On the 21st of April, I finally headed to the hospital for an appointment that has been over a year in the making. For many of us living with inflammatory bowel disease (IBD), being “discharged” from a gastroenterology department while still having symptoms feels impossible. Yet, after 17 years under their care, that is exactly what happened to me last year. It took a team of three (my therapist, my mum, and me) and multiple phone calls just to get back into the system, only to be told there was an 11-month wait.

When I arrived, I expected to see the consultant whose name was on my letter. Instead, I was seen by a Registrar, who is a senior doctor, completing their specialist training, but not yet a Consultant. These doctors often see patients in clinics on behalf of the Lead Consultant, and in my experience, they aren’t always able to make final decisions on complex cases. So I immediately felt like I wasn’t being taken seriously.

The frustration of being unheard (again)

I spent most of the appointment trying to make him believe me. When I talk about intestinal blockages and strictures, I am speaking from years of lived experience. Yet, he suggested that my medications might simply be making me constipated. I have a high-output ileostomy; for those who don’t live the “bag life,” that means my output is naturally fluid. Constipation in the traditional sense is physically impossible for my anatomy, and certainly cannot be confused with my bowel obstructions!

As I tried to explain my history, he repeatedly said, “Yes, yes, yes” while staring at the computer. He wasn’t listening – he was just waiting for his turn to speak. He even pointed at a small, one – centimetre scar on my hip from an old drain and asked, “Is that where your old stoma was?” When a doctor cannot distinguish between a drain site on a hip and a stoma site, it’s hard to have any faith in their clinical judgment. It felt like I was braving a “big talk” where the other person wasn’t even in the room.

He mentioned potentially doing a small bowel barium MRI – a Magnetic Resonance Imaging scan where you drink a contrast fluid (barium) so the doctors can see exactly how things are moving through. This is the last test I had before being discharged, and nothing was identified from it. I said that felt pointless, because it hadn’t shown anything last time.

He said the “ideal” would be to do a CT scan (a Computed Tomography scan, which uses X-rays to create detailed 3D images of the body) whilst the blockage was actually in progress, which I informed him wouldn’t happen because I wouldn’t go to A&E.

The “Not good enough” thread

My mum was there with me, and she suggested that we at least put a plan in place for when things go wrong. We discussed the possibility of a formal letter that would ensure I get a prompt CT Scan if I turn up at A&E with an obstruction. I’ve been to A&E only once since I was diagnosed in 2007, and I was just left sitting waiting in A&E for 5 hours, at which point the obstruction passed and I went home to rehydrate. He said it was “definitely something we could look at,” but because he wasn’t the lead consultant, he couldn’t actually offer it there and then. He couldn’t actually offer anything there and then, because he didn’t have the authority. He had to go away and discuss it with his superior.

I left feeling unheard, invalidated, and not at all hopeful.

The thought of A&E triggers my Medical PTSD. It isn’t just the long waits or the memories of being ignored. When I’ve been in the hospital before, the nurses weren’t “too busy” to see to me. They were free – chatting or eating meals at the nurses’ station while I was left waiting, sometimes in dire need of help, such as covered in my own waste following surgery, too weak to even sit myself up. But the PTSD is mainly due to the hospital repeatedly proving to be dangerous for me.

• I nearly died from sepsis because a drain wasn’t placed after surgery.
• I nearly died from a morphine overdose because of an incorrect line.
• Another time, I was left to believe my life was in danger, merely due to poor communication.

Perhaps they are just broken by the system itself, but as a patient, that indifference fed into a “not good enough” thread that has been apparent throughout my life. When you’ve nearly died twice because of hospital errors, that feeling of being unimportant is a survival instinct.

Moving forward

A few days after the appointment, I received a letter for a Small Bowel Barium MRI. Initially, the appointment was set for the end of May. A few days later, I had a phone call moving the scan to this Saturday.

I’m going into this weekend hoping (but doubting) that this MRI provides the evidence needed. I want the problem identified before it becomes an emergency. I want the chance to prepare my nervous system and be as healthy as I can be if surgery ultimately ends up being the only way forward.

If you’ve ever felt like your voice was being drowned out by a “yes, yes,” know that I see you. We have to keep advocating, even when the system makes us feel small. 💕✨