GI attack #3...Need guidance!

[DancingLight]

where is your sphincter of odi located? nice name for a body part.

nina, i am a bit worried if they need to do surgery quickly like they did for you. as i have never had surgery before and am a bit scared of the drs. here handling the POTS stuff. so, we will see. i have not put anything in place for that...i didn't want to 'jump the gun' but maybe i should? i'd better get reading past posts on surgery with POTS, huh?

thanks for the suggestions...what channel is spongebob on and what time? that sounds just perfect for me! i will have to watch it. i loved elf.

okay, going to bed now and hoping for an attack free night. my dr. said no more waiting an attack out...that i have to go to the ER if it happens. i wasn't too happy about that!

later alligators!

emily

[Guest tearose]

Hey Emily, hope you got through the night and are a bit better rested. I was so glad to see that you got to the doctor! I'm hoping the scan will offer exactly the information you need!

Enough being green! That must be the bile rising up

Don't worry about surgery. We've been through that and will remind you what to ask for...hydration and baby doses of drugs!

keep us up to date green one, tearose

[goldicedance]

Emily,

I am so sorry that you are now having GI problems and that your doctor won't order a HIDA scan with CKK. My experience was identical to Nina's. The ultrasound showed some sludge in the gall bladder --not a big deal. The HIDA scan showed everything was fine. The GI specialist said it wasn't my gall bladder. However my excellent internist knew that I was still feeling horrible--hospitalized for over a week, couldn't eat, strange colored and frequent bowel movements, cramps. She did not take the GI specialist's word. She ordered a HIDA scan with CKK which showed my gall bladder was not emptying. I then had surgery that evening. I also had my appendix taken out at the same time since all the docs thought it best to do it all at once. It turned out that my gall bladder had been functionally poorly for a number of years--I had adhesions and lyses that also had to be dealt with during the surgery.

My advice. like the others, is to continue to pursue getting the definitive HIDA scan with CKK. Your internist can order it.

Lois

PS I'll respond to your email when I have more time and energy.

[goldicedance]

Emily, I forgot your questions about surgery---

Your POTS doctor should work closely with the anesthesiologist so that you blood pressure and heart rate are monitored 110% during the surgery. When I had lung surgery several years ago the anesthesiologist inserted an arterial line to be sure that all was going well so to say. This time for the gall bladder surgery, while my internist suggested it, the anesthesiologist didn't think it necessary--maybe better monitoring techniques. During the laparoscopic gall bladder surgery, the anesthiologist pumped in a lot of fluids.

Recovery from the laparoscopic surgery was a breeze. I had 4 tiny incisions (each with a bandaid). They healed pretty quickly. The first several hours after the surgery I needed pain killers. Ater the first day, the pain was much less.

My surgeon says that, had it not been for the fact that I had been hospitalized for over a week with the problems, was weak from staying in bed, and so forth, that they generally do the surgery as an outpatient. Some people even go back to work the next day.

Compared to the problems I was having before the surgery, the recovery was nothing.

Don't worry....Should you need the surgery, find the best doctor you can to do the laparoscopic surgery. Unfortunately for me, I had to pay about $5000 out of pocket because the doctor did not participate in my insurance plan. Apparemtly, more and more docs are opting out of insurance participation--but that is another issue.

Don't give up. Go to another doctor soooner rather than later!

Lois

[Nicole's Mom]

Emily,

I hope you got through the night without any attacks. I am so glad for you that you got the test set up for the scan. I think you are right to read some past posts re: surgery with POTS. You may find some comfort there in case you do end up needing the surgery. And tearose makes sense when she says good hydration and baby doses of drugs.

Maybe I'm just being extra cautious but something I would like to suggest is to maybe ahead of time you might want to make sure that you can tolerate epinephrine because I think that is part of what is administered during anesthesia in many cases. I think they can do a little test of sorts. (Another "test" is to get a tooth drilled and see how you react to the novacaine Actually this is how I found out I am sensitive/allergic to it and now they use something without epinephrine. But I don't think you'd really want to go that route . . . ).

Nicole just got a great movie that we all watched called "Whale Rider". It's a tender, poignant story of a young woman who is brave and determined to be who she is meant to be among her people. I think it was up for a couple of Oscars. It is well-written and the young woman is an incredible actress. It's really a lovely movie. Also on the sillier side- we saw the original "Nutty Professor" with Jerry Lewis (1963). It is Jerry Lewis's favorite movie because he got to play a different kind of role(cool cat, serious) for part of the movie (after he drinks something he made in his lab.) You might like these if you've haven't seen both already.

Take care,

Beverly

[goldicedance]

Another thought, Emily..Should you need gall bladder surgery, discuss with the surgeon about having your appendix removed at the same time. My surgeon and POTs doctor thought it a good idea because it eliminates the possible need for additional surgery down the road for a bad appendix. The surgeon said that as long as it just involved turning the scopes and did not involve an extra incision he was all for it.

The decision is yours. My thought was that anything I could reasonably do to avoid additional surgery down the road, was a good idea. Anethesia plus recovery can be difficult with POTs.

Lois

[DancingLight]

lois!

welcome back! so good to have you back on the board. i was getting worried about you! i was also really hoping you would see my post b/c you just went through this all!

my update...

HIDA scan is scheduled for friday at 9 am.

that's the news.

going to try and search for some old surgery posts before i need another rest!

oh, beverly, i loved whale rider too! and nutty professor. oops, you all will give up on giving me recs now b/c you will think i've seen everything! i think i could watch whale rider again it was so fabulous!

emily

[corina]

Emily,

I'm sorry I can't keep up with all of you as I don't reply much these days (weeks I guess) but I want to wish you succes on your HIDA scan. I hope this will give you some answers!!! I'll keep my fingers crossed on friday (well I'm having friday about 6 hours earlier than you I think, aren't you jealous about that ).

Corina

[MightyMouse]

And now for the most important answer of the day... Sponge Bob is on Nickelodeon and some other kids channels. You can look up the schedule on http://www.nick.com

Nina

[Nicole's Mom]

Emily,

I won't give up on you. I am going to ask Nicole for a list of movies that she would recommend. Of course it could be the other way around too. You could suggest movies and she may have seen them already too. She has seen so many. Just don't be too alarmed if she includes some artsy ones or sub-titled movies.

Beverly

[Guest tearose]

Hey Emily going through old surgery posts will keep you busy! I kinda want the HIDA to show it is your gallbladder but then again, I'm not wishing surgery on you, you know what I mean. I just want answers for you! My bet is on gallbladder! Are we betting this time?

Well, back to preoccupations, can I tell you a secret...what about good ole soaps? I got "hooked" on "all my children" way, way back and you only have to watch one or two a month to keep up! Shhh! No one knows that is why I try to eat lunch the same time every day!

I wish I could tell you about good movies. Funny thing, I forget what I saw, so it isn't until I'm watching them again and something seems familiar and I realize that maybe I saw it already!

Keep up you high spirits! warmly, tearose

[geneva]

Tearose, we have the same thought when it comes to recommending movies....I don't remember them, so can't think of any to suggest!!! I haven't been to a movie theatre in 4 years so I always watch movies months after they come out. I guess the last we may have seen was 50 FIRST DATES....it was really funny (I think!). The main character has more memory problems than ME (LOL). Emily, I hope you appreciate how hard I had to think to retrieve the name of a movie just for you....very tough work but you, my friend, are worth it.

On a more serious note, Emily, while I think it may be necessary to prepare yourself for future surgery, I recommend that you take it one step at a time....get through the HIDA on Friday and hopefully as Nina experienced, you will get your results on the spot. If surgery is the word, remember you have everyone here ready to "assist" you.

Sleep well.

[StaceyYount]

Hey!

Glad you are going to get that test. I hope the result will give them a way to give you relief.

Now about movies:

Many of you may know about this but Netflix is wondeful. I can spend a day looking for movies and shows I want to see and then put them in my queue and they send me out 3 at a time. They have a great selection and the best thing is that the movies come to your house you can keep them until you have watched them ( in some cases 3 or 4 times ) and then you just stick them in the mail and they send you more. No more of sending Jim to the video store and have him coming home with well I think you 'll like this or I could not find a thing. I did not realize they stocked shows to and so I am getting caught up in popular shows that I never saw.

We watched Delovely the other night and all though sad, it was wonderful.

You get a free trial and I have been very happy. The nice thing is that they have a lot of ways to search for stuff.

No I don't work for Netflix I promise!!

Hope tomorrow is a good day for us all!

Stacey :-)

[MightyMouse]

The year I was out on medical leave, I was a big time user on Netflix. After I went back to work, I no longer had any time to view movies at home--so I cancelled. However, I may restart over the summer when I'll have some time off again. They are really fast with shipping.

Nina

[Nicole's Mom]

Emily,

Nicole gets Netflix too. She gets Seinfeld episodes and Curb Your Enthusiasm episodes as well. I just read an article about the guy who started up Netflix after, in 1997, returning Apollo 13 late and with a $40 late fee. He was so disgusted - he came up with a better, more appealing way to rent movies. And now he has well over a million subscribers (maybe more- read it the other day but can't remember).

I do have 10 movies Nicole listed to present to you. You may have seen each and every one. (I came up with the 11th).

Here they are:

1. Antonia's Line (Dutch) - I think it's one of her favorites.

2. American Movie

3. Eternal Sunshine of the Spotless Mind

4. In America

5. The Professional

6. The Doctor

7. The Hours

8. Sex, Lies an Videotapes

9. Le Petite Amour (French)

10. Magnolia

11. Amelie

Hope you have a good night without any "events". Sleep well and goodnight.

Beverly

[DancingLight]

beverly!

wow! thanks! and stacey thanks! please thank nicole for that list. and nina, i will be watching spongebob one of these nights at 8 pm! very important things right!? hey, i gotta do something to try and distract me from feeling so lousy.

i may have to start a movie thread? is that too off-topic? i really like sharing our ideas. so many of us are homebound or very limited in our abilities to go out. for me, movies have become such a huge source of enjoyment and i like learning about all sorts of movies. i read all the reviews in the paper! i will make a list of my favorites too!

i haven't done netflix yet, b/c we live one mile from a hollywood video and it is easy for my mom or dad or someone to run there for me. it is only $10 a month for unlimited rentals (3 at a time, 5 days at a time) except for the newest releases. right now that is so much cheaper than netflix! but, i do like that netflix has more options, especially tv shows. we'll see...not ready to splurge yet!

okay, this has gotten off topic!

back on topic...

tearose? what should the prize be? something other than tollhouse cookies? do you think we should go with celery this time? since i can't eat a darn thing right now hardly, nothing sounds good! hmmmm....

i am not having the pain or vomiting, just feel really weak and miserable and sick to my stomach. lots of running to the potty. i am just keeping my fingers crossed for no more attacks and something from the HIDA scan. but, tearose, i am with you, i don't know if i want it to be positive or not! neither option is very good right now!

thanks you all! you are the absolute best....

oh, and geneva, yes i completely appreciate you racking your brain for 50 first dates! that is a great movie and so precious b/c he loves her and fights so hard for her despite her challenges...it is so wonderful!

emily

[DancingLight]

hey y'all!

are you as sick of this topic yet as i am?

so, just wanted to let the worriers out there ( ) know that i am back from my HIDA scan with CCK.

The CCK felt gross and gave me cramps and junk, but no major problems. I just feel terrible.

So, I will let you know when i get the results...hopefully today...

for now, i am so tired i am writing half in caps and half not...so that is really bad...at least i could choose one or the other!

so, need to rest now, but thanks for all of your good thoughts and help.

also, i emailed my POTS doc and he said...this does NOT sound like POTS or IBS, and really confirmed everything you all have been telling me and what my 'gut' is telling me (in more ways than one)

later alligators!

emily

[Guest tearose]

Good, now that's behind you!

That was a fast nap. Do you do powernaps? You remind me of the energizer bunny.

Now l can't wait for the phonecall...are you going to call today or let them call you?

Are you still green?

warmly, tearose

[DancingLight]

hello all....

HERE IT GOES...

TITLE: IT'S NOT EASY BEIN' GREEN.

my gallbladder is NOT functioning normally. the ejection fraction was 29%. the ducts were not emptying properly.

so, i don't know the full report b/c the nurse didn't even know all of the details except that i would have to have my gallbladder out.

she said that my PCP will talk with the GI doctor (should be interesting since the GI doctor did NOT believe me and also said he does NOT believe in the HIDA scan).

then, he will talk to the surgeon.

i don't know whether to be relieved or terrified!

i am in touch with my POTS doctor and just let him know the results va email so, hopefully he will have a surgery strategy. he's the best and i know he will help me get through!

NOW, i just want to walk over the that GI doctor, the doctor on call last week and the ER doctor and say LOOK, THIS IS WHY I WAS SO SICK! THIS IS NOT IBS! IBS MY FOOT!

sorry, i am definitely mad about their 'gall'!

okay, that's my news for those of you 'in suspenders!'

now, can i nap or not? i'm a little edgy.

emily

p.s. tearose...no way am i the energizer bunny! it's just the laptop is right here with me and i couldn't relax very well. no, i don't take powernaps, i take 'real naps'...i am like you...it takes all my energy to take care of me...so, an energizer bunny i am not!

[Guest tearose]

Hooray! This is a problem that can be fixed!!!

You made me laugh...this GI doc sounds just as lousy at the one I had...puts the gall in gallbladder

The surgeon and pcp just didn't even talk to the GI doc in my case.

They gave me a week to build up my protein levels and then I had the surgery.

Thanks for the update!

Now go take a nap or nibble on some applesauce...

talk to you later, we'll start thinking about the surgery and anesthesia and getting you ready...

sending you soft, comfy, warm slippers, tearose

[DancingLight]

hey tea!

i had to add a p.s.

THANK YOU ALL SO VERY MUCH FOR GIVING ME SO MUCH STRENGTH THROUGH THIS TO PURSUE A DIAGNOSIS AND KEEP FIGHTING FOR AN ANSWER.

I COULD NOT HAVE DONE IT WITHOUT YOU...AND I AM NOT BEING TRITE!

HUGS, AND I'M WEARING THOSE WARM SLIPPERS!

NIGHTY NIGHT!

emily

[Merrill]

Oh, Dear! Well -- as tearose said, at least this is something that can be fixed! And no more attacks from then on out!

Giftie's in the mail.

Find out if there's anything in your current diet to be avoided until surgery-time ... and take care, sweets.

m

[MightyMouse]

Hi there... I didn't want to tell you how bad the CCK makes you feel if you are having gall bladder problems because I thought it might scare you out of doing the test... if you weren't having gall bladder problems, you wouldn't have felt too bad because your gb would have just emptied itself and that would be that.

Sorry it hurt a bit... BUT, nah-neee-nah-neeee nah-nah to your doctors who didn't believe you.

Honestly, don't be scared about the surgery, if that's what happens next. They've gotten so good at those that they're now same day procedures for most people. Yes, you'll be sore, yes, you'll be tired, but I swear it wont hurt as much as a gall bladder attack!

Feel better soon, and let us know what happens next! Nina

[Ernie]

Hi,

Congradulation for standing up for yourself and to finally get a diagnosis. What an adventure!

I would like to be a little bird and see how the GI doctor reacts when he finds out about the diagnosis.

Have a good rest.

Ernie

[Nicole's Mom]

Emily,

I'm glad you got the answer. Pooh on that doctor who said IBS. I'm glad you have something that can be fixed- yet sorry you have to go through the "procedure".

Already thinking good thoughts for you,

Beverly