I mentioned back in July that my husband has been having some health issues, particularly related to his stomach. First, he was diagnosed with an ulcer. Then, despite the meds he was given, things just kept getting worse. I haven't written about it much because, frankly, it's been depressing enough to live it each day, without reliving it here. But now I'm needing to vent.
It's gotten so bad that Jason's been visiting the emergency room, on average, at least once a week. ONCE a WEEK, for Christ's sake. He's been nauseous, and dealing with stomach pain, since late June. We've been to countless doctors, he's taken countless tests, and no one could tell us exactly what was wrong. Endoscopies, CT scans, colonoscopies... you name it, Jason has endured it. We learned that the ulcer is gone, but obviously some other problem remained. He is having these awful attacks of stabbing pain in the middle and right side of his abdomen.
It has been terrible for our family. Jason feels like shit, he's missing work, and he's not really well enough to help me with the baby or for us to have any fun together. We are all miserable and sick and tired of this crap.
On Sunday, it was "rinse and repeat." He started feeling worse, and I drove him to the ER that night. This time, rather than just give him pain meds and send him home in a few hours, they agreed to admit him to the hospital. Fortunately, one of the Gastroenterology doctors agreed with what we've been saying all along... Jason is exhibiting all the symptoms of gallbladder disease. The problem has been that many of the tests haven't backed up that conclusion. Docs have told us it "seems" like his gallbladder is okay, based on some scans and bloodwork. However, my research (and yes, I know that I am not a doctor but I care more about my husband's health than any PhD) shows that sometimes tests don't confirm gallbladder inflammation or disease. Most of the time, their tests just show if there are gallstones. But you can have a sick gallbladder without having stones. And get this... some studies have shown that 50% of people who had their gallbladders removed (without tests that confirmed their condition)... said their symptoms disappeared.
Obviously, most surgeons don't want to operate without proof. But that has meant that Jas continued to suffer. Finally, after week upon week of hospitalization with the same symptoms that seem to scream "GALLBLADDER!" we have a surgeon who is willing to remove it for him.
Best case scenario? Jason feels better and our family can move on from this nightmare of pain and medical overload.
Worst case? This isn't really his gallbladder acting up, and he has a low-risk surgery that doesn't give us the desired results. You might think we are crazy for doing this surgery and removing an organ without absolute proof, but that's how desperate we have become. Nothing has worked, and we've gone down every avenue in hopes of a definitive diagnosis. If this doesn't work, at least we know for sure that we need to look somewhere else.
I've developed a real disrespect for many in the medical community due to this experience. We've seen so many doctors, and we have had to FIGHT to be seen and heard. We've had to ARGUE for tests. We've had doctors say, "I don't know what's wrong with you, but there's nothing more I can do. Sorry" only to visit another doctor who CAN recommend some different tests. It's just so discouraging that we have to fight so hard and keep hitting dead ends. It makes me wonder about those who aren't able, for whatever reasons, to be a good advocate for their health. How many people suffer and fall through the cracks because of the jacked-up medical system we have? It makes me furious.
I am hoping beyond hope that this surgery solves Jason's health issues. It's scheduled for this Thursday, and I hope it's the first day of a new, healthy life for our family. God knows, after the hell we've gone through for the past four months, we deserve a fricking break.
It's gotten so bad that Jason's been visiting the emergency room, on average, at least once a week. ONCE a WEEK, for Christ's sake. He's been nauseous, and dealing with stomach pain, since late June. We've been to countless doctors, he's taken countless tests, and no one could tell us exactly what was wrong. Endoscopies, CT scans, colonoscopies... you name it, Jason has endured it. We learned that the ulcer is gone, but obviously some other problem remained. He is having these awful attacks of stabbing pain in the middle and right side of his abdomen.
It has been terrible for our family. Jason feels like shit, he's missing work, and he's not really well enough to help me with the baby or for us to have any fun together. We are all miserable and sick and tired of this crap.
On Sunday, it was "rinse and repeat." He started feeling worse, and I drove him to the ER that night. This time, rather than just give him pain meds and send him home in a few hours, they agreed to admit him to the hospital. Fortunately, one of the Gastroenterology doctors agreed with what we've been saying all along... Jason is exhibiting all the symptoms of gallbladder disease. The problem has been that many of the tests haven't backed up that conclusion. Docs have told us it "seems" like his gallbladder is okay, based on some scans and bloodwork. However, my research (and yes, I know that I am not a doctor but I care more about my husband's health than any PhD) shows that sometimes tests don't confirm gallbladder inflammation or disease. Most of the time, their tests just show if there are gallstones. But you can have a sick gallbladder without having stones. And get this... some studies have shown that 50% of people who had their gallbladders removed (without tests that confirmed their condition)... said their symptoms disappeared.
Obviously, most surgeons don't want to operate without proof. But that has meant that Jas continued to suffer. Finally, after week upon week of hospitalization with the same symptoms that seem to scream "GALLBLADDER!" we have a surgeon who is willing to remove it for him.
Best case scenario? Jason feels better and our family can move on from this nightmare of pain and medical overload.
Worst case? This isn't really his gallbladder acting up, and he has a low-risk surgery that doesn't give us the desired results. You might think we are crazy for doing this surgery and removing an organ without absolute proof, but that's how desperate we have become. Nothing has worked, and we've gone down every avenue in hopes of a definitive diagnosis. If this doesn't work, at least we know for sure that we need to look somewhere else.
I've developed a real disrespect for many in the medical community due to this experience. We've seen so many doctors, and we have had to FIGHT to be seen and heard. We've had to ARGUE for tests. We've had doctors say, "I don't know what's wrong with you, but there's nothing more I can do. Sorry" only to visit another doctor who CAN recommend some different tests. It's just so discouraging that we have to fight so hard and keep hitting dead ends. It makes me wonder about those who aren't able, for whatever reasons, to be a good advocate for their health. How many people suffer and fall through the cracks because of the jacked-up medical system we have? It makes me furious.
I am hoping beyond hope that this surgery solves Jason's health issues. It's scheduled for this Thursday, and I hope it's the first day of a new, healthy life for our family. God knows, after the hell we've gone through for the past four months, we deserve a fricking break.
13 Comments:
I had a severe gallbladder attack in my 5th month of pregnancy. It was AWFUL and the only thing that could really keep it under control is to remove it.
However, since I was pregnant and surgery wasn't quite an option, I was put on a strict non-fat diet. For more than one year, I never ate more than 15 grams of fat A DAY.
Does Jason have these pains after eating a meal? Are they worse at night? I'm no doctor, but if so, I'd say someone needs to give him a nice ultrasound of his gallbladder and pancreas and look for some stones!
Hope he has a speedy recovery and is up and at 'em ASAP!
Liz, They've done the ultrasounds and there aren't any stones. However, his liver enzymes and symptoms suggest gallbladder, so that's why they are willing to remove it. Fingers crossed for some success!
Good luck to Jason and to you.
How horrible! Good luck! And I agree the system is hosed! Our insurance companies only mess it up more!
I agree, it's so important to be a good advocate for your own health--my parents have been going through this over the last year with my grandparents. What do people without dedicated caretakers do?
I think not being taken seriously or really listened to by your doctor has to be one of the most frustrating things on earth. Obviously this has become an incredibly disruptive thing in both your and Jason's life and yet no one you've spoken to seems to want to figure it out. Bah.
I've never had anything along the lines of what you're describing, but I've been in a similar position and it's made me want to kill someone...especially when you have a hunch about something and no one bothers to consider it. I really hope that the surgery goes well and that this will all go away soon. :)
Good luck!
You absolutely do deserve a break! I really hope this helps! My birth experience totally made me appreciate how you really have to be your own advocate for your health in the medical community because so many medical types will just take the easy route. Be strong, I hope this clears up for all of you!
I have a friend who went through the same mysterious stomach pain for the longest time before some doctor finally thought to remove her gall bladder. What do you know, she felt better!
My faith in my hometown doctors was somewhat restored until earlier this year when this same friend started having pain in her right side, so she had an appendectomy (sp?). A few weeks later she was in the emergency room with the same pain. Turned out to be a kidney infection. There was never any need to remove her appendix. WTF kind of doctor can't tell a kidney infection from appendicitis?!
How awful...Thursday cannot come soon enough. BEST WISHES!!!!! and don't forget to let us know how it goes!
My mother had the same problems several years ago. It was a pretty good while (I think) before they figured out the problem. She had her gallbladder removed and was fine after that.
Good luck with the surgery!
I hope Jason feels better soon. I am so glad you are fighting to do what feels right.
First time commenter but the first thing I thought of was galbladder too!! Not that I'm a doc or anything .. just know a few people who have been thru it. It is supposed to be EXTREMELy painful!
Best of luck
I am new here to your blog and this is my first comment. My husband had many of the same symptoms that yours is having. After many office appts. and even a hospital stay, they decided to remove his gallbladder. He came home and still had the same symptoms. Have the doctor check your husband for pancreatitis by testing his blood. With pancreatitis the blood contains at least three times more amylase and lipase than usual. Amylase and lipase are digestive enzymes formed in the pancreas. Look it up online and see if the symptoms sound like his. My hubby had some of the doctors baffled here. It took an RN to diognose him. Good Luck!
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