Saturday, September 17, 2011

Daffodil Campbell and the Bladder of Gaul

You googled, didn't you. Against your better judgement, you googled your symptoms. You googled the test the doctor ordered. You googled, and followed links, and googled the information you found there, and now you know for sure exactly what is wrong with you, what tests you still need, what diet you should be eating, and also that you might have cancer. Because no matter what you type in, cancer always comes up in the results.

I would hate to be a doctor in the age of google.

For the past 24 hours I have been doing my research. I had an endoscopy yesterday, which did not go as planned, and now I am flying to another island for more tests - which is unsettling to say the least. My trusty google research has left me with a notebook full of acronyms and names of expensive tests and numbers that indicate "safe" levels and a slew of saved weblinks. What I didn't find was a clear answer. I won't know until they operate and have some pathology. Some sort of proof. And that isn't until October. In the meantime, my stomach - according to the doctor's notes in my record - contains a significant amount of bile. My stomach is backed up. So I am full, but my body is hungry. I can't believe I have only lost 5 pounds so far. The elimination of bacon from my diet ALONE should have taken 10 pounds off my frame. I have had bloodtests, ultrasounds, cat scans and x-rays. All normal. No gallstones, either. All we have to go on is the results from the endoscopy. Bile. That's it. That's all I get.

While I wait for definitive answers from the tests and surgery I have in my future, I thought I would add my experience to the google results. I have a pretty good idea of what is going on in there intuitively - mostly because I can FEEL my gallbladder, which is a strange and creepy sensation that I am looking forward to eliminating ASAP. But I know my body, and years of illness have left me hyper-aware of how my body is functioning. If something is wrong, I'll know before the test will. I can feel scar tissue, and sense infection. I don't think anything is infected, though. My theory is that I have scar tissue and/or endometriosis wrapped around my digestive tract - and that my gallbladder may have adhesions on it that have caused it to twist and become attached to my colon or my stomach or some other part of my abdomen. All is not well. My gallbladder my not be processing anything at this point. I am backed up and miserable and whatever I eat is trapped in my stomach slowly breaking down and working it way out through the now-twisted pathways.

If you have endo, this may sound familiar. If you searched for endometriosis and gallbladder, I hope this post has found you.

I have had a lot of surgery - 13 is my best guess - and all were related to endometriosis. I've had 8 or 9 laparoscopies, 2 laparotomies, and a cesarean. I have had a hysterectomy (uterus and ovaries). I have had my bowel reconstructed because it was twisted and choked by scar tissue. I have had endo peeled off my diaphragm, and it has spread down into my left leg almost to the knee. And now, I fear, it has gotten to my gallbladder. My gastroenterologist ordered a HIDA scan which requires that I fly to another island.

Thank god that island has strippers.

My derby wife has kindly offered to take me to the strip club in my wheel chair after the procedure, and I think that will be something nice to look forward to. Don't you? I will be high on morphine and wearing a hospital johnny and stilettos - because I always wear stilettos. It won't be weird at all.

But first, let's talk about my gallbladder, and my colon, and my digestive system in general. I'm miserable, and I know that there are other women out there who are miserable, and I just want them to know they are not alone, and they are not crazy. I had heard tales of gallstones and kidney stones and the horrible pain and discomfort they cause. And I had sympathy, of course - I would nod my head sagely and make tsk-tsking noises, and bring over a covered dish and offer to watch the kids. But I had no idea that these people felt like they were going to die - for days. Weeks. This is torture.

Here's what it felt like when I started having gallbladder trouble:

First, I thought that I might be having a heart attack. I wasn't, of course. Turns out a gallbladder attack is just like those pesky panic attacks I have from time to time - they aren't signaling your imminent demise. Which is almost too bad, because after a few hours, you start to wish you would just die and get it over with.

It's that bad. It's a combination of drowning and choking and being crushed by a terrible weight.
I can't breathe. I can't think. I can barely swallow. There is this unbearable pressure verging on pain just under  my ribs on the right side. And in the middle of my back. Add a sharp twinge now and then, that leaves me breathless and doubled over. It's not a heart attack....maybe it's my appendix? Clearly, something is about to explode. It's just a matter of time.

You feel like a stuffed goose. All skinny throat and jam packed belly, full all the way up to your gullet, which is searing and straining. You are starving, and your stomach is growling and gurgling to tell you so. But you cannot imagine taking one more bite unless you burp, or fart, or take a shit - or all three.

All three would be amazing.

So you shift around and try to get comfortable. Try to find a way to sit, or lie down, or stand and lean in such a way that you no longer feel like you are going to just explode. You roll around. And you pace. And you burp. And you fart. And you sit on the toilet.


Sometimes, if you are really lucky, you puke. Because after all, that's what you feel like doing. You spend your time regretting every morsel of food, every sip of liquid that has passed through your lips. Ever. You swear you will never eat again, no solid foods, ever ever EVER again, if only your stomach would stop straining and aching and churning.

Oh, the churning. It's unholy. It's like the Exorcist, the pressure and pain beating it's way from the inside out. Your throat burns and your head pounds and your stomach aches.

And it never stops, until suddenly it does. Or at least, it lessens so that you can breath and consider eating something. And then you innocently have a pudding or a bit of bread and butter - and you are thrown headfirst through this wormhole, time traveling. And you find yourself sweaty and writhing in bed again.

I have found comfort with a hot tub, and I spend hours in a rocking chair. The rocking seems to ease the pressure a bit. Not much, but enough. Enough so that you can sip some tea. And you wait.

You wait for relief. You wait for an answer. You wait for some strippers. Strippers make everything better.


GastroparesisGirl said...

i am not playing doctor, i am not trying to diagnose, but this sounds a lot like my symptoms and endoscopy results, and for me it turns out it was a condition called Gastroparesis, which is when your stomach does not contract, so food just hangs out and sits in there, fermenting, until it SLOOOWWWLLYYY drains out via gravity. anyway, GOOD LUCK. my thoughts are with you!!

smiles :) said...

I've been reading your blog for about 6 months now, and it's at turns heartwarming, interesting, and hilarious! It's been interesting learning about island life, and fun to hear about roller derby, etc. BUT there's one thing I don't get- what's so great about strippers? That's the only thing that i flinch over in your accounts, (aside from the painful health stories!), and I just don't get it. I AM pretty conservative, but i try to keep an open mind, but i just can't see that job as anything more than debasing to all women in general, and those women specifically? Why would you support and look forward to such an outing? i'm curious, and not judging you- you seem like a incredibly honest person who wouldn't mind explaining.. Thank you for the blog, and I hope you're feeling better soon!