A Diagnosis?

I wrote a little while ago about my ongoing health issues, and wanted to do a brief follow up report on where things stand.

I got a colonoscopy and endoscopy done in the end of August. Lots of odds and ends issues were found, including a polyp in my stomach that would have turned into stomach cancer had we not caught it and removed it. So, get your routine screenings done!!! My polyp friend was found during the endoscopy which is unusual – usually they’re found during colonoscopies. Colon cancer and of course stomach cancer are killers. If you’re over the recommended age, get your colonoscopy done. Just… do it. Poop yourself inside out for a Good Cause. It makes for a really crappy day of prep (see what I did there?) but it’s totally worth it.

After 7 biopsies, only one came back with anything truly substantial, and it said I have proctitis. Rectal inflammation. I had petechiae in my colon too, indicating something in my immune system is attacking my intestines. That is what we had suspected for a long long time, but this confirmed it.

I also waited 4 months from referral to get into a rheumatology practice, which is apparently a miraculously short waiting period around here. There’s a massive shortage of rheumatologists. And that’s where the pieces are starting to come together.

The woman I saw at the rheumatologist is great. She did a thorough physical exam, asked me tons of weird questions, and came to two conclusions: 1) I have fibromyalgia, which my husband and I have suspected for years, and 2) I have psoriatic arthritis, which is attacking my intestines, my eyes, and my joints. X-rays confirmed her suspicions enough to move forward with treatment.

Will that diagnosis hold? I don’t honestly know. Autoimmune diseases are notoriously difficult to diagnose and treat. But for now that’s what it looks like and we are moving forward with treatment.

Interestingly, one of the front line treatments for psoriatic arthritis is the medication my old GP put me on 12 or so years ago, which worked great for ages until supply problems cut me off. The really wonderful news is that the rheumatologist is a part of Upstate Medical University, which as a massive research facility is big enough and has enough clout to get its hands on sulfasalazine, which is the medication I’ve been unable to get from smaller pharmacies. So in a small dose of irony, I’m just back on my old medication after a whole lot of testing and enough x-rays to glow in the dark, but with some more information backing the prescription.

Will I also need a biological like Humira added to my regimen? Probably. But first we are going to see what happens to all my inflammation and pain and fatigue once I’m back on the working dose of sulfasalazine for a while. It’s tricky in that some of my pain and fatigue are actually the fibromyalgia. But the inflammation – markers for which are sky high at the moment – is the critical marker for monitoring how the psoriatic arthritis responds to the sulfasalazine. If my x-rays show improvement, and my WBC and ESR and calprotectin go back down with just sulfasalazine, that would be wonderful.

The upshot of all of this? I’m feeling decent right now just out of sheer coincidence. Flare ups happen and suck, but I appear to be on the back side of one fatigue-wise at the moment. And I’m feeling hopeful that maybe we’ve figured out what’s been going on for the last 14 years. And I’m feeling hopeful that I’ve got a team who will figure out good treatment options. AND I feel like my team will adapt and follow the evidence if it turns out psoriatic arthritis isn’t the right diagnosis and we need to do more digging.

What’s it like to have a diagnosis after FOURTEEN DAMN YEARS?!? I feel seen and heard and believed. It’s the last one that is so important. I’ve been dismissed as crazy or hysterical or hypochondriac for so long, that to have an actual team of not one but THREE doctors (GP, gastroenterologist, and rheumatologist) believe me is… making me feel sane. It gets to you, the disbelief. Despite my knowing my symptoms were real, I spent 14 years second guessing myself. I feel like I can breathe a little easier and trust myself a little more now.

And I’m so hopeful that I’ll start feeling better. There isn’t really treatment for fibromyalgia, just management. But if my intestines get better and my joints get better and my fatigue gets better, then dude. I can handle the lingering symptoms of fibromyalgia. I’ve been through worse.