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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Liver lesion and stomach ulcers. JK you're fine! (Am I getting Punk'd ... by a doctor?)


07-23-2013, 06:16 PM   #1
BureaucraticNightmare
 
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Liver lesion and stomach ulcers. JK you're fine! (Am I getting Punk'd ... by a doctor?)

Be brutal with me, ya'll.

I'm gonna vent my diagnostic misadventure over the last month. If it sounds like I'm a hypochondriac who won't take "you're fine" for an answer, tell me. I'm going to a new GI, but I'll cancel the appointment and pencil one with my shrink in instead if that's going to be more helpful. Haha.

I introduced myself in the other forum, so I'll start with what's new:

A week ago, Tuesday: Had a CT Scan with both oral and IV contrast. I'd been constipated leading up to it. When I asked the doc about it a couple days before the CT, he told me to take Miralax -- as much as I needed, because it can't hurt you and it's full of magical osmotic fairy pixie poo dust. I did; and it worked, sort of.

Later on Tuesday: A few hours after the CT, I was feeling awful and distended. Miralax worked in about 30 minutes the first time I used a dose, so when one dose failed, I took another a couple hours later. And then another before bed.

Wednesday: 2 more doses of Miralax. Still blocked up. Mild pain. Mostly feel gross. It's late afternoon when my boyfriend convinces me to call the doc's office. I talk to the nurse because the doctor's out.
Me: "Hey, I had a CT yesterday but honestly, I don't even care about that right now -- can someone tell me whether what's happening in my stomach is worth freaking out about?"
Nurse: (Takes my name). Wait, you're Dr. XXX's patient? Has no one told you your CT results yet?
Me: "No, but it's ok -- I really just --"
Nurse: "Wow, no one called? I mean, I have them -- I can read them to you. "
Me: "Um, ok, if that's not a problem?"
Nurse: "You were normal everywhere except they did find something on your liver. There's a small ... spot, on the left side. It's probably a cyst, but it says it might be something else."
Me, now totally panicked: "OK SOUNDS GOOD, THANKS."
Nurse: "So, what was your question."
Me: "OH!. THAT. Um. Is it normal to not poop for 24 hours after downing like six doses of Miralax and then trying a couple bisocodyl suppositories?"
Nurse: "Whoa, whoa, dear."
Nurse said no, that's not normal, and told me to call my doc's cell.

Here's where it gets weird. I called the doctor and got his voicemail. I briefly explained my discomfort that the fact that my masochistic fun with Dulcolax + Miralax gave me nothing but the equivalent of a bloody nose in the bum (pink mucus, lovely ). And, of course, I mentioned that I *knew* I was probably overreacting but I'd appreciate a call back at his earliest convenience because being blocked up was physically uncomfortable and was making me incredibly anxious.

Friday, 4 pm: Doc finally returns my emergency call; asks if I'm still plugged up. I'd gone a little, but still felt full, I told him. Keep using the Miralax, he said. Then, I asked about my CT. After a pause that made me wonder if he had any idea who I was, he said he'd get back to me.

A couple hours later, I get a voicemail. According to the doctor, the CT was fine. Everything was totally clear and normal and ordinary. He specifically said my liver was clear and looked squeaky clean. And then he basically said, "Let me know how the Miralax goes."


And that was it.




So, folks. Am I being fussy, or am I right to hope for a little more from a GI specialist than a pat on the head and instructions to keep taking laxatives until I'm back to happydiarrhearainbows?

(The same doctor insisted my upper endoscopy was completely normal. I know he knows more than I do, but I had a ton of little erosions in my stomach -- erosions that he saw and noted when he performed the endoscopy. I know he sees a lot of crazy stuff, but for me, suddenly experiencing a month-long fever, rapidly shifting bowel habits, frequent bloody stool and what I think might have been a gallbladder attack in the span of like four weeks ... well, it's scary.)

Right now, this doc has me I'm thinking I'm a garden-variety IBS sufferer with a bad case of nerves, a tummy ache, and a broken thermometer. Am I that off base?

Sigh. I'm off too go to the loo for literally the 20th time in two days.

Yeah, at least the Miralax finally kicked in. I feel weird venting given the literal hell so many of you have been through, but man, I need a hug. Scratch that. I need a basket full of puppies and some hemorrhoid ointment.
07-23-2013, 09:40 PM   #2
DJW
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Wow. So sorry you're going through this ordeal. Wish I had a basket of puppies and hemorrhoid ointment to send you.
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07-24-2013, 05:58 AM   #3
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It sounds like it's possible part of the problem is that this recent constipation is not an emergency situation. While uncomfortable, it doesn't sound like you have a blocked intestine or anything of that nature, because the pain would be such that you'd know about it. This might be why you're having trouble getting answers - with non-emergency, chronic problems, doctors often don't understand our need to get answers quickly.

I can think of one possibility that might explain the confusion over test results. Sometimes there are abnormalities that are found during testing and reported on the test results, but which don't actually signify anything dangerous or point to a specific diagnosis. So you might get one report that says your tests were abnormal, but a doctor could also interpret the results as being normal.

I'm not sure if these things apply to your case. However, it does seem possible that your doctor would be more useful if you have a scheduled appointment to see him rather than calling him. That way he might make more of an effort to remember who you are and your medical history, and have all your records to hand.
07-24-2013, 08:44 AM   #4
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Good point. I guess it's a context thing. I've gone from being able to ignore any health problems to having a bunch of weird going on to my body in a really short period of time.

Reminds me of puberty, without the cheesy guidebooks and mother-daughter classes. I mean -- think about it. If that "becoming a woman" stuff happened to a kid with no head's up, they'd probably freak out too. Unexplained blood in the toilet will do that to a kid.

Thanks guys . I've calmed down a ton.
07-24-2013, 09:00 AM   #5
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I agree about the random information on reports that sometimes raises an eyebrow or just plain panic....

Greg's abdo angiogram showed " a number of extra arteries to the kidney's" 3 on one and 2 on the other...we were like .. far out! But a quick google search proved this to be a common anomaly...

I would be asking for a written copy of your reports beaurocratic nightmare asap just to confirm nothing is overlooked
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07-25-2013, 05:44 PM   #6
Trysha
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I think you should look for another GI specialist.
This is no way to treat a patient with the symptoms you are experiencing. Blood in stools is never normal and should be properly investigated.
Likewise the stomach erosions which may precede ulcer formation.
At the very least he should be seeing you again and showing the pictures that would have been taken , his findings and diagnostic summary., and future actions to be taken.
I am sorry that you have been treated so badly---its enough to make anyone upset.
Feel better soon
Hugs and best wishes
Trysha
08-05-2013, 11:30 AM   #7
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Feeling loads better lately, but had a question about the CT write-up I finally received.

It mentions "several loops of unopacified bowel, particularly in the lower abdomen and pelvis."

Does that just mean the barium didn't make it down there? And if so, what can cause that -- a blockage, or perhaps just not sufficient time for the barium to make it through the full intestine?

I had the IV contrast as well -- so if there were anything unusual, it'd still be visible on the scan, wouldn't it?
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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Liver lesion and stomach ulcers. JK you're fine! (Am I getting Punk'd ... by a doctor?)
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