Tuesday, October 29, 2013

Update

Sorry to leave you hanging, I got disgusted with the whole thing and had to walk away.

I've slowly been trying to explain the mess to my friends and family. At first, I just didn't have the energy to go through it all over and over, but everyone wanted to know how I was, what happened and I had to say something.

So the story came out because, once I started, I worked myself into a fine lather. I wanted to keep it to a simple 'fine, they're still not sure what the problem is, please pass the salt' but as I talked I began to get mad and it would all spill out.

My friends and family are just as horrified as I am.

This part of the story, which I didn't include in the last blog entry, especially upsets people.

Doctor: You didn't have pancreatitis.

Me: But I had stranding and a cyst on the CT scan.

Doctor: Stranding is something they say when they don't know what to say.

Me: ?

Universally when I share this part of the saga people say, 'Well, then why did you have the ERCP?'

And I reply 'Fuck if I know.'

Then they ask, 'So doctors just say whatever on CT scans and then other doctors order procedures based on that without knowing it's just BS?'

And I reply, 'Apparently.'

They always want to know 'what does your doctor say?'

All I can say is, 'I don't know. I won't see them until December unless I make a big stink and I'm out of energy for that right now. I can't face these people anymore. It's crazy town.'

I consented to the ERCP because I was told I had pancreatitis likely caused by Sphincter of Oddi dysfunction. The need to protect the pancreas from further inflammation was without question, so of course, I was on board with an ERCP.

If not for the diagnosis of pancreatitis, I would have waited and watched. I would not have rushed into the ERCP, there would've been no reason to.

To have the diagnosis rescinded after the procedure is...well, it's fucked up.  Thank God it wasn't a more serious procedure and that my complications worked themselves out at home instead of incurring the additional cost of hospitalization.

I just...WTF medicine? Why you suck so much?

I can't even say whether or not the procedure worked. I was eating better three days prior to the ERCP. The side effects of the procedure set me back for a few weeks, but I am now back to eating. Am I eating because of the ERCP or would I have gotten here on my own? It's impossible to say.

And FYI a six week deprivation diet of yogurt, pudding and kefir doesn't end well. I've been eating EVERYTHING now that I can tolerate food. I lost roughly 10-12 pounds while sick and have wasted NO time in gaining it back.

I've been eating gluten, sugar, carbs, stupid junk food, fruit, ALL OF THE FOOD, I EATS IT.  It's crazy and also bad for me. There is nothing I won't eat. NOTHING. All my efforts to abide by a low glycemic, vegetable loaded diet are useless right now. I've lost all control and it's weird.

The gluten triggered the asthma, which at least finally gave me the impetus to avoid it again. I'm working on the sugar and exercising as much as I can to offset it all.

On the gluten intolerance front, I've found the familial connection. It's not just me and I'm not the first to have issues, just the first to identify the problem as gluten.  It hits in middle age and causes allergy type reactions (i.e. prolonged sneezing fits, congestion, red runny eyes, bloating), or, in my case, triggers asthma, bloating, joint pain and flu-like fatigue.(Sometimes I have the sneezing but not always.) So there are a few of us now avoiding gluten and swapping recipes. Some of my relatives have been trying to figure this out for decades, trying all sorts of health diets to ameliorate it.















1 comment:

  1. What a mess! Oh my gosh.

    Pancreatitis is supposed to be a clinical diagnosis based on clinical and labs. Imaging is just to look for complications, but seems no one ever remembers that. Was your amylase or lipase elevated?

    You poor thing. Take care.

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/