Fear of Being Discharged From My Gastroenterologist

I recently had a conversation with my gastroenterologist that really put the fear of the universe in me. I’ve had the same gastroenterologist since I was diagnosed with ulcerative colitis in 2007. I feel she knows me well, and she’s been on the journey with me. She’s seen me at my worst and at my best. It’s been my experience that if I’m struggling to get anywhere with primary care physicians, like referrals, I can reach out to her, and she just gets things done.

It feels like she’s the only one I can really rely on in my entire healthcare team. She knows, and more importantly, understands, what my body has been through and what impact that has on everything else.

Intestinal blockages have been getting worse

I’d contacted her PA for an appointment because my blockages have increased in frequency and severity. This is not something new to me. I’ve had seven bowel surgeries in total. I’ve had scar tissue and adhesions build up before, causing strictures (narrowed areas) in my intestine that have slowly got worse and limited the food I can eat.

So, I feel like I recognise where I am now. Not that I know how to move forward, as further surgery is complicated and will only create new scar tissue that may do the same thing anyway. At the same time, I don’t feel ready to resign myself to a future filled with low residue foods only…

Barium meal study

Anyway, the appointment came around and she didn’t seem to realise I’d requested it and was under the impression it was a general annual review. I told her where I’m at and said I think I’m at the point where we need to have a look at what’s going on in there. She said she would order a barium meal study, which suited me fine.

But then, she followed up with “if everything comes back clear then I think it’s time to discharge you.” I had a lot going on in my life at the time, so I was already overwhelmed.

Usually, I’d have fought my corner, but nothing came to me.

The fear of being discharged

The thought of not having a gastro is petrifying. I get what she’s saying. I had ulcerative colitis and my colon is gone, so to her mind, I no longer need care for my ulcerative colitis. I see that. However, in the past, and with previous strictures, they were identified because I reported the symptoms to her and she ordered tests. There’s a lot of panic and a lot of thoughts flying around in my head.

The first scenario says, what if the barium meal X-rays don’t show anything? I know of at least three separate locations food gets stuck. The blockages ARE happening and they ARE a problem. I don’t know why they wouldn’t be seen, but still, what if? It wouldn’t be the first time tests didn’t accurately show what’s going on; in my experience and many others in the community! Then I’ll be discharged from her care. Then what will I do if/when they get worse, as they have been doing and have in the past?

When it happened before, by the time they were identified I needed emergency surgery, so I think there’s probably some underlying fears rooted there, too.

This leads to the second scenario. Because I’ve had my gastro since I was diagnosed, this has meant that when issues have arisen, I've been able to speak to her and organise diagnostics etc. fairly easily. If I get discharged, when/if I experience issues in the future, I'll have to see a GP in primary care. My experiences with primary care physicians have been awful.

I don’t have a family doctor. My GP practice is full of physicians “covering”. I always see a stranger, who not only doesn’t know and understand my history, but also doesn’t understand me as a person either. They don’t know that if I am there telling them about a symptom or symptoms, I’m in a bad way. I wouldn’t go otherwise because they’re generally useless. I have zero faith in them because all they ever seem to do is give me reasons to lose it.

So, it’s always a start from the beginning situation. I have to explain all of my conditions, medications, and what that means to the current situation, and I have to hope they understand it all. They often don’t. It’s exhausting to think about, never mind having to action it!

Waiting for results

As you can see, I got myself in quite the fluster. I've made up scenarios and got stressed about them, with absolutely no foundational knowledge to do so. Logically, there's no reason to believe the small bowel study won't be accurate.

All I can do at this point is hope and wait.