Gastroenterologist appointment – follow up July 2017

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Before the hysterectomy from hell, I had a gastroscopy.  I knew on the day that she found an ulcer and have been taking medication to reduce the acid in my stomach and allow it to heal ever since.

She also took biopsies on the day, to find the cause of the inflammation she saw, and to look for eosinophils. My last gastroscopy showed eosinophils throughout my gastrointestinal tract, not just my oesophagus.  So she concluded I had more going on that Eosinophilic Esophagitis, and would need systemic treatment.

She said my results were very interesting, and very good.  No eosinophils anywhere!

Most awesome!  I was ready to thank her and leave, but she stopped me.

No, it doesn’t mean that I no longer have Eosinophilic Esophagitis.  It means that steroids effectively suppress the disease.  Given that I’m on oral steroids and likely to be forever, this is good news, because if my steroid dose for rheumatoid arthritis and ankylosing spondylitis also suppressed my Eosinophilic Esophagitis, it’s killing two birds with one stone.  Very efficient.

I was on 12mg of prednisone on the day of the gastroscopy, so we know that 12mg is enough.  She dilated my oesophagus on the day, I haven’t symptoms since, and I have been eating whatever I want.  Bliss!  After 18 months of very strict dietary restrictions (no dairy, no grains, no corn, no meat, no soy I can’t even remember what else) it is bliss to be able to grab a cheese sandwich when I’m hungry.  Unless you’ve done the top 8 elimination diet for several months, you have no idea.

There are two schools of thought with Eosinophilic Esophagitis – treat with medication or treat with diet.  Finding dietary triggers can be difficult, however, and for me, even with a restrictive diet I still had symptoms to the extent that I have extensive strictures and required another dilatation. Some people’s disease is environmental – airborne allergens.  In that case, the only option is steroids, usually swallowed in a slurry.  In more severe cases, prednisone is used.  I’m that more severe case, but steroids work well.

My immunologist was a devotee of diet therapy, and wanted me to continue with the restrictive diet for the rest of my life.  My gastroenterologist feels that’s unrealistic, unnecessarily harsh, especially when medication is more effective. She said if I had honestly been sticking to the diet (I had) then needing my oesophagus dilated twice in a year meant diet therapy wasn’t working.  She’s happy for me to continue with steroids, and if I have symptoms when I get down to 10mg, she’ll prescribe the steroid slurry.  And if that doesn’t work, I’ll need regular gastroscopies and dilatations.  Not ideal, but we’ll cross that bridge when we get there.

And in the meantime, enjoy whatever food I like.

Freaking awesome.  No more restrictive diet.  The diet was particularly hard for me because my son is an extremely picky eater (Asperger’s) and I have a history of anorexia and bulimia.  This means I can stick a diet like no one’s business, and I won’t cheat, but it also means that psychologically it’s fraught.  While I overcame my eating disorders many years ago, if I start restricting food, it’s very easy to fall back into old habits and thought patterns.  So not having to focus so much on food is a very good thing,

Now for the bad news.  She needs to review my ulcer, which means another gastroscopy.  Which means being sedated.  It’s not anaesthetic, but it’s being rendered unconscious all the same.

She told me she’d book me in for December and I just said “Nope” without thinking.

Unconscious. Vulnerable.  Nope.

Cold sweat.

She was very kind, but firm.  I need to have the gastroscopy.  I asked her if I could be awake. She said it would be possible, but very, very uncomfortable for me.  I said I don’t care.  She said we’d book it in and discuss it.

I know I’m being nutty, but I don’t want to be sedated.  Ever.

She changed the subject.  Last time we talked about ankylosing spondylitis, its relationship to inflammatory bowel disease, and the mild inflammation she’d seen at my last colonoscopy.  She asked what my current rheumatological plan was.

She agreed that NSIADs were likely a no-go zone for me, and agreed with the TNF inhibitor plan, and just to confuse things, she put in her vote for infliximab (remicade).   She uses it often, and very successfully for IBD.

I asked her if her patients gained weight.  She laughed and said no, not in her experience.

I told her both Humira and Enbrel caused considerable weight gain, and I didn’t want that again.  She agreed, weight gain is a very unwelcome side effect, but there is really only one way to find out.

True.  Sigh.

Then she asked me about my bone density, another problem she flagged.  My bone density results were 7 and 4 standard deviations above the norm (spine and hip respectively).  Extremely unusual and it turns out not a good thing.  A result like that is anomalous and indicates a pathological process.  She said my bones are likely extremely brittle and sclerotic, and I’m a fracture waiting to happen. She did some searches and said a form of osteopetrosis was her best guess, but its not her specialty and she didn’t know which specialist would manage that.  And there isn’t really a treatment either.  She recommended I don’t jump off anything high, or go skiing any time soon.

And that’s pretty much it.  I have a few months to get used to the idea of being sedated.  It’s not the same as being anaesthetised, but I don’t want to do it, all the same.  It’s a short, simple, risk free sedation, but that isn’t the point. The point is being unconscious, vulnerable and having no control.  The point is trusting the medical staff.  Not my strong suit right now.

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