Short update: Enduring a slew of tests

I have been very unmotivated to Blog...partly health, partly just lack of desire to share. Almost like I just want to "get through" stuff at the moment..that's where my energy is.

So a quick point-form update and a warning I may not blog again for a while.

Went to the gastroenterologist Wed.

Due to my long period w/o being able to eat, he scheduled my scopes (upper and colonoscopy) for Friday.

The upper scope was fine pain-wise, but the colonoscopy was incredibly painful the whole way through. I remember crying with the excruciating pain and asking them to please stop. I don't think they gave me enough drug, honestly.

He came out afterwards and I was sure there was something wrong with my colon however,

he found no inflammation and only a small polyp which he removed. He thinks it's probably spastic colon (IBS) which is the exact diagnosis I DIDN'T want....another syndrome, yay. However, there's a chance it could be microscopic colitis...we'll wait for the biopsies.

He said the pain of the scope was in part due to the fact that I have a narrow and very twisted colon. Still, I had a colonoscopy 10 years ago and it didn't hurt at all.

I do have multiple (he said a few) small ulcers in my stomach and he said the stomach itself was mildly inflamed. So for now I'm on a drug for ulcers which will hopefully heal them and help with some of the pain when eating. I didn't notice him do any testing for H. Pyroli which is odd as that's the bacteria that usually causes ulcers. It can be treated with antibiotics.

I see my specialist Tues. and I'll ask her to do the H. Pyroli test. I'm so sick of medical appointments. I'm hoping with this drug I can start eating solids again soon.

I meet with the Gastro again mid April to follow up on scopes, biopsies, and blood work.

One good thing yesterday was that he ordered IV fluids for me after the scopes. For some reason this seems to keep me from having as severe a crash. (Probably due to my OI). I slept 12 hours last night and am ready for a nap again...but the M.E. symptoms aren't near as bad as they could be.

To all my blogger friends, take care and I apologize for my recent lack of blog reading and writing.

I'm Shrinking

Well, the gut infection is pretty much over. It lasted 7 or 8 days.

However, it's been two weeks now and I'm still having trouble eating solids due to pain (which is much improved but still there) and major grumbling and rumbling every time I eat. But I am eating. Smoothies and some blended soups. I just tried a yogurt smoothie Popsicle (with probiotics added) - WOW!! that was good. I highly recommend them to anyone who's having major gut issues.

Last Tues. I had my tele health appointment with my specialist finally after 6 mo waiting. I was determined not to talk about my recent gut issues because I didn't want my M.E. agenda usurped. Unfortunately my gut issues got dragged in and ended up taking up more than half the appointment.

She asked my NP to do a bunch more blood work to send along to my appointment with the Gastroenterologist in a week and a half. She's on a kick that it might be Giardia related due to my years in the woods and the recent research out of Norway showing Giardia outbreaks as a precursor to M.E.

I tried to remind her that I started with a severe Mono infection, but I guess it doesn't hurt to investigate.

I also got a lecture on pacing and resting. The last thing I need is to feel like my ill health is my fault, like I somehow brought this terrible year on myself. I do nothing with my life but rest it seems. If rest was a cure, it would have worked by now. (That being said, I can occasionally overdo it on my good days).

She was going to look into some Florinef for me to perhaps help with my terrible POTS/OI symptoms. I figure my quality of life would improve drastically if I could sit up in the mornings. Mornings are my least sick time of day M.E.-wise but my worst POTS wise. I would love to be able to take those hours back somehow.

I've now lost 10 lbs in two weeks. I'm shrinking. While my gut is much improved, I've developed a bit of fear around eating due to the amount of pain I was in for 10 days. I'm trying to remind myself to try, but last night I ate a little corn pasta and had 2 hours of minor pain, but enough to keep me from falling asleep and retreat to the liquid diet for a bit longer.

Both the emergency room Doc. and my specialist said if I'm keeping lots of fluids down and the output isn't drastic, it's OK for the time being.

I see the Gastro in just over a week and my specialist again in two weeks (she wanted to hear the follow up from the Gastro and check in on me).

I still haven't heard what the tests at the hospital showed, but my NP promised that if there was anything she would call.

My "gut" (haha) tells me that it was just the stomach virus going around that set off a flare of inflammation of some kind (colitis?). My immune system just doesn't seem to be able to manage these stomach viruses. I had the same problem (although less severe) when I got stomach flu at the end of December.