Life long GI problems with no answers

[littlebirdsmile]

Okay, so i am a young female who has a pretty long history of stomach issues with no primary cause. I will list:

14 years old to 17 years old: Bad cramping due to gas and loose, painful BM. Doctor's told me it was IBS and put me on Lexapro (then Prozac). Had weight loss and vitamin def. Constantly changing BM.

17-22: Gas stuck around (pain wasn't so bad). Was still having loose BM and started getting Acid Reflux symptoms...burning, my stomach felt "slushy", I would really only have symptoms at night. I started going to a ND and she said that I had antibodies for gluten. I started the celiac diet and there was some improvement. I still have gas (malodorous), now I am having pebble like BM for the past three months(had a bad case of constipation that lasted a couple of days. Ended up having to give enema) -stools are light in color, float, and usually are malodorous, and "acid reflux" symptoms are still around. I always figured that if I eat smaller meals and eat slower that my stomach might feel better. I notice that if I eat smaller meals it feels like my stomach is full of acid. That I haven't eaten enough and there is a lot of left over acid with nothing to do.

Also, some side body issues I have had for the same amount of time:
fatigue
mild headaches
body aches
stuffy nose
sharp pain in upper right chest that goes back into right shoulder (gallbladder?)
increased heart rate for no reason (have had three attacks of this in 1 1/2 months - last only 10 min)
bladder pressure issues
OBGYN issues -recurrent
increased appetite (I can eat a lot -always craving different things)
recently I have been having a terrible craving for sugar - almost unstoppable craving for sugar

My ideas, maybe it is...
gallbladder
dumping syndrome
celiacs
ibs
something scary that I don't want to say outloud

I would really love some input. This has been going on for years with no results. I am a young adult and my body feels as though it is falling apart. Help!

[srodgers13]

This has happened to me all of my life, I have been on Elavil for 20 + years and still have issues. I do wonder if HSP is the connection. My anxiety comes on for no apparent reason...maybe picking up other's anxiety?? Please let me know if you can tell if yours is also from outside sources.

[lilacs4lucy]

I know it's been a long while, but here's the scoop...

I have definitely been improving since I last wrote.  I am feeling about 90% better than pre-surgery.  I have been able to eat most anything (mostly non-greasy of course) that I want.  I've eaten lots of Taco Bell.  I've been to A&W; I had ckn fingers and fries and that worked.  I can eat anything at Subway (at least so far - I haven't tried everything on the menu, ha).  I've been to Applebees, The Outback, The Texas Roadhouse (actually, this was the first restaurant I ate at - it was over Mother's Day weekend, and I ordered a grilled ckn breast with bbq on the side, mashed potatoes without butter, but of course they still make them with butter, and steamed broccoli; oh and I skipped the peanuts - only b/c the doc wanted me to avoid peanut butter at that time).

I have only been "deathly" sick twice since surgery...both of which I should have known I had coming.  The first was fairly early after I was able to eat solids.  I had too much spaghetti and the non-portion control is what did me in.  I had just ate too too much.  I keeled over in pain and pretty much all of it came back up.  Then more recently, I tried going out for dinner at this non-brand name restaurant...I ordered chicken strips and onion rings, just to see how I would do (cause it's the first "real" greasy thing - which was just last week) and unfortunately there were no warning signs (ie: pain).  I just woke up at around 2:45 am and knew I was going to be horribly sick.  And I mean really really sick.  It was weird too because I had been playing volleyball pretty much 1/2 hour after we ate which was around 7pm until 11:30pm.  I would've thought I'd have no issues considering I didn't even feel anything un-normal until I woke up, but boy was I wrong.

Anyways, point is, I feel pretty normal considering how I was feeling pre-surgery.  I have to go in for a c-dyph (spelling?) sample b/c the only thing that's not "normal" yet are the stools I've been having, which the doctor says is quite normal considering all the anti-biotics and what not, plus with pancreatitis you don't always have enough pancreatic enzymes being produced, which is what typically causes loose stools.  Nothing to be worried about, they are just going to test the sample to make sure there's not an infection and if not, then they'll start me on the enzymes so that my body can get even more back to normal.

I hope all went well with your surgery and I hope to hear back from you sooner than later.  Best of luck to you while you're recooperating.

[chrissy1212]

yea, i forgot to ask about that. my hida scan showed that my gallbladder was working really slow and only ejected 12% of the bile. He never did mention the sphinctor oddi, I'll try to give him a call today and find out. I asked him if my gall bladder could've beent his weak my whole life and he said yes that is possible. of course they never want to give definite answers for anything! he was really nice that, he went through everything, things that could go wrong and stuff. and he didn't say i would def. be better. I was like thats okay it's worth a shot...! haha Do you feel different? Like "normal"??? Thats how I picture me feeling. oddly normal...hehe

[lilacs4lucy]

I'm glad to hear that they found at least something out about your gallbladder.  I hope all goes well with your surgery.  Please keep me posted.  I know it's been a while since I last wrote on here, but that's b/c I went back to work.  I'm already feeling a lot better and I'm hoping that you will be very soon as well.  Also, before your surgery, have you asked your doctors how they know that it's your gall bladder for absolute sure vs. your sphyncter of oddi muscle (how do they know if it is or is not dysfunctioning)?  I'm curious to know how your doctors know which one is giving you the trouble because maybe it's both.  Aren't you a tad bit curious?  Because, if it's both, wouldn't you rather know before your surgery so you can have both surgeries done at once?  I hope all goes well for you.  Take'r easy.

[chrissy1212]

I'm getting my gallbladder out next thursday! I'm so excited! I know it's possible it won't solve evrything but I'm willing to try! any suggestions about post op?

[littlebirdsmile]

Help! I have had constipation issues for the past two weeks. I take fiber supplements everyday, eat lots of fruits/veggies, and exercise. Any ideas?

aye aye aye.

[littlebirdsmile]

Hey! Man oh man. Doctors need to start realizing that anyone can have issues with any organ at anytime in their lives!

I would say ask for: CT of galbladder and hyda scan and have them  check your liver enzymes.

I have been keeping a medical journal for the past couple of months. It is really helpful. It is a pain in the butt to remember sometimes but if you can put down what you ate, how you felt, and I usually add all symptoms from fatigue, runny nose, BM, ect. Then bring it with you to the doctor...you will find out a lot!

Good luck! Tell me how it goes!

[ewyglend]

I am a 26 yr old female with much of the same chronic symptoms you all have described, and the same frustration with countless doc apts/ER visits that lead nowhere! The last ER visit I was actually excited because I thought for sure something serious was going on and that they finally might remove what has been causing me years and years of pain and discomfort. They sent me home with cramping/pain meds. My mom had the same symptoms most of her life and then her gallbladder went nuts a few years ago and she had emergency surgery to remove it and says she's never felt better. Of course my doc said the same thing "it is very unlikely for someone of your age and health."

So, I have another doc appointment next week and I would like to know what I should ask about specifically. Any types of tests that I should ask for?

[chrissy1212]

i had a colonoscopy seven years ago, and they didn't find anything! the only thing that hurt was the horrible gas pains the whole day after i had it done. I also couldn't stand drinking that gallon of "laxative" for a whole day, it didn't even work on me! I would haev them give you a hyda scan so they can see how your gb is functioning, i had all kinds of gi tests and they never found anything!
And yes I hope they take it out and I feel aswesome! hehe it'll be weird getting used to "being normal" I'm sure you know the feeling. hope you find out soon! don't give up!

[littlebirdsmile]

I hope all goes well with the gen. surgeon! Wouldn't it be nice just to think...oh hey, it has been my gallbladder all these years, and then boom out it comes and in comes life? (Then also think, wow it has been my gallbladder and no one has realized it! grr) I think my gallbladder might be on the fritz too.

I just started going to a new doctor and they are sending me to a GI doctor. Lets see how that goes! My new doctor also thinks I have "midline fullness" with my thyroid. If that is so, that can account for some of my symptoms. I have been to so many doctors that I don't even know anymore. The best one I have been to though was my Naturopathic doctor. She is the one that found out I might have Celiacs. The only issue with that is I have been on the diet for 8 months and some of my stomach issues haven't gone away.  I feel like I have done everything in the book for GI problems! I am the only one in my 7 person family with chronic issues! Man, why bad genes, oh why!


I am too afraid to get a colonoscopy done though. I am hoping my GI doctor doesn't recommend that! I already have a lot of pain...I don't want more, but I also realize that I might just have to suck it up and get it done. Anyone had one?

Jamiealex: What were your symptoms? I am trying to figure out if it is my gallbladder. My mom had hers taken out and so did my grandfather. Plus my mom's side of the family has Diverticulitus (spelled wrong, sorry!). But every doctor has sent me home saying I am fine. I am able to get through the day but having a constant stomach ache isn't any fun!

[chrissy1212]

oh yea, the prozac, it works great for my depression, but has no effect on my gallbladder situation

[chrissy1212]

I got my results back today from the hyda scan, my gallbladder is only working at 12% so I have an appt with the gen. surgeon on march 31st to see if he wants to take it out. I'm still feeling crappy but it's only a week, hopefully he will take it out soon after :) Thanks for all the support!
my doctor didn't even seemed concerned, she said it doesn't show anything wrong with your gallbladder, but it's not empty as fast as it should.  I'll keep you informed on the meeting and stuff
Thanks!

[lilacs4lucy]

How's the prozac working?  Did you receive your results for the hyda scan yet?

Oh, and I loved that comment of yours about it being "rare" for people our age to have issues with their gallbladder, because when I went into the ER, the nurse said that she'd seen over 20+ cases of them within the last year.  She and her daughter, in fact, both have had theirs removed.  So, it's not rare, and it doesn't surprise me in the least bit.  And one other thing, the "stress" comment, you're absolutely right...it's just not so.  I specifically asked several doctors if this was a contributing factor, because I have a very stressful career, and they answered "NO."  Having gallbladder or similar issues was not brought on by stress.  And you're right on another issue as well, the "stress" per say, is more than likely brought on by all the doctors who can't seem to figure out what's wrong.

Anyways, hope you're having an alright day.  Talk to you soon.

[chrissy1212]

sorry I meant "littlebirdsmile" not Missy1962

[chrissy1212]

I am on prozac and i'm still having these problems. it is not just stress. unless you've dealt with it you don't know. it's people with your opinion that have caused us to have to deal with these problems our whole life..
I went to the ER last saturday and the doctor looked me right in the face and said "IT"S VERY RARE FOR SOMEONE YOUR AGE TO HAVE A GALLBLADDER PROBLEM"(and yes ruling out my gallbladder and just assuming it's just acid reflux) hmm funny how my grandmother was the same age when she had hers taken out, same with lilacsforlucy, jamiealex and missy1962! I don't know what it feels like to have a normal stomach! I've always told people I have a bad stomach but now I'm trying again to find out what it is. I got my HIDA today but won't hear anything until tomorrow. I'll keep you guys informed if I find anything out. I was ready to give up, thanks lilacsforlucy now I'll keep pushing the issue :)

[jamiealex1569]

HEY, I HAD THE SAME THING, WENT TO E.R. 8 TIMES IN 2 MONTHS AND THEY ALWAYS SAID NOTHING WAS WRON!!! THEN MY MOM, A REGISTERED NURSE WENT WITH ME AND DEMANDED A SPECIALIST COME DOWN, THEY RAN A NUCLEAR MEDICINE TEST AND FOUND OUT MY GALL BLADDER WAS LEAKING BILE INTO MY SYSTEM, AND HAD BEEN FOR A LONG TIME. THIS WONT SHOW UP ON NORMAL CAT SCANS OR ULTRASOUNDS!!! SINCE I DIDNT HAVE ANY GALL STONES, WAS SKINNY, AND ONLY 22 YRS OLD AT THE TIME THEY AUTOMATICALLY RULLED OUT MY GALLBLADDER!!!  THEY RAN THE NUCLEAR MED TEST AND 15 MINS. LATER WAS PREPPING ME FOR EMERGENCY SURGERY!!! WELL I GUESS THEY TOOK TO LONG AND RIGHT BEFORE THEY COULD GET ME DOWN TO SURGERY MY GALL BLADDER BLEW UP IN MY STOMACH!!! IT ALMOST KILLED ME!!! IF I WERE YOU I'D DEMAND TO HAVE A NUCLEAR MEDICINE TEST RAN!!!!  GOOD LUCK TO YA!!!! I WILL BE PRAYING FOR YOU        JAMIEALEX1569

[D222]

All seems to be stress and anxiety related...  IBS and most such things.... specifically if you are an HSP.   After you go through all the doctor visits and different symptoms analysis,fiber, diets, eleminating foods for allergies etc. etc.  It usually comes down to stress and anxiety and trying to keep that under control.  Prozac and other such meds seem to help most... along with a healthy diet- trying to find organic foods with no msg and other such chemicals.  The brain and the guts are so linked!  ... and if you are a sensitive person you are much more vulnerable.

[lilacs4lucy]

I hope all goes well with your hyda scan tomorrow.  You'll have to keep me posted, I'm curious to see what your doctor(s) tell you.  Hopefully, they'll finally be able to give you the answers you need.  And just remember, if something doesn't sound right, it's best to get a few opinions first before jumping the gun (if possible).

By the way, I'm 27 also.  Who would've thought stuff like this could happen to people our age?  Ya know.  I never would have thought any of this would happen to me.  Oh, and I meant to mention that after I was in the ER that Saturday, I had a chance to talk to my maternal grandmother, only to find out that she had had her gallbladder removed.  So of course, after our conversation, that's what I thought was wrong with me.  But that was until I got the hyda scan done and it proved otherwise.  It's funny, looking back on things now.  I didn't even know what the sphyncter of oddi was until a couple of months ago, and now I don't even have one.  Ha.  At least I can finally laugh about it.  Just keep this in mind, in case they tell you that your gallbladder is "just fine."  Keep with your instincts until someone figures out what's wrong.  It is the only way to start feeling better.

Anyway, I'm glad this helped.  Best of luck tomorrow.

[chrissy1212]

thanks that really helped! Someone I know recently was told she needed to get her gbladder out after years of pain and suffering... thats when I thought about it and looked up my symptoms on the internet. I got this overwhelming feeling of happiness, I felt like I finally found something that would make me feel normal! but I'm so tired of getting tests done that show nothing, I have my hida tomorrow so we'll see where that goes. I can't believe the er doctor gave me antacids. when I'm having an attack that makes it worse! and I told him that! Hang in there you'll feel great soon :)

[lilacs4lucy]

After reading your blog, I never thought that someone else could feel the same way I did and yet, you do.  I experienced almost all of the same symptoms, I went to the ER on 1/24/09 due to abdominal cramping and nausea.  They did a CT Scan and an Ultrasound, and found nothing.  My liver enzymes were high though, which was not normal.  They suspected something was wrong with my gallbadder, but did nothing more than send me home with some abdominal cramping medicine.  I had the Hyda Scan on 1/27/09 and while the first part went fine, because my gallbadder was fine, the second part did not go so great.  It wasn't horrible, but I did experience all of the same pain and nausea.  They put a few cold washcloths on my forehead while I was experiencing the symptoms, and that helped.  It only took 6 minutes into the 2nd part of the exam before I felt the symptoms, and they didn't last long, because the 2nd part of the exam is only about 30 minutes or so.  I then went to see a general surgeon on 1/28/09 and he told me that although my gallbladder was functioning properly, the sphycter of oddi may not be.  They can perform tests to see if this muscle is working properly, but I couldn't wait that long (it sometimes takes months to get into seeing someone).  Shortly after my meeting with the general surgeon, I went home to think about my options, and it didn't take long for me to decide that I wasn't about to waste any more time.  I went back to the hospital and had him perform a sphyncterotomy (ERCP) which is an out-patient procedure.  The risks of complications are low.  Unfortunately, for me, I did have a complication which was pancreatitis.  (There's a 16% chance you can get it).  And I unfortunately have a very severe case of it (There's only a 1% chance that it will be severe, most cases of pancreatitis last 3-4 days).  I was in the hospital from 1/28/09 to 2/20/09.  Then I started using home care (with 3 iv antibiotics and a nutrition bag which runs for 14 hours).  I just recently got great news that I can now take oral antibiotics, and am hoping to be back to work in a few weeks.  I'm sure you're thinking, omg, I don't want to go through all of that, but I wouldn't have it any other way.  I still can't quite eat normal, because I can't have dairy, most meat, and fat, but I know that once my pancreas heals completely, I am going to feel great.  And that is the best part about going through all of this.  I won't have to feel all the things I have been feeling for quite a few years, but see I didn't realize that that's what was wrong until that latest attack.  And sooner than later, I will actually feel like I can live a normal life finally.  Best of luck to you.

[missy1962]

Have you or chrissy1212 tried asking the experts on this site or any other site? What about using the symptom checker on WebMD? There has to be a plausible explanation for these symptoms. Have you seen a GI doc and had a EGD and/or colonoscopy? I sure hope you two can stay in touch and help each other figure this out. My heart goes out to you.

[chrissy1212]

I have had the same problems!!! I'm 27. I've had gas/bloating problems my whole life, I even stopped drinking soda completley at age 10! My symptoms acutally went away for about a year or two and now all of sudden I'm getting them back, more frequent nights where the pain is so horrible I just want to die, I even thought I was pregnant 3 wks ago got every test done and went to the gyn...I had an ultra sound done on my gallbladder and that came back good..so now i have to get my gallbladder checked witht he hida scan (where they put dye through your veins and take pictures of your gallbladder for 2 hrs. I went to the ER yesterday because I was bloated all weekend with stomach pains/nausuea/headaches/fatigue/pains/low fever they sent me home with antacids!!!!!!! they didnt' listen to a word I said. If someone gets back with you could you let me know?  I like not knowing i'm not crazy :)