CT scan negative...

[DancingLight]

hello all!

to those of you following my saga...

the ultrasound of my gallbladder was "inconclusive" but showed a small polyp...

they wanted to do a CT scan to further investigate the situation...

from the nurse on friday afternoon my mom didn't get much info (i was napping...and missed the call...bummer!)...

this time she said that they found a small renal cyst. she said this doesn't mean anything and doesn't explain my pain.

i love that they keep finding a bump on a different organ each time...

anyway...

i REALLY NEED TIPS from those of you with GI pain.

a lot of you talk about pain...and i am wondering if what i have experienced sounds familiar to any of you. (if this has already been discussed in a previous post...please direct me there. thanks!)

i have had two "attacks" in the past 3 weeks. i still don't feel quite "right" and am even more wiped, muscle fatigue, stomach feels "weird" and some nausea.

both attacks were amost identical so that seems to rule out a fluke incident or reaction to food.

here's what they were like:

i woke up in the middle of the night from a sound sleep (around 3 or 4 am) with severe pain, nausea and these really gross burps (sorry...but details matter!).

both times i went to the bathroom several times with such severe cramping and pain i felt like i was going to pass out (i don't faint...so luckily that didn't happen).

the things that are really different are the fact that i wake up in the middle of the night, the burps and nausea and the fact that the pain DOES NOT SUBSIDE. it persists for hours and hours and i am doubled over.

this second time i also ended up vomiting even after taking the zofran and percocet like i had received in the ER the week before.

this is different from any pain i have ever had. the middle of the night stuff. the nausea and burps. and the lasting severity of the pain.

i am used to IBS type pain when going to the bathroom or right before, but not for hours and hours.

does anyone have ANY IDEAS OR TIPS????

i am trying not to stress about this, but i am fearful of another attack in the middle of the night and i don't know what to do when it happens.

at the ER they just told me that my bowels were trying to pass something. for 15 hours???

to those of you with GI pain...have you had this sort of experience?

should i keep investigating this further or let it go? at this point i do not know the next step. should i at least schedule a visit as soon as i can with my GP who has done the test so far?

i don't want to make a mountain out of a mole hill...or cry wolf if this isn't a big deal. but i also don't want to ignore another problem.

does this sound like POTS or something else? any ideas?

i am really lost on this and would be grateful to any insight, links to good sites, etc!!!

thank you!

i'm sorry i havne't been up on posting lately...i've been so wiped by this! so, i feel bad asking for stuff!

later alligators!

emily

p.s. i don't know why i can't ever pick the right icon! i meant to pick that green guy! oops!

[MightyMouse]

Hi Emily, did they do the HIDA scan with CCK? Your description sounds like the gallbladder attacks of mine--I had zero stones, but the gallbladder had become atonic and stopped passing bile. The pain was intense and for me, sometimes lasted for days. The very last episode I had before they took out the naughty gallbladder, I couldn't walk or stand up because of the pain and it lasted more than a day.

Hang in there!

BTW, I also have a cyst on my right kidney. It's apparently a common finding and is usually not anything to worry about.

Nina

[MightyMouse]

Oh, and I forgot to add that I had that awful belching too--I remember joking that it sounded like I had aliens inside me.

[DancingLight]

Nina,

thank you! i was hoping you would respond.

no, i haven't had a hida scan. i was definitely wondering if i should ask about that though.

i have one other question for you...with the pain...was your pain localized???? or was it all over the abdomen?

thanks bunches! sorry you have to be the "expert" on this through your own experiences...

goodnight!

emily

[MightyMouse]

When I didn't have an attack, the pain felt like a bruise in my back. during an attack, my whole belly and back hurt, i had a wicked headache, it was hard to take a breath because of the pain, I had intense nausea, etc.

Ask your doctor about the cck hida scan--it's really not that big a deal--pretty easy test, at least for me. They'll give you an IV with a radioactive tracer in it (not dye), then scan you... then administer the cck (a hormone that tells your gallbladder to do it's thing). Once they give the cck, they're able to "see" what your gallbladder is doing--whether it's emptying properly or not, even if you have no stones. Mine was not emptying much (less than 30%), which means the rest of the stuff was backing up.

Hope that helps. Talk to your doctor. Nina

[Guest Julia59]

I think a hyda scan will tell you more also. Like Nina, I have no stones that can be seen on an ultra sound. The hyda scan showed my gall bladder was only working 60%. It's not as bad as yours was Nina, but at some point i'll need to have the bugger out.

I also get the nasty burping. MY brother in law said I sound like a lion growling. I have had these burps for years on end. My sister in law couldn't get a Doctor to believe that her gall bladder was going bad. She had a constant sour stomach, burping, and the sorenees in the right upper quadrent radiating to the back. They accused her of being "non-compliant" because she didn't want to do more GI testing. She knew it was her gall bladder and not her GI system---i.e.----> bowels, stomach---ect. Finally they did a hyda scan and found her gall bladder not to be working well at all. When they took it out it was full of sludge---sorry gross----basically backed up bile. She is normally a healthy person thankfully without any other health issues other then MVP with no symptoms.

She had the gall bladder out on a Thursday, came home the same day, rested on the weekend----and was back to work on Monday. She was lucky to have her health in good order otherwise.

My heart goes out to you Emily. I know how difficult it must be because I was there in the beginning of all this mess. So far i'm not to horribly miserable with it----so i'll be hanging on to it for a while----I hope. However, i'm up because I couldn't sleep due to a cruddy feeling in my gut. Burping, lower gas----fun fun fun. I also have that dull pain on my right side radiating to my back---but it usually goes away. It happen in spells. I did eat some junk yesterday---dips, chips ect. Granted the chips are without trans fats----but even the healthy fats will flair up a gall bladder. I've got to stop rambling--------

I hope you get some relief soon----------so you can sleep.

Julie :0)

[blackwolf]

Dear Emily,

I too would say go for the cck hyda scan. I can also relate. My gallbladder was full of 2 stones and, as the doc called it "sludge". It was at about 40% out put.

It was a dream come true to have it out. I have trouble with it during both pregnancies of mine. I had it out 20 days after my daughter was born.

Blackwolf

[goldicedance]

Hi, I couldn't agree with Nina more. Two weeks ago I had my gall bladder removed based upon the results of a HIDA scan with CKK (CHK/CKH???). This scan showed that my gall bladder was not emptying out. According to the surgeon the HIDA with CKK is the gold standard for diagnosis of gall bladder problems. He told me that apparently my gall bladder had not been functioning for some time given the adhesions that he had to deal with when retrieving my gall bladder. Also had a 2-fer---took out my appendix as well.

My roommate in the hospital had her gall bladder removed because of a polyp.

Have you been tested for metal poisoning--tests involved 24-hour urine collection. You might want to consider that as well.

Good luck! ....Lois

[justin]

emily

when i first starting getting symptoms of IBS (11 years ago now) i had just had my appendix removed. my mom drove me to the hospital several times in the following months because of the pain, which felt just as severe as the pain i experienced during the appendicitis. like, rolling around on the ground agony....

anyway, after a few times, they told me it was 'spastic colon' which was the sexy term they used back then to describe what has since become known as irritable bowel syndrome.

anyway, fortunately for me, cramps only stuck around for the first few months of my entry into the wonderful world of IBS. kind of like an orientation, meet and greet, get to know the worst part of it right off the bat, heh.

most of my experience since then has been with IBS' other symptoms (rarely do i get cramps anymore) but i guess i'm trying to say that severe pain in the abdomen CAN happen with IBS.

justin

[morgan617]

emily, where is your pain located. lower gut, upper gut etc. i have episodes where it feels like something is ripping my chest out through my back. i also have spasms in my esophagus which are like a cramp in the foot, but continuous. i had a hida scan that showed an ejection fraction of less than 20%, stones and sludge, but they will not take it out. i also get severe pain right above my belly button. i attribute a lot of this to my gb, but they said until it affects my liver or i get pancreatitis, they won't touch me. yea right wait till i'm toxic anyway, i get those horrible belches too and that is classic for gastritis. i don't think you've had an endoscopy have you? do you take anything for reflux? if it's in the lower gut, i have gotten those too. there's a med called levsin or nulev, which helps with gut spasms which are so incredibly awful. it's why i haven't been on much either. i can't even drink boost anymore without severe pain. i see my gastro next week. he will either sh## or get off the pot with me (excuse me, but have just reached my limit ) so you might check into those things. it's sounding like it's time for a couple of scopes. good luck sweetie morgan

[DancingLight]

Thank you so much for all of your helpful replies! What a world of difference it makes to me to have your insight and support!

Here's where things stand...can't get in to the doc until next friday! I find that very frustrating.

I also hate that I call and call and no one calls back. The triage nurse is so nice, but I don't know where the process breaks down. The nurse for my doc is not so swift sometimes which is frustrating. Usually email is the best way to get a response, but no luck. I did however, email today and ask about getting the HIDA scan if at all possible before my visit next week. I would not have known to ask about it if it wasn't for this site!

Thank you to each of you for sharing different experiences! Morgan...the pain didn't seem to be localized or stay localized and was in both upper and lower gut. I have a lot of that soreness above my belly button too like you describe. I feel like there is a big mass on the right side of my abdomen all of the time since this all started. Or like something is pinching. It is hard to describe. But it doesn't feel right! I have only low-level nausea and discomfort outside of the attacks. But also have started having a lot of discomfort after eating and stuff too. The burps ONLY happened during the two nighttime attacks. I am someone who almost never burps! It is kind of a joke with us in our house, b/c it is so rare. With this stuff, I wasn't burping anything up like with reflux but they tasted soooo awful and made the nausea a zillion times worse. The pain was non-stop and worse when i went to (or thought i had to) go to the bathroom.

Also, I have felt so toxic...like I used to feel before I started clonidine and before I figured out food intolerances. But have not changed anything there. hmmm....and am more exhausted than usual. Could this all be related???

Morgan...man, i hope you feel better soon! tell chloe to take it all away! your post made me crack up though about your GI doc!

Later alligators! Nap time!

emily

p.s. to those of you have gall bladders that don't function very well...i don't understand why they won't take it out??

[geneva]

Hi Emily, as you know I am going through a round of GI stuff myself and what you wrote in the post above could also describe me...misery loves company I guess!!

I just had my ultrasound yesterday and while that is a piece of cake test, I was 14 hours without food or fluids and it knocked me on my butt....I still can't believe how weak I was. Contributing was probably that my husband had an accident this weekend and scared me...I don't manage stress well since POTS. It also was an hour drive to the test and back and so I felt like a rag doll all day. Better today.

ANYWAY....one thing that I have discovered through trial and error, is that I only have those night time attacks when I eat something...anything...after dinner. My theory is that my system needs entra "processing" time and can't handle later evening snacks. Every time I eat after dinner, even small quantities, I wake up without fail between 2:30 and 3 am in awful pain.

Before I knew I had IBS I would have right side pain that would double me over...I couldn't stand up straight. Once I thought it was my appendix bursting or something and went to the ER. They took it seriuosly, Xrays etc but the dr. smiled and said the results proved I was full of *&%! and should eat an orange a day. Boy was THAT embarrassing!! Now that I understand the pain is spasms, I take Hyoscyamine and it really helps the spasms.

But, I still have achy stomach much of the time. I am waiting on ultrasound results and hopeful he doesn't order a CT scan. In Feb I had one and for the first time had a horrible adverse reaction to iodine. Not anxious to repeat.

I am finding that the combination of certain foods cause me to have a bad reaction. Just starting to read more about that and try on my very sensitve GI tract.

Sorry you are feeling so bad Emily. Wish you could get into your doc sooner. Is this the GI doctor you are trying to see? It looks like to me we have to go through ALL the available tests to learn it is "JUST Pots".

take care.

[Guest Julia59]

I guess it's my choice to not have my GB out. My old PCP, whom I just lost, told me to get rid of it. But I guess my fear is the anesthesia. And now with my cervical spine/cranial area going so wrong---it has been the priority because of the brain stem involvement. Anesthesiologists must me extra careful , not only because of the POTS----but because of the instability in the cranial----spine junction during the intubation process. I have just learned this upon my vist to the chiari institute.

If I eat right, it's not too bad. I don't get a lot of nausia---which would certainly drive me to have it out. I just get the "misery" as Grandma Walton used to call it.

LOL...........................................................

I have all kinds of gut problems----and i'm used to it. I just really hate the slow bowel motility though. If I could fix that with surgery---I might just lose my fear of the anesthesia---------------------

Hang in there Emily-----

Julie :0)