2024_09_07 Surgery notes suggest a surprising diagnosis

I had surgery last month: An exploratory endoscopy to investigate these brief, sporadic abdominal pains I’ve been having the last ~four months. The surgeon, my gynecologist, expected to see a recurrence of the endometriosis she’d cleaned up during my hysterectomy a couple years ago. There was also a slight possibility that my ovaries might be involved, and I told her to remove them at the slightest provocation. I was really hoping there’d be something to biopsy.


The result was:

No endometriosis.

Ovaries look fine.

Creeping Fat in the bowel, noticed throughout.

Lots of scar tissue, some of which she cleaned up (do they biopsy that?).




So I have an appointment next month with a gastroenterologist.

(sigh, more bowel prep…)




Creeping Fat is pathognomonic for Crohn’s Disease, so I’ve read (watch me be an exception). There are at least five types of Crohn’s Disease, some worse than others.

(I cannot concentrate…)


It’s interesting to note that Crohn’s can cause:

• Retro orbital pain (bl). This is the initial symptom that convinced me there was something to be seen on head imaging. In the beginning there were brief, intense instances; it recurred in milder form, or in variations like a prolonged sensation of heat (migraine?). Seemingly related is a stinging of the skin over the inferior orbital rim (bl)– neurological, as it only presents with stress (heat, frustration, prolonged effort of concentration), and which I believe may be caused by irritation of trigeminal nerve (herpes zoster?… anyway, that skin is innervated by trigeminal>maxillary (2nd) branch>infraorbital branch).
  
  
• Clonus (ankles, bl). This is the more recent symptom that convinced me (along with signs of progressive central ataxia– although maybe cervicogenic) that I was dealing with a movement disorder, maybe MS… However, movement disorder is a comorbidity of Crohn’s or other Inflammatory Bowel Disease, so it’s not off the table.

It also ties in with GERD, (which ties in with) sleep apnea, and so much other stuff…

I may be on the verge of acquiring an All-Explaining Primary Diagnosis, like I’d hoped for; like perhaps everyone with a chronic mystery illness hopes for.

But I’m a little disappointed in that I like looking at the skull base, not poop-filled intestines; structure, not squish.




Questions that would remain if I do have Crohn’s:

• What about the cervical stenosis and arm pain? (I have a neuro spine appointment set to look into that.) 
  
  
• What more can I glean from the Onset Event– a very brief unilateral visual obscuration the day after a dramatic episode of heat exhaustion during prolonged neck strain–following which a cascade of symptoms have flared, subsided and recurred for the last six years?
  
  
• What are the circles-with-dots on my MRIs/ do I have neurocysticercosis?
  
  
• Is any of this exacerbated/complicated by my “L”JHS? (That’s “limited” joint hypermobility syndrome. I don’t buy the “limited”, as I’d grown stiff by time I was diagnosed– and almost didn’t get a diagnosis at all as the geneticist seemed to be preoccupied with finding useful Ehlers Danlos study subjects such as my sibling.) 
  
  
• And that perennial stumper: What questions should I be asking, in what order?