At Least I've Gotten One Answer!

[Razzyirt]

Well I got one official diagnosis this morning...it may not have been for the problems I'm having at the bottom end...but it's something at least!

This morning I was diagnosed with achalasia. I was flabbergasted...as it turns out I don't have (and never had) GERD in the first place...although it's possible I do have a little bit of reflux. So, 6 years of PPI's, GERD treatments and on and on...for nothing.

My esophageal manometry results included:

UES resting pressure 307.3 (normal 30-118)
Incomplete relaxation of the LES when swallowing
Out of all swallows, only 10% generated peristaltic waves
Complete bolus transit occurred in only 30% of swallows

So, basically the surgeon told me that I only have about 10% of my swallowing abilities...and there's not a damn thing he can do about it. There is one upside to the whole thing though...I have a tiny hiatial hernia and, because of the way it's sitting, it has propped open my LES a bit. I guess it's the only reason anything is actually able to get into my stomach in the first place.

It's a precarious balance right now. But, he's hoping it'll last...at least for awhile.

I'm still in shock though. I never expected to have something...so...bad. I was psyching myself up for so many things...but not for losing the ability to swallow entirely!

On a side note, my stupid GI never did get to the surgeon in time (despite my best efforts) and I didn't get a colonoscopy done. And, just last week I had another horrible bout. I spiked a fever, got stomach cramps and pain, and then horrible diarrhea. Now, not to get too graphic or anything...but has anyone else noticed that their...BM's...are very smelly? Like, they smell weird? Hard to describe, and not something I've ever talked about with anyone!

So, that's my story for now. I'm still waiting for the first set of news to sink in. And I guess I'm going to have to "change my entire life" as my surgeon put it.....:ybatty:

 

[Cat-a-Tonic]

Oh Razz, that's awful! I hadn't heard of achalasia before but your description sounds terrible. And who would have thought that having a hiatal hernia would actually turn out to be a good thing for you!

As for smelly BMs in a flare, does it kind of smell like something died and rotted inside of you? Yeah, I know that smell! I don't know why it happens, my guess is that stuff just doesn't digest normally in a flare (maybe it really does rot a little bit? I don't know!). Even in remission I can't digest certain things (tomatoes and strawberries specifically) so I would guess that in a flare the ability to digest and absorb foods is even worse. Just my guess, I have no idea if that's really the reason for the smell - but yes, I am familiar with the smell of death coming from my bowels.

You mentioned changing your entire life due to this diagnosis - what exactly do you have to change? I'm guessing diet, but don't know what besides that? I hope nothing too drastic or awful. Is there any kind of therapy you can do to increase your swallowing function?

Hang in there, I'm sure this will be an adjustment and will take awhile to get used to the diagnosis. We're always here for you. Big hugs!

 

[Razzyirt]

Hi Cat!

Thanks for the reply (btw, I love your picture....we have a cat that looks just like that too!).

As for achalasia...I hadn't heard of it either. But I have done a bunch of research on it and it does sound awful. Basically, I don't have any peristaltic function in my esophagus anymore, and the top and bottom sphincter don't open properly when I swallow. So, when I do swallow, the food just sits in my esophagus for awhile.

I did luck out though, because of that hernia, it's created a small opening in the bottom sphincter so food can slowly trickle into my stomach.

Either way though...it creates the most awful sensation every time I eat! So, I've had to change my entire diet to a texture modified diet (so, basically all purees). I have to sit up straight when I eat (so gravity can work to get the food down) and sleep almost upright. I aspirate all the time, and cough constantly...

So, it really stinks! It's been a rough week...and I already miss textures and chewing *sigh* Now I just have to figure out what is going on with the rest of me I guess

 

[Cat-a-Tonic]

Ha ha, thanks! My cat is pretty awesome, perfect for someone with tummy troubles - she loves following me into the bathroom! She just sits at my feet and purrs when I'm on the toilet. She's so great when I'm having a bad tummy day. She can both entertain me and just quietly comfort me.

And oh my, I've tried sleeping sitting up when my GERD is bad, it's nearly impossible to fall asleep (or stay asleep) in an upright position like that. And that sounds like the most pleasant part of all of this, you poor thing. The diet in particular, it sounds like you're basically just eating baby food then? Have you considered the idea of doing a liquid diet for awhile? Ask your doctor first of course, but my understanding is that you can live off of something like Ensure pretty much indefinitely, and a liquid diet will also help your bowels rest. I read a statistic somewhere on the forum that a liquid diet has about as good a success rate as steroids do for achieving IBD remission, and of course without the side effects of steroids.

I think I have a hiatal hernia too, although mine has just been a pain rather than being a good thing like yours has. In your case I'm glad you have it! Mine seems to send up stuff I've eaten hours earlier and even water, particularly when I exercise. Still, mine sounds like a picnic compared to what you've got going on. I wish I had more advice for you or knew more about this stuff. I can offer a shoulder to cry on though and lots of hugs! Big hugs to you, Raz! I hope things get better soon, somehow.