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Gallbladder Disease & Pancreatitis. Im Scared!


SadiesMomma

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SadiesMomma Apprentice

WEll, its been a long week and weekend...

I was having some severe upper stomach pains, which seem different than my accidental ingestion pains which are more lower and to the left.... Anyway, I went to the hospital, they did some tests and I was assuming theyd just send me home like they always do but thats not the case this time. THe doc came in and said "You have pancreatitis which was caused because you have gallbladder disease. A stone rolled into your common duct. We'll need to admit you and you'll have to have surgery to remove your gallbladder and the stone that cause your pancreus to become inflamed."

--- By that time I was totally a wreck. I was crying because I was so scared. I stayed in the hospital on the surgical floor, they did a million more tests....I was on an IV for fluids, antibiotics, and pain meds that totally made me a nut and hella itchy!!!!!! .

...Then shifts changed the next morning and another doc came in and said "Youre too young for this disease and far too healthy, were releasing you home, your fine." I was soooo pissed, Healthy.. Hahaha what the hell, he doesnt even know obviously. Ive been sick for 9 years dangit and still nothing......... Theyre throwing me back and forth.

Long story short, they sent me home with a million meds and they forgot to tell me I cant eat.... cause it causes more pain cause it makes the pancreus work. Uuugh.. I went back to a different hospital and then they did some tests as well. My levels were high but they cant do much till my pancreus is not inflamed. Im not sure when the hell is going on. I have to go to the doctor tomorrow (monday) and see then what they think, im scared. All i know is i am in pain and cant eat anything but clear fluids... and even those make me sick. AHHHHHHH

Please tell me Im not alone!!!!!!

Thanks for listening to me rant... im just so scared.

Anyone ever had this similar thing happen?


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lauradawn Explorer

I have no clue!!! But I just wanted to tell you I am sooo sorry. You have enough to deal with already. I feel for you :blink:

SadiesMomma Apprentice

Thanks Thanks Thanks for your sympathy. :)

debmidge Rising Star

Heather: You're body has been thru a lot of stress. Hope this gall bladder episode is the last thing and you'll start to get relief mentally & physically.

Debmidge :)

Aightball Apprentice

Heather>

If/when they do take your gallbladder, rejoice, lol :). I had my out just about a year ago and I don't miss the damn thing!

Good things to avoid for gallbladder till you get it out:

spicy foods (I went nuts about that one, love my heat)

excessivly greasy foods

That's all I can think of off hand. My trigger was spicy food. The food that sent me to the ER with the pain in the shoulder blade was some three alarm spaghetti! But now that I've got no gallbladder, I can eat all the spicy foods I want and as long as I watch the grease for me, I get along fine :).

Good luck and I hope you heal fast!

-Kel

SadiesMomma Apprentice

Ok, I went to the doc today like the hospital said to do....

She was absolutely a schmuck, AGAIN!!! She couldnt even remember my food allergies.... Shes a retard I swear!

They said that my levels are high of amalyse (sp) but nothing else shows a problem so basically I have to wait till I have my colonoscopy and upper GI endoscopy. Uuuuuugh thats not for a whole month (4-30-04). I am getting pissed!

ALl they said was to stay on a liquid diet and if i feel up to it to start eating low fat and low grease foods. I dont anyway but they just dont get it. As for now I am stuck drinking green tea and eating chicken broth. Eweee!

I have lost 5 lbs since thursday, and today is only Monday (5 days)... thats a lb a day. EEK. I need to get some food in my body that wont hurt me!! Anyone know things I can have under my strict diet restrictions. I cant have the drinks cause im lactose intolerant and cant have corn. I cant have nuts, soy, dairy, eggs.. yadda yadda.... PLEASE HELP... i need to get this weight back on and get some energy. I can barely write this, let alone go with my daily routine.

Guest gillian502

I am so sorry to hear about all of this. It must be total hell for you. I've been waiting a month for my endoscopy and colonoscopy, too, and it will finally be done a week from today. As for what you can eat...maybe hot rice cereal, or hot kasha cereal (neither needs milk added) lots of bananas, pears, rice cakes, maybe even a little peanut butter? Also clear broth, jello, applesauce. This is all that comes to mind right now...so are they saying now that you do or do not have pancreatitis? From what I've read it's painful but usually very treatable and not too scary, so try not to worry. Of course that doesn't make it hurt less or provide any answers either! I hope the doctors can give you a more firm idea of what's really going on soon. Hang in there!

Gillian


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seeking-wholeness Explorer

HEATHER!!!!!

Oh, my heavens!!! This is the last thing you needed right now!

I just called my friend who has experienced pancreatitis firsthand and asked for some advice to pass along to you. Here's what she said:

1.) Ask if the doctor checked your lipase levels in addition to your amylase levels. If not, request it.

2.) Eat NO fat AT ALL. Fat consumption triggers the release of the enzymes that are essentially trying to digest your pancreas right now! (If your amylase levels are high, there MAY be another class of foods, like maybe starches, that you will have to eliminate until you recover--but I'm not sure about this.)

3.) If necessary, stick to water for a few days. If even water makes you sick (like it did to my friend), go back to the hospital and INSIST that they admit you for IV hydration.

Apparently, complete bowel rest is the only effective treatment for pancreatitis. Is there any way you can get help with your daily routine so you can rest and heal?

If you are interested in communicating with my friend, just drop me an e-mail and I'll send you her e-mail address (she suggested this, so don't feel like you're imposing!).

Hang in there. You will recover! It won't necessarily be easy, but you can do it!

((((((Heather))))))

SadiesMomma Apprentice

You guys are soo great... Its very hard getting support around here except by my great boyfriend... Everyone else just hasseles me with a million retarded questions thinking theyre helping but when in all actuality theyre just pushing my buttons. :angry:

Sarah, that would be grrreat to get your friends e-mail addy, you could also give her mine. SadiesMomma@hotmail.com :D

I am so frustrated with doctors right now.... I have been eating cream of rice starting this morning and I was a little iffy and I decided after my tummy settled after the rice to eat a little bit of mashed potatoes (upon my stupid docs request) and I was dying till i took a ton of vicodin to mask the pain. Its helping but I am by no means in good shape. I should have read this post before eating anything.. oops! :huh:

For me, rest rest rest to get this to pass. Hopefully I'll be ok, well I know eventually I will be. This just sucks! A LOT! Im hoping that something will come of this soon! but, I have to wait till the 30th. Dear God, I hope I am not like this till then. And what if this has passed and there still is a gall bladder problem, will they see that with a colonoscopy which is scheduled, or the upper GI endoscopy that they may still schedule? Uuuuuuuuugh! :o

Well, for now home life is laid back. I had an Aunt who was taking my daughter to a city a few hours away to take her to the zoo and see "The Wiggles" in concert, yadda yadda so I will have till Wednesday to relax. I miss her so much, it almost seems harder to get better without her cheery smile and laughter around filling the room. :(

I'm a big mush ball... sitting here crying for no reason, Sadiess ok, I'm gunna be ok, lifes not over cause my dishes arent clean....

Geeze, I love you guys, thanks for being so supportive!!!! :)

wildones Apprentice

If you have a stone stuck in your common bile duct, you need to have it out !!!!!! SOON !!!!! My son had a huge stone stone stuck in his common bile duct and pancreatitis, when he was 4-3/4 yrs old. You are not too young !!!!

The radiologist came in to check him out, when he was having an ultrasound, to find out why he was having severe episodes of pain. The radiologist was very concerned about him, and wanted to be certain that we were going immediately upstairs to see my son's GI doctor. The drs receptionist would not let us talk to anyone, so I left the films for him. His PA (who has since been fired :angry: ) dismissed the films, and the GI doctor did not get the report from the radiologist until the next day, because the radiologist had assumed that we had been taken care of by the GI doctor.

We already had a cholycystectomy (gal bladder removal) scheduled, but when the GI doctor saw the radiology report they called us right away, scheduled an emergency ERCP (proceedure to try and remove the stone stuck in his common bile duct). The proceedure didn't work, and surgery was scheduled for the next day.

The doctor who dismissed your problems is VERY WRONG to have done so !!! If you have a stone stuck in your common bile duct it is an emergency.

PLEASE be seen by someone who knows what they are doing ASAP !!!!!!!!!

My email seems to be not working properly, but if you would like any more info I will keep checking in here, because I am concerned about the care you are getting !!! NOT GETTING actually

Lorraine

zippyten Newbie

Heather,

I don't have anything really constructive to add, except my compassion and support, because I know nothing about these particular medical problems. But your whole story boggles the mind. I can understand doctors not knowing enough about celiac, that's bad enough, but pancreatis and gallstones in common bile ducts?! There shouldn't be differing medical procedures on these things, it should just be a clear solution. One thing I DO know from my own and others' experiences is that no doctor or hospital should ever send you home to wait an unreasonable amount of time if you are in a lot of pain. Pain is a signal there is something very wrong with your body, and your primary doctor is doing you a big disservice, not to mention putting you in possible danger, by making you wait for any further treatment. Especially if you can't eat anything! Can you get a second opinion or go to a different, better hospital? I would not be in a position to ever offer somebody medical advice, but I do urge you to be proactive -- don't wait any longer if you are in pain, insist on treatment immediately. Please let us know how you are doing and hang in there.

Ellen

SadiesMomma Apprentice

I have gone to a 2nd hospital whom only checked records of the 1st. Uuuuugh, it is so frustrating not having anyone who knows what the hell is going on! My doctor is a schmuck like I said before.... and I can't switch docs because I am on state insurance, they choose your doc. :(

As for the things going on.... the doc says its not a stone, they apparently didnt see any stones and the other docs I went to just looked at the records of the hospital and said what the 1st place said... which was nothing really but that SOMETHIGN is wrong, thay just dont know what.

My doc says my pain is the pancreus and gall bladder area but nothing apparently looks bad according to the tests the hospital did..... What now?????

Hum??????????

YankeeDB Contributor

I've read that coconut oil does not digest in a manner similar to other fats so, Heather, you might want to look into that. You can buy it on the internet. It is a medium-chain triglyceride that does not need to be broken down like other fats and it is high in calories. Just a thought. Best wishes!

wildones Apprentice

What test did you have done ? Do you know what exactly the results were ? Can you get a copy of the tests ? Can you get a copy of your radiology reports and the the films themselves ? Did you have an ultrasound ? Did they say it looks like you have 'sludge' ? as opposed to a stone/stones ? Who was the doctor/radiologist that said you had a stone in your common bile duct ? Can you talk to them ?

Sorry about all the questions, but it is important that you are 'armed' with all th info you can get, in order to get a proper diagnosis.

Where do you live ? Maybe someone here can recommend a specialist that deals with and is knowledgable with the consequences of celiac ? There is a list on this site of drs recommended in different areas.

Please don't give up on finding a good place/drs to help you. Do as much research as you can, and don't take anything that doesn't feel right as an answer !

Good luck, I would be happy to help you with finding any information you might need.

Did you say in your original post that your drs are going to do an endoscopy and a colonoscopy ? What for ? It will not give them any info on your pancreas, liver or galbladder, isn't that were your problems are ? Please don't let your doctor go unchallenged about you being 'too young and healthy to have these problems'. He can call my son's doctor to confirm that a 4 yr old can have these problems !!!

Lorraine

SadiesMomma Apprentice

Well, I was back in the ER again lastnight. They pumped me with IV fluids and were rediculiously gay! (no pun intended.) Anyway, they pretty much said I was fine and its my anxiety and im pretty much only feeling the pain cause im so worked up.

HA, what the hell do they know. Wouldnt your anxiety be up if you were in pain so long and they couldnt figure it out.

As for my levels... only amlyse was up but was lower than the 1st visit. My Lipase test was negative. I have had an ultrasound but not yesterday, it was a week ago and they said everything "looked fine".

We are looking for a different doctor in the Madison Wisconin area because were going to Wisconsin to visit family. Hopefully I can see someone out there. As for Washington State... Im not sure with Docs.

There talking about doing another test.... Im not sure what its called because they had me so out of it lastnight. Uuuugh!

Anyway, im gunna go lay down and get some rest. Wish I could eat but I am still on a liquid diet. I've lost 5lbs already as of Monday..... and still havent eaten and i am beginning to look like bones... AHHHH I worked so hard to gain the weight.. and to lose it all so quickly. Im probably down to 114 or 115 now. :(

SadiesMomma Apprentice

Its Thursday,I have lost a total of 10 punds BUT the good news is I am feeling better. Im still iffy and my anxiety is horrid but all in all I am ok. :)

Gunna go get somemore rest.

outthere39 Rookie

I am sorry and I hope everything continues to get better. Being a farily new celiac, I still have my bouts with anxiety. I know your situation is a little different, but I still have some ability to relate. Stay confident and strong...

Richard

Wilmington, NC

SadiesMomma Apprentice

Thanks so much for the support.

Today (Friday) is much better. I was prescribed some meds for sleeping and anxiety and such, started seeing a therapist..... Things will get better, They have to!

judy04 Rookie

Hi,

I was reading your post when I noticed that you were taking Vicodin,

You might want to check it out because my reference book says

it is not gluten free. Hope you are feeling better..

SadiesMomma Apprentice

Its the Generic Vicodin... Hydrocodone.. I saw it on the Celiac.com medications page. :)

zippyten Newbie

Heather,

Don't give up. As hard as it is to find a doctor who will get to the bottom of this, you need to be persistent. I want to be mindful of not "doctor-bashing" because a couple of people felt this was happening on this message board. But I do want to say that I find it a warning sign when any doctor concludes fairly soon that a patient's symptoms are caused by her own anxiety level. In short, the doctor is saying that because he/she can't figure out the source of the pain yet, there IS no source of the pain except you. That you are causing it, not something physically wrong. I believe that there are certain doctors who are way too quick to dismiss a patient's complaints with this diagnosis, and I am clearly not the only woman (or man) who has had this experience with the medical profession.

At the same time, I do believe there are many good doctors -- I was fortunate enough to find one myself -- who take pain and other symptoms seriously even if the cause is not readily apparent and they do a painstaking, thorough job in order to figure out what's going on. I also think that a good doctor does not let his or her ego get in the way of helping a patient. Many good doctors get stumped and they will often call other specialists themselves to ask for advice and input. I hope your experience in another state turns out to be better. I hope that you feel better soon.

Ellen

  • 2 weeks later...
sweetie101282 Apprentice

Heather!

I'm so sorry I didn't check this post earlier... I just went through the same thing..unfortunately over christmas. With me, I had the pancreatis pain for a couple days before I went to the emergency room, when i went they said my amylase and lactase (sp?) were really elevated, one was around 1000 I think..obscenely high! They admitted me and sent me home the next day saying i needed to have an ultrasound soon to see if i had a stone. Well...christmas eve my dad makes really delicious gluten-free coconut shrimp (deep fried) and I end up back at the emergency room (They wanted to admit me...i said no way!) Anyway a few days later i had the ultrasound and everything came back normal so they told me to go back to my GI doctor that had diagnosed me with the Celiac disease. I went and he said that sometimes a small stone can get wedged in the pancreatic duct and sometimes they cant see that with the ultrasound so he scheduled an ERCP (something like endoscopic retrograde cholangio pancreatography ... whew). Basically they go down into your upper gi tract and put a camera in to physically view the structure of your gall bladder and duct. In my test he said that while i didn't have a stone, it was likely i HAD one and passed it because my duct was irregular shaped and showed some scarring from when the stone was there. He also checked to see if secretions from my gall duct had gone murky, that can cause you problems too. Possibly ongoing problems like you're having. Sorry this was so long but I'm kinda long winded sometimes. Basically, the ER docs you saw were pretty ignorant and I recommend going to a GI doc so they can check you out right away. If they do need to take your gall bladder I've been told its kinda a blessing because A) you dont really need it and B) you'll never have pancreatitis again!

-amy

  • 5 years later...
deezer Apprentice
Its the Generic Vicodin... Hydrocodone.. I saw it on the Celiac.com medications page. :)

Heather, how did you come out of this?

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