quickly switched practices. I returned to A&E to discover the black stool was an indication of bleeding, had a blood transfusion and a failed endoscopy (looking for ulcers in the upper part of the GI tract) and then was discharged. I went back to my GP a week or so later with a leathery mouth rash (lichen) and was told I may have oesophageal cancer and a second endoscopy was scheduled for a couple of days later. They did this urgently and successfully with no peptic ulcers found and all biopsies were clear.

Only then did doctors start looking at my lower GI tract and I was told I’d need a colonoscopy under general anaesthetic as other scans showed too much swelling for me to be awake - they said it would have been torture🤢. I was re-admitted via A&E several times, either from loosing consciousness, severe pain and vomitting, shock, bloody vomit and stool or atrial fibrillation. They began to suspect UC when I was given oral antibiotics for a kidney infection and I had a terrible reaction like never before. They kept me on the antibiotics whilst in hospital and only when I researched more about UC did I insist we stop them - which helped and I was able to go home. Still bleeding, but not as aggressively unwell.

In December 2023, I hadn’t eaten solids for over three months and the resulting heart problems and nutritional issues were worsening. The doctors were telling me I wouldn’t be able to have a colonoscopy until late 2024/early 2025, as I required a general anaesthetic, so I decided to go private and booked an appointment with a Gastroenterologist. My GP had written a letter explaining I needed a colonoscopy under GA but the consultant insisted a sigmoidoscopy under dual sedation would suffice. He forced me to have an enema beforehand, which resulted in a lot of blood loss and pain. The scope was unsuccessful and I was down £3000 and back at square one. Apparently there was visible ulceration and inflammation but as I wasn’t fully asleep, I withdrew consent before biopsies could be taken.

I scheduled a second private consult with a gastro surgeon and he agreed to do the full colonoscopy with a GA, informing me that the first consultant wouldn’t have been able/allowed to use general anaesthetic, hence his recommendation for the sigmoidoscopy. He didn’t disclose this himself, I assume because he wanted the money? He really made it seem like a genuine recommendation, with my best interest at heart.

In between these scheduled appointments were countless trips to A&E and I ended up having an MR scan, CT scans and more tests in the ED. They all revealed pancolitis, narrowing and wall thickening, etc. my calprotectin was very elevated (only tested once) and infection was ruled out from a sample provided in August 2023.

The MR scan showing severe inflammation was done within two weeks or so of the colonoscopy - which was completely unremarkable. (In my opinion, having a set date for the second procedure and knowing I would be asleep for this one, that I wouldn’t need an enema and that this could be the key to getting better, I stopped panicking about not being able to get any help and I even felt my symptoms improving as I approached the procedure. Knowing I couldn’t afford unlimited private procedures, I contacted the surgeon and he advised the ulcers would still be present as it’d been observed on the scan in A&E and to go ahead with the proposed colonoscopy.)

In all of this time, I didn’t see a gastroenterologist under the NHS - everything was dealt with by the ED and my GP. Every time I was on a ward, they’d just pass a message on but never come to see me in person. I live in a big UK city where the NHS and their gastro services are drowning, so I’m one in a million here.

I had my first appointment with an NHS specialist in February 2024 and he looked at everything I asked him to, felt my stomach, and we spoke in depth about things, which made me pretty emotional. He confirmed that pancolitis is present and that infection has been ruled out, but noted that no biopsies were positive so I couldn’t get a concrete diagnosis. He prescribed mesalasine (Pentasa) anyway and asked the GP to continue with it if helpful, with the aim to review me at some point in the future and do a hydrogen breath test (neither have been booked yet). It didn’t help much but did prompt the GP to give me a short course of Prednisolone when I phoned again in pain. The specialist I saw wrote a letter to my GP advising they continue with the Pentasa but stating it’s “unlikely to be UC” so the GP was reluctant to prescribe anything else following this.

As I haven’t been able to work much, I’ve had to move to my parents, which is a four hour drive from my healthcare team. They’ve agreed to keep me under their care and do everything by phone, so I have temporarily registered with a GP near my parents. However, the local GP surgery have refused to see me because the symptoms are too specialised so they advised I attend A&E. I’m reluctant to attend unless I’m in urgent need and feel I’m at serious risk, which hasn’t happened since moving here over the past week or so. Partly because that’s an A&E’s intended purpose and partly because I’m so traumatised by it all I’ll avoid it until it’s really necessary.

I feel so frustrated because my research tells me I’ve had textbook symptoms for quite some time but because the biopsies were done in a moment of calm, they didn’t reveal anything? 🤷‍♀️ I’ve been told by gastro doctors a few times that anything is possible with IBD and so this could be the case?🤯

I’m desperate to get some advice on what to do next; I’ve tried contacting the local IBD nurses in my city and near my parents’ with no response.

How can I get a diagnosis so I can access some treatment? I’d be happy to look at moving to another country to get help or paying for private care again - I just have no clue and no faith in the medical establishment left! 🙏🤯

Thank you to anyone who makes it to this point - I did try to condense but a year is a really long time 😅🥲🤯😖