GI attack #3...Need guidance!

[DancingLight]

Hello all!

That green face is how I feel!

I have been trying not to post a new topic b/c of the holidays. But I REALLY need your support and tips. And well, calypso...thanks for making me feel okay about posting! I needed that.

IF this question has already been addressed in a previous post...PLEASE direct me there instead of using your precious energy to retype stuff...k?

I have gone back and read all of your responses to my previous posts on this topic as well as read other posts on gallbladder stuff.

Okay, I will try to be short...

Many of you have been following and supporting me through my previous two GI attacks, u/s of gallbladder and CT scan.

Over Christmas weekend, I had my third 'attack'. It was exactly the same as the first two in symptomatology, only worse. I try not to be a drama queen with this stuff...but this was so EXTREME.

It started at 4:30 am Sunday morning with severe abdominal pain (seems to be above the belly button most), feels like someone is trying to pull my stomach through my back (morgan I stole that description from you), but the pain radiates everywhere. Again, I was awakened from a sound sleep.

Mostly, I had pain, but then, Sunday evening it kicked in really bad. Severe pain, diarrhea, horrible burps, nausea, then...sorry, but wretched retching.

I have done a LOT of throwing up in my life...and lucky for my mom, she's been there for it all...and she said she has never seen me this sick. I almost choked on my own vomit. I was sweating, out of breath, and near passing out. The pain was excruciating.

I took zofran and still lost my cookies. Took percocet and no relief from the pain.

We made it through the night.

Went to the doctor Mon. morning, but my doctor was out of the office. The doctor I saw said: It's IBS, you'll just have these attacks, you're under stress, it's something you ate, I don't worry about the cause--just the symptoms. Gave me levsin, more percocet and zofran and sent me on my way. I went to the doctor in my slippers and PJS!

I have also seen our local GI doctor after the first two attacks and he also completely dismissed me. I asked for a HIDA scan with CKK and he wouldn't do it. Many of you recommended it, and I went in asking for it...but he refused and said it wasn't necessary, too many false positives, etc. He said the stuff would have shown up on the u/s or CT scan, blah de blah. AAAAAAArrrrrgh!

I know that it is nothing new to be dismissed by doctors and that we hear about it every day on this site...so, mostly I need some direction...

DOES THIS SOUND LIKE ANYTHING YOU HAVE EXPERIENCED? WHAT COULD BE CAUSING THIS? WHAT SHOULD MY NEXT STEP BE? I JUST WANT A LITTLE INFO. TO BE ARMED WITH WHEN I ASSERT MYSELF TO THE DOCTORS. IF YOU HAVE HAD YOUR GALLBLADDER OUT...WAS IT WORTH IT?

I don't want to make a mountain out of a molehill. Could this be 'just pots?' The thing is, ALL of my GI symtpoms have been soooo much better...no bloating, gas, etc. since doing the strict diet and taking clonodine. So these attacks seem really weird.

I am REALLY SCARED. I know, it isn't that bad. But, I was so traumatized by it all. And I don't know what to do if it happens again????? Since the meds didn't work.

THE ATTACK WAS OVER A WEEK AGO AND I STILL FEEL TERRIBLE! I still have NO appetite, am eating a bland diet (thank God for Jewish chicken soup), feel nauseas, my bowels are all clogged now, and I am so weak and exhausted I am not up to doing anything. I am a nice white shade (or maybe with a yellow tint? ).

If it is IBS...still, this isn't a solution.

I am going to try to get into my regular doctor as well as contact my POTS doctor. But, I thought I would check in here and see if you had any tips to arm me with before I go. (Had to wait until the holiday was over...office was empty!)

AM I RIGHT TO PURSUE THIS FURTHER? (Nina, I keep hearing you say 'Severe GI pain should never be ignored)

Okay, I am so sorry this is so long...if you are still reading...THANK YOU!

And, for once...I'm not 'off to get something to eat...' b/c I have no appetitie! You know I don't feel well then, huh?

Goodnight!

Later alligators!

Emily

[Guest tearose]

Oh Emily, what a horrible scene! I am sorry you are sick like this.

YES, keep on pursuing this!

Yes, I did write this up but I'll summarize here. I went years with having such bad pains, vomiting, gas, bloating, digestion issues...the darn tests always said everything was normal. (even a fancy MRCP test) Finally, after being soooo sick, I was only eating bland soft foods, and I lost so much weight that my shoes felt floppy on my feet! My internist said I had to see a gastro doc. The gastro doc was nasty and said I was making myself sick by having such a limited diet! I said no, I eat this way to avoid pain, gas, vomiting...He said "either put the foods you avoid back into your diet or I'll just dx you with IBS" I said, "I don't have IBS, it is not like I get the runs and the other symptoms of IBS, my food feels like acid in my stomach and then I puke" Well, I went home, ate the steamed vegetables and poached fish. By morning I had been on the floor rolling in pain and puked till I was bringing up bile and I turned as white as a sheet. The internist sent me to the hospital. The ONLY test that showed a problem was called something like "hida or pida scan". It showed delayed emptying of my gallbladder. I had no stones. The surgeon said my gallbladder was so scarred and diseased that I must have had numerous attacks over many years. He said he had to be very careful because the gallbladder was stuck onto my liver and he had to be careful not damage the liver! Your gallbladder is supposed to look bluish, mine was grey! uck! IBS my ask! Please get to your primary doc and find someone to help get you out of this miserable cycle of pain and sickness!

Yes, removing the gallbladder helped me feel 85% better! I give this disclaimer since my remaining smaller pains may be related to the digestion problems from pots. However, I am glad the gallbladder is gone and I have no regrets about having it out. I could not have gone on the way things were.

Please let me know what I can do, you are such a sweety and I don't feel good when you feel so bad!

feeling blue along with you, tearose

[MightyMouse]

That type of GI attack is not likely to be POTS. Your doctor sounds like an ***--sorry, that you've had to endure all that pain and vomitting

Yes, CCK Hida scan is the test that shows emptying of the gallbladder. Mine was working at less than 30 percent--and mine was also way too small, covered with scars and embedded/adheded in my liver.

Levsin might help a bit with the spasms to get you through crisis. Sounds, though, like you need to see a doctor who is willing to be a better detective.

Nina

[morgan617]

So sorry Emily! I have felt sick for so long now and have attacks too. Dave had two attacks and they did an u/s that showed a little sludge. But they took his right out. It had a stone that didn't show up that was blocking the opening and his gallbladder was in terrible shape. I had a hida scan over 15 years ago that showed my gallbladder was only working at 15%. The last cat scan I had showed sludge, stones, thickening, you name it. So they did another hida scan, but since there was no blockage, they won't take it out. So there it sits, making my life miserable. i know my bloating, belching, nausea, weird bm's and gut problems are caused by it, but they will not take it out. So go figure. My hubby felt sick twice, so rip it out, and I have constant problems and so what. Gallbladder pain is typically in the right upper quadrant and goes through to the shoulder blade, but can present as many different symptoms. Dave's had a little problem with occasional diarrhea if he eats really fatty foods, but over all feels much better. So I don't know what to tell you hon. I am in the same boat and getting the same responses as you only it's been going on for 15 to 18 years. It would be interesting to see what mine looks like. Just keep pushing them. That's all you can do. And stay away from anything fatty. Sending you hugs. morgan

[corina]

Hi Emily,

I'm very very sorry for all this problems you have. I can't do anything to help you with it, so I just wanted you to know that I feel sorry for you and that I hope you'll find a solution somehow. I would certainly go after my doc until he would help me, nomatter how he did it, but he just HAS to help you out. Wish you good luck on this,

Corina

[Dawg Tired]

Keep trying! Keep harassing! Over 40% of gallbladder inflammation/stones/sludge present with all negative tests! If it isn't taken care of it can rupture - there's a set of problems you don't need!! EEK!! Somehow you need to get to a surgeon. Even if it isn't your gallbladder it might be an adhesion or something else that than can be "fixed".

[Merrill]

Hi Emily -- I was wondering about scar tissue too (adhesion) ... have you ever had any surgeries? A friend had an ovary removed 16 years ago ... and just this year had hideous bouts of severe pain ... they went in and found scar tissue wrapped around everything... took the appendix while they were at it.

If no surgery ... well ... yes, I'd go after some gallbladder investigations too. It certainly sounds as if it can cause the kind of **** you're going through. I'm so sorry you've been sick like this... Please get a referral for a new doc if you're current one isn't helping you get to the bottom of these episodes. One is bad enough ... but three are untenable.

Take good care--hope you feel better soon,

m

[Nicole's Mom]

Hi Emily,

I'm so sorry that you went through such awful agony and were dismissed like you were. It really ticks me off that someone as kind and sweet as you would have to go through such a horrible event 3x with pain and sweating and wretching and all the awful after effects and THEN have to deal with that glibness/ dismissiveness from the medical community. Nobody should have to go through such things. It happens far too often, though.

My advice to you, dear Emily, is don't take no for an answer. Push the issue for yourself and demand the test or tests that you feel you need. It seems that you have a pretty good idea from your own judgement what you need along with some ideas as well from this forum as to what you should first pursue.

Again, I'm so sorry about this recent stomach attack. I hope you get some answers soon. And I hope your Mother's Jewish chicken soup is helping you to feel better in the meanwhile.

Best Wishes,

Beverly

[Guest tearose]

Hey there Emily, are you as green as you were last night? How are you managing this mornin'? What are you going to do next? You can see we all here want you to be seeing a good doctor asap!!!

I can imagine how you must be torn between dragging your sick body to the doctor or staying horizontal resting up...go to the doctor while you are ill! I think being in the middle of an attack is valuable in the diagnosing of the problem. Pleeeeaseee do something!

With you in spirit, I'm sending you pulverized toll house cookies and celery soup!

yck! Maybe not.

How about what works for me: mashed butternut squash, hot rice cereal, and no kidding here, if you can't keep up with your protein requirements, ask for a protein shake that will keep you strong in case you do have surgery. In fact my surgery had to be delayed until my protein levels went higher.

When I have problems even now with digestion, I go right back on a mix by ross nutrition called pro-mod.

Anyway, feel better dear one, (((hugs))) tearose

[morgan617]

Hi Emily, I forgot to tell you, that when I was arguing with my doctor about it, he said you can always find a surgeon who will take it out. So maybe you should just see a surgeon and stop messing around with creeps. If it doesn't help, at least you tried, and if it does, you're going to feel a whole lot better. My choices are just so limited where I live, I would be in real trouble if I went behind the backs of the only two doctors that give a rip. I did tell my pcp that I do everything they say and they NEVER back me up when I want something, he just gave me a funny look and said you're right. But it's still in there. So you might think about it. And they can rupture, not to frighten you, just like an appendix. So do whatever you need to do to take care of yourself. Cuz we all love ya! morgan

[MightyMouse]

Morgan, I'm with you--I went to a surgeon despite my doctor's assertion that my gall bladder was fine because all the tests he ordered had shown no stones (regular Hida scan and multiple ultrasounds). I was going to suggest seeing a surgeon in my post above, but wasn't sure if you can do that with you medical plan--mine allows me to go w/o getting a referral or rx from my primary doctor. If you have that kind of flexibility, I'd look into seeing a surgeon.

Nina

[Guest Julia59]

Emily,

Don't be sorry for a long post. You post as much as you need!

Hyda scan was the only way they found my gall bladder issues. Works about 60% back in early 2001. I must say----I was not nearly as sick as you---vomiting ect., but I still got the Hyda scan. I can't believe they won't refer the Hyda for you.

Maybe you can go straight to a surgeon. Will your insurance allow?

You hang in there-----you'll be in my thoughts and prayers.

Julie :0)

[MomtoGiuliana]

Hi Emily

I have no suggestions, but it looks like you have gotten good feedback. I just want you to know I am concerned and hope this gets resolved soon. I'm sorry you've been so miserable.

Katherine

[calypso]

Oh Emily, this sounds awful. I don't have much in the way of bowel issues except this yucky gas I've had since a few months after the POTS began, but I do have an occasional IBS-type attack like this. I don't get the vomiting but do get the sudden explosion. (Pardon the description.) Once it occurred in a Wal-Mart. How embarrassing.

Anyway, I certainly agree that if these episodes are repeated, and they occur out of the blue, that they are not stress. It sounds like you already are steering clear of certain foods and are on a diet that should not offend your digestive system. I wish I had more advice for you, since you are always so helpful to me.

I will send healing power your way and hope these attacks stop.

Amy

[DancingLight]

thank you all sooooo very much for your posts...

i started out thinking i felt a tad better today, but now i feel terrible again.

sorry i haven't gotten to post sooner, i was at my dad's house for the day (a change of scenery i guess? all i did was rest), so i didn't have computer access.

thank you tearose for checking up on me this morning again! you are too sweet.

nina, julie, morgan, gayla, stacey, and tearose...thanks for your 'stories from the trenches'...and the rest of you for your support.

i was so grateful when i logged on and saw all of the responses. i appreciate it so much...b/c i needed the push from you all to keep being assertive.

as for the ER...i did go during one of the attacks and the notes from the visit say 'patient is in no acute distress.' he told me that i was just 'passing something through my bowel.' okay, it's not like we live in the big city and people are coming in with gunshot wounds all day long...so i don't know what you have to do to be 'in distress!' tearose, i also went in to the doctor two times while feeling awful and was still dismissed. my primary doc saw me after the first attack and took me very seriously, but referred me to the GI doctor who then dismissed it completely. i am trying to get in to see my primary who is, i think, the only doctor in town who takes me seriously. (calypso...it's not about how many doctors you've seen, but if you've seen any good ones! i've seen too many to count. and after i went to hopkins, i learned, finally, that i AM a medical marvel! and that it isn't about me...i am not 'crying wolf.' it is sad and infuriating, but true)

my mom is going to call first thing tomorrow morning and try to insist that i be seen. i hate to go that route, but sometimes they listen better to parents. at this point, i don't care how i get in. my dad isn't as assertive and got me an appt. for friday...and now, i feel like i don't want to wait that long.

what i find most frustrating is that i have tried to be proactive about this from the beginning and trying to avert an emergency situation, and of course, our medical system only does 'tertiary care' and now i am feel in a real bind.

please hope that i don't have another attack before seeing the doctor! (or at all)

thank you for all of your help. you are lifesavers!

later alligators!

emily

[steph37822]

oops

[blackwolf]

Dear Emily, I faced 6 1/2 months of just what you where discribing. I was pregnant at the time and couldn't have surgery till 3 weeks after my daughter was born. I had a PIC line put in to get enough fluids, nurishment and meds. Keep fighting girl!!

Blackwolf

[DancingLight]

thanks y'all!

just a lil update...

am going to see my PCP (who i like) TODAY at 1:45...yeah!

so, i will try to report back later....

steph...good to see you here on potsplace! i've missed your posts since i haven't been on ndrf! thanks for replying to me! i hope you find some relief too. i haven't tried phenogran, but have tried zofran.

emily

[yogini]

Emily,

I don't know much about GI issues, but I am so glad you're able to see your doctor today. Please let us know how it goes, and get well soon!

-Rita

[Jersey Girl]

Emily, I hope you feel better soon and can get some answers from your doctors soon. I know that I am sensitive to many foods and do better with slow roasted, plain foods. I also don't tolerate foods with a high glycemic index, i.e.most desserts (which taste good on the way down.) Take care. Martha

[geneva]

Hi Emily, I haven't been on much the last couple of weeks with all the kids home for the holidays so I was so sorry to log on and see that you have had another painful attack. I can understand how frightened you must be. Several years ago I went to 2 different ERs, almost doubled over in pain. They did the xrays etc. Both times I was told it was "probably" IBS. One dr. said add oranges to my diet!! and the other said he wasn't about to prescribe meds considering I had POTS.

I am really glad you are pursuing this further and it is great that your Mom will call as your best advocate to get someone to see you and get you the help you need. I know that the Levsin drugs do help me some when I get the pain but I don't vomit as you have which does make it seem more like gallbladder than IBS.

I am really worried about you Emily! I have been in a GI potshole myself the last 6 days and bland food is my diet but I know I haven't been as sick as you. Please keep us posted on when you see your doctor and don't let the medical carousel get you down. You KNOW something is wrong and there is a doctor out there who can help you....just keep pushing.

Sending you lots of positive energy.

[Gena]

Hi Em,

Just checking to see how your doctor appt. went today...were you able to get him/her to perform some further testing on you? I sure hope you find the source of your pain and a solution very soon. I hate to hear that you're in so much pain. Just curious if you've had your pancreas checked out in addition to your gall bladder?

Keep us posted!

[DancingLight]

geneva, i am glad that you posted...i was hoping to see your name! i was wondering if you were okay, but so many people are not on much over the holidays, so i was sort of waiting. glad to see you on again. i was wondering, since we have both been having a lot of GI stuff all at the same time if yours was similar.

the vomiting part is what makes me think it isn't ibs. and the fact that i am no longer having an 'attack' and i feel worse the past couple of days than i did a week ago.

here's the update....

went to the doctor today. he was really rushed so it was a little hard. but i got what i wanted...A CCK HIDA SCAN. now, if the nurse would just call with the time of the scan...

if it wasn't for your help here i would not have known what to insist on. at least this will help on the road to discovering the problem hopefully.

he still said it could be ibs...

but today, when he pressed on my belly, my gallbladder spot hurt and it hasn't before. i also had a bit of a temp (for me). 99.5. i am like so many of you and always have the low body temp, so that is like a fever for me.

i feel green still. i look just as beautiful! not! should i send a photo in for the webpage? ha!

now, i just hope i don't have the gallbladder go into spasm with the hida scan like you did nina!

later alligators!

emily

p.s. seen any good moivies lately??? could use some suggestions seeing as i am on a roll these days since i feel so crappy!

[geneva]

Emily, I am so happy that the doctor today is more willing to check things out. Of course, it may not be your gb, but with POTS the norm is to rule everything else out first, right? Of course it is...what's the matter with those doctors up there? (LOL) It sure seems like eliminating the gb is a good plan, especially since you have the vomiting which would seem to distinguish it from IBS.

Over the last 2 weeks my GI system seems to have slowed down several levels....do you get that too? I may have waited too long to realize that and take corrective measures (prune juice --yum). So, I have been having a lot of pain but manageable with the anti-spasm med. I hate waking up with the pain cuz I know that my day will be spent thinking how to get things moving, not eating anything good and putting a heat compress on my tummy all day.....a waste of a good day. Isn't it frustrating?

Did the doctor who gave you Levsin tell you to take it every day or as needed? I take Hyosycamine (?sp) which I think is the generic. It really helps stop the pain caused by the spasms.

I hope you can get in to do the Hida scan this week. I will be thinking extra good thoughts for you and hoping that you can get plenty of rest before hand.

feel better Emily!

[MightyMouse]

Em, let us know how the CCK hida scan comes out--they came in and told me before the test was even done! My surgeon was in the hospital and they called him down to nuclear medicine--and then he and the radiologist came in and told me about my naughtly gall bladder. That was Friday, and I had my surgery 3 days later on Monday. The pain was gone immediately--yes, I was sore, but not as bad as the attacks I'd been having.

Just so you're aware, I still sometimes have attacks that are similar to gall bladder--but they think it's the sphincter of odi, a valve that bile passes through. Next time I have one of those attacks, i'll call my gi doc and ask for the MRCP to check out the sphincter...

As for movies--we watched a few on the plane to and from Mexico. Shark Tale and Elf-- got some giggles here and there. I also got the first two seasons of Ren & Stimpy as a present from a friend--and have watched a few of those. Lastly, I like to watch Sponge Bob--it's only a half hour, about as long as my attention holds out.

Nina