MYSTERY CONDITION

I'm a 20 year old girl and have been very very sick with stomach problems for the past year. No doctors have been able to diagnose my condition or successfully treat my symptoms with drugs or surgery. I had my gall bladder removed 11 months ago after suffering from nausea, vomiting and pain for a month.

My symptoms continued after my procedure and worsened over the year. I am always extremely nauseous and vomit several times per day. I have been having extremely sharp pains in the upper right quadrant of my abdomen that occur frequently and randomly without any relation to activity or food. I always feel full, never feel hungry and have a difficult time eating food. I'm always dizzy and feel like things are spinning around me. I have a tough time walking uphill and upstairs, and I need to walk around slowly and lean on things.

After an ultrasound revealed that I had a fragment of my gall bladder and multiple stones remaining inside me I underwent a 2nd lap choly to remove them six weeks ago. The surgery hasnt helped any of my symptoms. I'm even dizzier and can barely walk around. The right abdominal pain hasnt improved; it has actually begun to hurt on the upper left side as well. I have a very hard time falling asleep and staying asleep at night, I also have cold and hot sweats at night.

The only concrete things I've been diagnosed with are reflux, lactose intolerance, low blood pressure and chronic inactive gastritis. I tested negative for conditions including chrones, celiac, h.pylori, stomach cancer, adrenal problems, and gastroparesis. I've had every GI test multiple times and have seen an abundance of doctors, none of whom have been able to legitimately help me. The only abnormal things my blood tests have shown include anemia and an ESR (elevated sed rate) thats fluctuated between 20 and 80 over the past year. I've stopped going out, hanging out with friends, working and doing things I used to enjoy. Feeling horrible for the past year has made me depressed and frustrated.

My chronic nausea hasnt been helped by any drugs including zofran, phenregan, composine, tigan, kytrol, and several others. I'm currently taking neurontin, paxil, nexium, coenzyme q10, riboflavin, calcium, benadryl (to help me sleep) and iron supplements. Ive been through a large variety of other drugs that either havent helped or caused weird side effects.

For anyone who has taken the time to read this THANK YOU SO MUCH! I would greatly appreciate if anybody has experienced similar symptoms and has advice or questions.

THANKS!!!!!!!!!!!!!!!!!!

[InYourEyes]

Oh that's too much for a 20 year old to take . One thing I know from reading many many forums that doctors mistakenly remove the gall bladder and it causes even more problems later but did you had big stones ? I was suffering from mysterious spastic colitis and no doctors were able to help me too . Do you have trouble sleeping on your sides ? This may indicate colitis spasms . Are you afraid to put food into your mouth that that is going to make you even more sicker . You may be having an allergic reaction who knows . Do one thing . Totally cut back on wheat for few weeks if possible even if you don't have celiac . And there was an ayurvedic herb called guggul which helped me eat again . It is widely used for thousand of years to treat joint pains , etc so it's an anti inflammatory without side effects . I will send you the link where to buy . Do you feel bloadted all the time ? I also suggest to you IMMUNE26 made from egg powder . It balances the immune system and comes under new class of supplements called transfer factors . The link to order is here https://www.legacyforlife.com/legacyteam  , don't take paxil , try cymbalta instead and see if your condition improves but please please do order immune26 , before cymbalta I could barely sit on sofa for more than few minutes because my stomach would all bloat up , took it for 4 months then quit due to insomnia but it really helped me , and now I warm 1 cup of water 25 seconds in a microwave oven , mix 1 scoop of egg powder until it dissolves and drink it , dosen't taste bad at all but some plain water after that does the trick . Ok have you been tested for lyme disease . It's called the great immitator because it immitates symptoms of other conditions / syndromes . Are you sure the bile ducts from your live to your intestines aren't blocked up ? In mystery diagnosis on discovery channel , they had one show where some sort of tube was blocked up and causing great misery and no doctor was able to figure out why but if you try hard enough then answers may very well come for you . Right now look into the immune system and ways to boost it . A good place to learn about transfer factors in www.4tf.com but I recommend IMMUNE26 first . Take it for a month . It's totally harmless and may even help . If your downward spiral continues then you will definitely have to seek more help from renowned hospitals such as john hopkins , yale, columbia , etc ... local doctors just don't have much experience . Also contact the National institute of health . It is clearly some sort of blockage , inflammation or an immune system malfunction where it attacks the harmless food particles . btw , do you feel better if you don't eat ? Do you have asthma and/or knee pains ? Pls stay in touch . Two are always better than one . Who knows your suffering may be coming to an end . Pray to God and ask for all his guidance and help , for strength too , you need it , can't do it alone , hey add me , I have some more advice but later . Because you are at your wit's end I could consult some ayurvedic/homeopathic doctors for you . Don't forget to pray . The universal father always listens and no prayers are gone unsanswered . Take care , how can I say take care when you're too sick , inspite of all this , try to think positive and remind yourself , do positive affirmations that you are healing , that it has already started and your body now restores itself to its normal state . Brain has a powerful influence on the body and don't ever give up , it's easy to give up but if you think such thoughts then rest assured it's going to be over soon , No never loose HOPE my dear , never.....God bless , John

[meg2389]

I am also 20 years old and had my gall bladder removed . No stones were detected in mine, but the surgeon said it wasn't working. This sounded kind of odd to me, but I went ahead with the surgery. It will be two years since having the surgery this August, and my symptoms are worse. I constantly have pain in the upper part of my stomach after I eat. Not to mention another annoying symptom that only came after surgery... diarrhea...

[meg2389]

Hang in there though! Update us with how you're doing. I'm seeing another specialist, and I'll let you know if I discover anything that could potentially help your situation. Good luck!

[severepain]

Hi girlfriend!  Bless your heart!  I have had lots of stomach trouble over the years, and especially the last 5 years including extreme for 2 1/2.  They took out my gallbladder 01/07 just because I was so sick they didn't know what else to do for me. It came back saying it had sludge in it, but not any stones.  I have severe stomach pain and never know what I can eat that will set me off. meg2389 sounds like she could be a good support for you too, which is extremely important with what you are going through!  Don't feel alone because you are not, and check out medical mysteries on TLC when you get a chance.  I saw one that was on tyrosime in your body not being broken down properly and that will make you very sick.  I may try to get my adrenal glands check and or get a MRI also!

I am 44 and I have two daughters 25 and 23 and both have had some stomach trouble too!  John had some good suggestions, but one thing I know for sure if at all possible GET off that neurotin or you will never be able to function!

Please email me if you want to talk more in depth about all this karen.***@****.  It is so helpful to have someone that understands.  It seems like families get frustrated when doctors don't have a quick fix!  And Yes, John is right also about praying-God will help us, we just have to have faith and know that there will be relief, and in the meantime, maybe we can help someone else!  

You are so pretty and sweet, and I know that you will be healed!  I am going out of state and seeing a well respected gastroenterology specialist in Minneapolis, MN.  His name is Dr. Jimmy Levine if you want to look him up.  He specializes in many stomach diseases.  

Best of luck and keep us all posted sweetie!

Blessings,

Karen

[InYourEyes]

Removal of the gall bladder is the biggest mistake of all ... it is necessary for digestion of fats ... This immune26 egg powder has really helped me , they are transfer factor molecules , they teach your immune system and brings it in a balanced state . To restore homeostasis balance there is a great practice of breathing exercise in yoga , called pranayama or alternative nostril breathing , it brings both the hemispheres of the brain in balance thus restoring homeostasis balance . The brain has its own pharmacy molecules called neuropeptided which instructs cells what to do and how to heal . Our body renews itself every 6 years of so ? That means each and every cell in our body has been replaced but the diseased state still continues , because the disturbances originally occur in our energy body . The book virtual medicine was of great help to me . I suggest all of you who are having issues with your gut to try immune26 , I already gave the link in one of my above post . By Practicing alternative nostril breathing , people swear they have brought diabetes , high blood pressure , ulcerative colitis in control when nothing was helping them . It takes advantage of our bodies own inate power to heal itself . No doctor could do that for us . They only mask the symptoms . It will take upto 6 months before you start noticing any effect . That's why I say have patience and faith in God . If bad times come without asking then similarly good times will also come . I will give details how to practice this ancient breathing exercise soon . Do it 30 minutes twice a day .

[severepain]

Thanks your are the bomb!  I will try your suggestions!

[Matthew007]

couple of things come to my mind..I had my gallbladder removed and was dealing with severe nausea like you are...

There is SOD, which i'm sure your doctors have probably talked about and you could try doing a MRCP just to see check for inflammation in the bile duct...*if your liver enzymes are elevated* that would explain a few things..it happens after gallbladder surgery and cause cause nausea and pain like you're saying.

One of the things you said was you get hot flashes and cold flashes and can't sleep.. and have bad bad digestive issues (throwing up and such)...mmmm that suggests also...sort of a reach but you could have your thyroid checked out.  It's a simple blood test (make sure you test for Free T3 and Free T4 if you do since lots of doctors only test what TSH levels are..).  When your thyroid is messed up it can slow down your digestive system all the way to a halt..and also causes insomnia..nausea...anxiety.. hypothryroid issues usually affect women more than men.  That would explain a lot of things...it's common and comes on usually after a big infection.

since you're lactose intolerant, that means you're low on lactase..probiotics can help but before you do that i'd get tested for celiac disease and even if it's negative go on a food elimination diet without soy/lactose/wheat/gluten... celiacs as a side effect get lactose intolerant so that's why I mentioned that..plus even if you are negative celiac on the blood test you still can be intolerant *like me*  it's hard to diagnose celiac people..but maybe you'll get lucky on a blood test but like I said i'd go on the elimination diet while you're sitting around looking for answers.

so what you could do is hit all those three areas..go on that diet for 2 weeks and see if you improve on your symptoms, get checked for thyroid/celiac :S hope you get feeling better that's really lousy (I know the feeling i'm nauseated too 24/7 but i'm recovering I think..food intolerances can cause havoc and takes months to recover) hang in there!

[Mshorty880]

Thanks to everyone for your support and helpful comments! I'm seeing a new GI doctor on friday and will be sure to ask her about immune26, guggul, lyme disease, and bile duct blockage. John I DO feel better if I dont eat and am occasionally bloated, but I don't have asthma, knee pain, or trouble sleeping on my sides. I've been titrating down my paxil over the past few weeks because it can cause dizziness but why did u suggest i stop taking it? I dont know if my stones were big the first time I had my gall bladder removed, but the second time there were gall bladder fragments and multiple small stones. Karen, whats wrong with neurontin? I take it because its one of the only painkillers that isnt acid based or known to cause nausea...it doesnt really help but i've been taking it for awhile.

Good luck at Mayo Karen! They have the best GI department in the country. I've been seeing every specialist at the Cleveland Clinic, which has the 2nd best rated GI program even though they havent been much help to me.

I'm beginning this 3 week program at the Cleveland Clinic for chronic pain rehabilitation. The first 2 weeks are inpatient...I'm not positive what it involves but there's a chance it will help so I'm trying it. I think it's like PT, OT and appointments with more specialists. I've considered going to Mayo, Hopkins or another hospital just because Im so frustrated but I'm going to see how this program works out first.

Thanks again for everyone's helpful suggestions and support! I'll keep you all posted!

Maddy

[Mshorty880]

I just saw your comment after I wrote thatt. I've been googling SOD a lot lately because it fits my symptoms. What else do know about it? I just looked up thyroid disorders and could possibly have an overactive thyroid but I have the feeling I've been tested for endocrine problems so Ill double check. I've been tested for celiac twice but I'll try to eliminate it and see what happens but I dont have diarrhea, much bloating, or joint pain. What were your symptoms?

[Matthew007]

Well what I know because I thought I had it too..is sometimes during gallbladder sugery they can accidentally damage or irritate the muscle that opens and closes at the end of the bile duct called the 'sphincter of oddi' (sometimes it just happens without a reason) so usually the muscle keeps the drain open unless it senses food and then it closes shut to protect food from going back into the bile duct...

if there's a dysfunction, it sinches closed and it causes back pressure to build in either you liver/pancrease and can cause serious pancrease problems and liver enzymes can back into it..eating the organ..long term this can cause diabetes and all sorts of problems.  SOooooo usually you have elevated liver enzyme numbers to support this.  Sometimes doctors will order a MRI called a MRCP that looks closely at the bile duct..if it's inflammed or shows a dilated duct that means something is wrong but usually you have to be having an "attack" during the process...so like you have to be in pain.  Usually you have upper right abdominal pain..and pretty bad nausea.  To fix it doctors will perform a ERCP and either put in a stent or just cut the muslce.  But only should be done by someone who's done a million ERCP's.  Usually people after a ERCP get really sick short term..like ER room sick because when doctors mess around with the bile duct it can cause inflammation that takes time to go down..just like your gallbladder surgery.

On the celiac thing, I have just super bad nausea and IBS-C but I was tested negative 3 times..turned out I was also intolerant to soy/lactose so i'm on a diet now and doing semi better.  But I thought my pains and nausea was sphincter of oddi since I had gallbladder surgery..thank goodness it's not... but yeah in your case you should get your liver counts checked again..if they're raised that's a big red flag but not always is it raised.. one danger though about the ERCP....if you don't have SOD and you have a ERCP you can develop SOD in the process so be careful :S most doctors hate the idea of even testing for it for that very reason.

I'd also ask to look at your thyroid numbers, some doctors will tell you 'you're fine' when honestly they didn't check for T3 or T4..the TSH numbers could be fine but if they don't do the whole panel you could be going nuts trying to find answers.  That causes hot and cold flashes and insomnia/nausea.

[Matthew007]

fact, if you look at the community board..the 'littlethings' is thinking she has SOD as well (you 2 should trade e-mails and compare symptoms)

[Matthew007]

you could have developed an ulcer after the surgery as well..(just thinking out loud..)

[Mshorty880]

thanks matthew!! I had an MRCP before I had my second surgery but it showed that my bile duct was too small to navigate through with an ERCP, even by an ERCP expert. That's why I had to have surgery to remove my stones/fragments six weeks ago. If i have SOD do you think that means I wouldnt be able to have an ERCP? My bile duct was so small before my surgery and its probably so scarred down from the procedure that it might be even smaller.

[Matthew007]

mmm that's a question for a ERCP specialist...a very good question..what they *can* do I think is from my research when they cut the sphincter of oddi muscle they do it externally not internally..they might temp. place a stent in and then as the inflammation goes down from the cut they remove the stent I *think* at a later time.. but i'm not totally sure so if you're unable to do a stent or ERCP with mammotry (important to ask about that too) then there is the option to just cut the sphincter of oddi muscle.  I think they do it externally so there's less risk.  That might be your solution. *might*

I would for sure ask about mammotry (which sometimes doctors will do a ERCP without..it tests the pressure and helps diagnose SOD) but usually they like to diagnose SOD before cutting the sphincter of oddi.  Sometimes when they do a ERCP they cut the mucle right there after finding out a high pressure reading from the mammotry test..but they prefer to diagnose first and then cut the muscle like I said.

either way getting to a GI specialist and asking to be possibly referred or even ask to be sent to a ERCP specialist would be a very good idea.  The one guy I talked to here in salt lake city was a specialist but on vague symptoms he wanted me to be sent to some ERCP specialist in indiana (a clinic that only specializes in it) because he didn't want to touch me with a 10ft. pole....he didn't want to give me SOD when I really didn't have it... so it's a risky procedure but if you're having weird sugar levels/pains/nausea elevated liver enzymes and no stones and no gallbladder that's one area I for sure would be looking into.  Usually a negative MRCP sort of makes GI/ERCP specialists a little hesitant on doing a scope..they like more evidence than that.  But I dunno.. I'm not the expert but I for sure would talk to one or first ask your GI what he/she thinks and then talk to one.

Good luck though..keep pushing and don't give into the IBS garbage..if I listened to my doctors with that IBS junk i'd be so sick I wouldn't be able to leave the house.

[Matthew007]

btw you're welcome :) (not that I did much..)

[InYourEyes]

Cymbalta is good for both pain and digestion where paxil only acts  on one neurotransmitter - serotonin . You can go ahead and order the IMMUNE26 , it is concentrated powder of egg . Doctors don't believe in transfer factors and stuff . I was having the same doubts that somehow a duct is blocked up (the same duct which dumps pancreative juices into small intestine?) This sounds like a very real possibility to me . Hope you get healthy again . You have your whole life ahead of you , if you fight the battle and don't drop your weapons then there is at least a chance that you will win !

[Mshorty880]

i'm going to a new gi doctor tomorrow I'll let you all know how it goes! I checked and i DID have my thyroid checked out it was fine. Thanks again everyone!

[Mshorty880]

My doctor doesnt want to do an ercp to test for sod but doesnt think i have it. She ran many many many blood tests and wants me to see an endocrinologist and a cardiologist. She thinks I might have pots, cyclic vomiting syndrome, and diabetes insipidus. Does anyone have those or know a lot about them?

The thing about cyclic vomitting syndrome is that its kind of episodic, like an on and off thing, but what I have is chronic and doesn't get significantly better or worse.

Diabetes insipidus actually makes sense because I drink water constantly and I'm always thirsty. Anyone had experience with this?

[Matthew007]

I've never heard about those.. but i'm glad your doctor is looking for options.  Be glad you're not doing an ERCP, there's a high risk for gettings messed up long term or for life on that test.  Usually they want evidence (elevated liver tests, positive MRCP ect ect)  Doctors hate doing it and sometimes refuse it so you were probably bummed that the doctor didn't want to test but it's good to rule out every possible thing before hand...

Hopefully your GI is on the right path.. :) that would explain your blood sugar levels being wacky.  Keep us updated :)

[Dave2436]

A couple of thoughts.... First I would be hesitant to take so many prescription medications with all of their side effects. While I am not a user, I think I would rather use medicinal marijuana to alleviate the symptoms of anxiety, nausea and pain. Those sound like the main ones and this would all be accomplished without side effects. Also, I have been suffering for years with bloating, mild nausea, and occasional bouts of diarrhea. I have a small polyp in my gallbladder but my GI doc said that too many people have their gall bladders removed only to find out that their symptoms are still there. He ordered a hydrogen breath test which revealed that I had small bowel bacterial overgrowth. An oral antibiotic cleared that up for about six months but the symptoms returned. I started taking Align probiotic and the symptoms seem to have lessened. One thing I have noticed though, is that when I have these episodes of bloating, which lasts for a week or two, my stool is usually a tan color, which I have read indicates that not enough bile has broken down the fats. Perhaps in my case the polyp is blocking the gall bladder duct and the flow of bile.  

[Mshorty880]

Weirdly, when I smoke it usually makes my headaches and nausea worse. I asked my doctor about a blockage in my bile duct but my xray didnt show anything and she said my symptoms weren't indicative of one.

I'm being admitted to an inpatient pain program in the hospital this monday..hopefully theyll figure more out while im there!

[Dave2436]

I've never heard of an x-ray being used to diagnose any sort of gall bladder issue. It is usually done with ultrasound at first. My wife had her gall bladder out a few years ago and she had been admitted with severe pain, nausea and vomiting on three previous occasions. The doctors at a large teaching hospital in Chicago all told her that her gall bladder was fine and kept discharging her. I happened to know of a surgeon who I contacted and he agreed to see her before she was discharged yet again. As soon as he read her chart and examined her he said she was "percolating a bad gall bladder" and scheduled surgery for the next day. She has been symptom free ever since. He also found that her bile ducts were filled with "microlithiasis" or tiny crystals resembling sand. These crystals were not visible through any imaging techniques but this was her problem.

[Mshorty880]

I just saw my gi specialist and she doesnt think I have microlithiasis. All she said is that I have post cholysystectomy syndrome, which basically is a label for pain in the gall bladder area after it is removed. There isnt a cure or treatment for this, she wasnt able to suggest any pain medicines or helpful remedies. Does anybody else suffer from pcs? Has anyone found relief from this stabbing pain?

[ShelbertMcgee]

My sister has the same thing...some people say its anxiety. shes tries some of the drugs you mentioned but no help she use to have night terrors....you should ask ouir parents if you ever did. we think that has something to do with it. alot of little children get night terrors. then she just go sick all the time with a real weak stomach and when she sleep she pukes. shes always sick. she either doesnt sleep or sleeps to much.
shes on anxiety med which help her behaviors. but shes still get real sick. she even got kicked out of school because of her sickness. and no one can seem to tell us whats wrong with her. i wish this was helpfull just know your not alone. my sister seems to get really sad over this...she has gained alot of weight since because her sickness makes her not want to leave her house.