Let me start by saying this is not IBS. In Jan. 2010 I flew to FL and my ears didn't pop. As a result pressure built up and I got a sinus infection that lasted almost 3 months. I had never had any sinus problems before (No allergies or sinus infections) A month into this I started getting at least 2 nosebleeds a day varying in severity. I was on 5 different antibiotics. Less than a week finishing the last round, I got a UTI (which I get at least once a year) that started to spread to my right kidney. Another antibiotic. Less than a month after that, I got a stomach bug or food poisoning and have been out ever since. This year has been hellacious. I am nauseous all the time. My BMs are orange/yellow diarrhea most of the time. I have random pain on both sides of rib cage and lower back into buttocks, had severe bouts of acid reflux, yellow on back of tongue, swollen pale/white tongue. At its worst I can't eat or drink the nausea is so bad, indigestion, I get chills for hours at a time but with no fever that I can tell, and bad headaches. None of these symptoms are relieved by bowel movements and I don't get cramping. They have diagnosed stomach virus and mesenteric lymphadenitis almost 3 months ago; both of which should “go away within a week on their own”… 2 and a half months ago. I have been put on 2 other antibiotics. I have had a colonoscopy, endoscope, small bowel follow through, tested negative for Chrons, colitis, H Pyl., Salmonella, Shigella, Chamylobacter, Staphylococcus, Giardia, Cryptospor, C diff., Random blood tests looking for specific things. I'm not gluten intolerant, diabetic, or a hypochondriac. I have never been allergic to anything be it medicine, food or otherwise. No blood pressure problems, never a broken bone and the only surgery I’ve had was to remove wisdom teeth and an ingrown nail. I have been on probiotics for 2 months in hopes it was just my gut flora imbalanced. I will have a few days where I start feeling better and then with no common trigger I’ll get turned again. Days of relentless nausea, weak, light orange/yellow diarrhea. I’m trying to stay positive but am losing myself slowly to whatever this is. I really don't like going to the doctors, missing work and driving myself financially into the ground via all these tests. I want my life back but I feel like I'm going to be dumped into the "We don't know what’s wrong - it’s IBS." category. I don't know if the sinus issue is relevant but at this point, it can't hurt to look at a bigger picture. I’m not getting better. Please for the love of God, help me.
OH my goodness! I feel so bad for you. It doesnt sound to me like IBS but what caught my attention on this post was it sounded exactly what my 30 year old nephew just went through. They never did find a diagnosis, sent all his test to the number one dr. in Ohio and he lives in California. He was put on Prednisone, his bowels they said look like a battlefield. But they ruled out all things including life threatening and cancers. It took 3 months for improvement on the prednisone and now he is all better.
Have you tried a differ dr?
I'll chime in with Jen on the gallbladder issue, only with a twist. When you get orange/yellow stool, it can mean not enough bile is getting into the digestive tract. If you don't get enuff digestive enzymes in your intestines, it makes it real hard for waste to break down. Bile production can be interfered with by a blockage in one of the ducts, like from the liver, gallbladder, and pancreas. Now, you said you had an endoscope and small bowel follow-thru, so that should have picked up on that sort of situation. But you could ask for a scan, as Jen also suggested, or even a simple ultrasound, to see what in the world is going on in your abdomen in general. Also, if you want to really get in deep, you can get a referral to a larger hospital in a university setting, those docs are the top guys, and have your records forwarded to them for a complete new workup.
By the way, I think you had a ruptured eardrum, which usually heals on its own, but it can cause the nosebleeds you had. So, in an abundance of caution, you could visit an ear nose throat ENT doc, to make sure that situation is resolved now. I don't see an ear/ sinus thing connected to your gastro problems, tho, but you could ask him to make sure.
Jennerfennerbenner makes an excellent point about the gallbladder and I would definitely have that checked if they haven't done that already. Then if you have a gallbladder scan and it comes back OK, I would ask for them to repeat the C.Diff. test and make sure they check for toxin A and toxin B if they can (in addition to the presence of bacteria alone.) The thing is--If they did a rapid C.Diff. test, the chances of having a false negative result are pretty high. In other words, you could have C.Diff. but the test results say you don't.
The other thing I learned recently is that the "bowel evac" preparation for the colonoscopy test, since it throws off the balance of good bacteria in the system, is actually considered to be a risk factor for getting C.Diff. So depending on when you tested negative for C.Diff. and when you had the colonoscopy, I guess it's possible you have C.Diff.
My Mom's stools with C.Diff. were pasty/yellow and then got very green as she got more ill. Mine when I had C.Diff. were pasty yellow and sometimes a little on the light orange side.
Thank you guys so much for your concern. I feel like I'm falling apart. I really do. I'm only 24 years old; I was eating right, exercising and planning a future with my husband. I can't wrap my head around what’s happened to me. I did have the HIDA scan and it came back borderline (30%). But I have no pain and the symptoms aren't triggered by anything I eat or don't eat.I have no gallstones and no inflammation. My Dr. wants to look at my liver function (got the blood drawn for that but no results yet) and tested for Addison’s disease. I go for a gastric emptying on Tuesday. The past week I have had nothing but water-like BMs. I am seeing my women’s clinic now to rule out ovarian cyst problems (developed after Mirena - now removed) and they found a bacterial overgrowth (not yeast) which I have a cream for now (I am OCD whan it comes to cleanliness and have never even had a yeast infection so I hate to put something like that out here but I am desperate). On top of everything else - for the past month and a half I've felt like I've been getting a UTI because every couple of days or every other day I will alternate between really dark yellow urine and sometimes even in the same day it'll switch to almost clear right back to really dark and there is a slight burning. Here is the catch though - I get UTIs at least once a year and know what they feel like and it never gets to that point of truly painful urination and constant urge to go. But just for a piece a mind I took an Azo home test and sure enough I have white blood cells in my urine but again - the symptoms never fully develop into a UTI that I can recognize. I just want to curl on my bed and turn off the switch. Melodramatic I know but a characature of my emotions none the less.
I have been tested for C.diff but I will ask to be tested for that again. I no longer have the sinus infection (that cleared up early-mid April) followed a week later by a UTI that I went to my right kidney fairly easily. And I have been taking probiotics in hopes my gut flora was seriously out of balance but nothing has made a difference. I have had an abdominal ultrasound in which everything looked good in size but I have a small cholesteral polyp on my gallbladder, a cyst in my right kidney and they couldn't see my pancreas due to "overlying bowl gas". But my doctor wrote "normal" on the test results and I have to trust him as much as I can. One of the most frustrating symptoms that seem to be getting ignored or written of as acid reflux (which I have NEVER had in my life - not even indigestion) is the yellow/orange coating on the back/mid of my tongue! No matter what I eat - it correlates with a nawing feeling in my chest indicative to acid reflux but medicine doesn't get rid of it. *sighs shaking head* I am truly at the end of my rope. I have tied a big ol' knot and am hanging on for dear sanity's sake but am fast approaching the point of a free fall into God only knows where. I have always been a very driven person and have comforted myself in that with God's help and steady outlook, I can get through the tough times in my life. As long as I know how to go about it. I don't care anymore 'what' this is, just find out and tell me how to manage it or avoid it and I can do it. This is so out of character for me to spill my heart out onto an online anything ... and I thank you all so much for your support and care. It truly touches me. Please keep in contact - I'll keep you all updated. *hugs*
Oh, if I were 24 again and had all this sickness like you, I'd be freaking out, too. But hang in, the docs will eventually come up with a diagnosis, and they will make you well. I want to go over a few things that you have mentioned in your latest post that point to the bile idea I had told you about before. I also have some tips to deal with being a sick person. Sorry this will be long, but you got a lot of different things going on.
The dark urine you're having, that is also a sign of bile duct blockage, which a urine or blood test will show if your billirubin count is too high, get retested if you have to. The yellow-orange coating on your tongue that has been ignored by docs, that is also a rare sign of bile blockage going on, as well as a sign of infection and dehyration, which you mention a variety of bacteria and infection in your body, past and present. The nausea you have is another sign of bile not getting through. I might also mention that since you have cysts on your kidney and gallbladder, could be that you have another one that is causing that bile backup, which a cyst is one of the causes of blockage in a duct.
The trip to Florida can actually be linked to all this IF you ate food, drink, or like a salad that was contaminated with a bacteria like E. Coli, which will cause Hepatitis A, again you'll get all your symptoms with that, so it will be very interesting to see what your liver function bloodwork shows. Hep A can show up after a few days, on up to a couple months, which the latter matches up with your timeline on all this, and it can last for six months as an estimate, but most people are vaccinated for Hep A as children.
I would suggest while the docs are mulling this over, that you eat low fat, but be sure to get your protein (eggs are easiest to digest), and include more fiber by way of oat cereal with sugar and Acidophilus milk, or a wheat sub sandwich or salad, plus good old chicken noodle soup goes down pretty good, and daily drink either a small glass of OJ or V8, and definitely keep up water intake to prevent dehydration. I hope you are done with all the antibiotics, mainly because some antibiotics can cause Hepatitis, and also if you are taking ANY other kind of drugs, have the prescribing doc review side effects becuz sometimes medicines can cause the exact kind of waste you have..
I also think you could ask your doctor to give you a short-term tranquilizer and a prescription-strength pain killer, to make this whole ordeal easier for you. I don't like the sound of your desperation, so I think you're entitled to some simple medications to cheer you somewhat, plus stress is very bad for the body. Keep in mind with pain killers, drink extra water to sidestep constipation, that's what I do, practically every time I'm in the bathroom, I guzzle some H2O. If they won't give them to you, ask the clerk in the natural food store for either teas or bottled pills of herbs that will calm you and kill pain.
And kid, just go ahead and declare yourself a sick personage, you are visiting the docs, you are getting tested, and so I think if you have run out of sick days at work, you could ask for an unpaid leave of absence for a few weeks, so you can just sit home and BE SICK, and by making those arrangements, you won't have it hanging over your head. To make some money in the meantime, you can sell stuff you have on EBAY, the whole thing is done through mail so you don't have to go anywhere. You can also make a very small amount of money by several on-line type jobs, look around and see can you find something.
But hon, when people get sick, they sometimes gotta ask for help, just like you have here, and this includes financial assistance like a loan from a close relative, to keep you guys going, maybe catch up some smaller debts while you're at it. Your husband could even get a second job, which I know he would be GLAD to do SOMETHING to help out, men cannot stand it when their loved one is suffering and they are helpless. Keep us posted, you are an interesting puzzle, and we all are cheering you on to get well.
Thank you ggreg for your input. I can't tell you how calming it is to read your advice. I will tell you though - I have practically no painwhat so ever. I truely don't believe this is my gallbladder... No matter what I eat. No pain. The nausea is the biggest and worst symptom in all of this. Before anything else - the nausea. They didn't see any blockage that I know off in terms of bile ducts and the like...all I can say is that while I know I can't give up..... I am so tired ggreg...so tired.... I am desperate and I hope it is obvious because that is one of the only real emotions I feel now-a-days. Desperation, anger/bitterness, hopeful, crushed and loved. I have to keep myself firm in that I know something isn't right. Like my mom said - "If you don't others to give up on you, you can't give up on yourself." Some days are harder than others. I wish they could just admit me to the hospital and keep me there so they could run the tests they need to run closer together....anyways.... it hasn't been a good night and I just want to sleep. Thank you again...really..thank you..
Oh, Scarlet, what have they done to you!
Bile obstruction doesn't cause pain. Perhaps you are thinking of gallstones which are made in the gallbladder, they can hurt if they're big enough. No, bile comes out of the liver, too, just like the gallbladder. Your gallbladder test was borderline at 30 percent, so I more or less crossed that off. But bile comes out of the liver, too, which is one reason I was interested to hear what those results might be. There are several "veins" of little bile ducts that come together inside the liver and empty out into the "common bile duct." That duct is where the liver excretes its bile, is where the gallbladder empties its bile, and the pancreas releases its various fluids. If a blockage, usually from a cyst, gets into the common bile duct, OR anywhere in the liver (perhaps caused by temporary hepatitis), then not enough bile will flow down into the small intestine via the common bile duct, and you get that orangey waste product, orangey tongue, and your nausea symptoms, etc. Bile also breaks down waste, so when that's not doing its job, you'll wind up with draining digestion, just pulls the life right out of a person.
Oh, you're one sick puppy, to be sure, whatever the problem is, and you know something, I have thought the exact same thing about myself as you on the hospital thing. One time I had diarrhea a half-dozen times daily for six months, I could barely walk, I was just SO sick. And do you know it took FOREVER to see this specialist, and that one, and this test, and that one, and NOBODY figured me out. It was ME who done it, I did some research, read some books and articles, and finally realized a medication change had tore up my intestines, so as soon as I got off it, BINGO, I was well. Of course, to this day, some things I simply cannot eat. But anyhow, to me, your symptoms seem so obvious, that I cannot understand how come it's taking them so dang long to get you straight. It's not fair!
I think that liver thing ought to tell the tale. Just rest up, hon, be sickly now, roll up in those covers and cry. It's okay. And just hold onto this thought: If you feel sick enough like you might pass out, why, check into the ER YOURSELF or call the ambulance. And if you have to, just push out some of that orangey waste on the hospital gurney, that'll get them to check you in! Ha!
I'm trying to do the same thing in looking for a diagnoses but I don't want to play the 'Cinderella Game' where "if the shoe fits" syndrome and perpetuate the desperate nature in which the doctors already view me. I truly am trying to be as relative and reasonable about this as I can. The last thing I want is for my doctors to think I spend every waking hour picking through the internet looking for hints and clues.... however true that may be some days.... I don't want them to write me off as a hypochondriac. I thank you again from the bottom of my heart truly, for your communication with me. Its a lonely road indeed. My husband is a wonderful man but he works full time and goes to school full time and our hours never match up so I very rarely get to see him. My mother has been a blessing but she is so upset by all of this as well, I can't talk with her about this because she gets frustrated and refuses to discuss possible outcomes She just shakes her head and says she doesn't know. And while I feel the same way I need support somewhere in the fight to not give up. I know with every malfunctioning cell in my body that something isn't right. You don't go from healthy, eating -in reality- a bit too much ( I had some extra to loose which is why no one is overly concerned about the 30+ pounds I've lost thats put me into my weight bracket) I have stopped taking the prilosec because my tongue was still getting that yellow/orange coating and there was still a slight burning in my throat, but not bad. Either way - I don't think I should take it right now as all it may do is mask a crucial symptom. I find it so ironic that prior to the initial illness in May (vomitting once) I have never experienced any form of indigestion or acid reflux. I went from being fine as best to my knowledge, to this in less than a week if that. As far as a bile blockage somewhere, I'm interested in finding out my results but of course this is a holiday weekend and I have a 6 days work stretch through it - and yesterday was an aweful day for me nausea wise. I am awaiting the results from the liver function, the gastric emptying and the Addisons disease bloodwork. I went to a Patient first about the positive home UTI results and the doctor gave me a round of Bactrim. I asked him "So I do have a UTI?" he told me that my urine looked good but they treat pre-emptively and if a patient presents with symptoms they treat it.... I'm not taking the antibiotics. I 100% believe antibiotics are what did this to me to begin with - I have taken almost 10 rounds of antibiotics since Janurary and have had it! I suffered constant headaches throughout the sinus issues and those continued after the infection cleared up and I was popping 800miligrams ibprophen almost daily. Those havn't been as bad in the last few months however in the last few weeks I have been getting these localized sharp shooting pains in my head that come on from out of no where and leave just as fast... and while the term "pulling my hair out" typically refers to stress, I have noticed my hair (long, red, thick curly : ( hair) coming out more and more in the shower, when I brush, on my clothes throughout the day.. Bah *sighs* This is truly insane. Almost laughable in its emcompassing idiocy that I should be in my 'hay-days' of life. How could someone take such a downward spiral in only a few months and no one knows why?
But just to clearify the main symptoms from the catholicity of bodily changes listed in my posts..... nausea, yellow/orange tongue coating, alternating between pale more formed BMs to yellowish diarhhea/water BMs that can altogether seem semi normal for a day or two right back to either of the previous, discomfort in my upper left stomach area and mid back between my hip area and rib cage but closer to hip, the inability to yawn all the way (they start but I just can't seem to get that full breath 95% of the time), bubbly sounding stomach, constant ear crackling and oh yeah - the nausea.
I am demading to be seen by my doctor this coming week to discuss where we go from here. This is NOT IBS or stress induced. I am NOT so depressed as to cause my symptoms, my symptoms are making me depressed. Thank you for reading. And again - as soon as I hear any results - I'll post.
Interesting your liver tests were okay (except the elevated CRP, which is produced in the liver and can indicate a bacterial infection). I tell you what, next time you see the doc, ask him what your bilirubin results were (they should have done that test). Then ask him why your urine is so dark, and your yellow diarrhea stinks so much, and you have this endless nausea and lost 30 pounds. I'm with you, I don't see how a person can go from fine to zero in a matter of days, really. And I DON'T like it that they threw all those antibiotics at you, which can be one reason why your hair is falling out. I don't know what's wrong with you either, other than the few things I mentioned and some of the other posters mentioned.
Gosh, I feel for you. You could try taking an ordinary alka seltzer when your tummy gets uggy. See can you find some liquid children's vitamins at the drugstore, to keep up your nutrients, and keep that water going down. Just eat your favorite items, maybe that'll tempt you beyond your nausea. And keep in mind you might need a referral to a gastro specialist at a hospital in a university setting, perhaps.
As a side note - the BMs 'sink' not 'stink' : ) And the urine is only dark some of the time. It goes back and forth regardless of how much fluid I drink or don't drink. And the BMs aren't always yellowish either. They vary in color as well. I have stopped taking prilosec now for a week and the acid reflux seems to be a lot better (or I'm getting used to a degree of it). I still get the coating on my tongue though. I did the 'spit test' for candida and that only affirmed my saliva isn't normal either (which I could have told anyone who asked - but I don't believe it to be candida) *shakes head* You know, I was a competative gymnast for over 9 years. Hard core training and strick al-be-it healthy diets and felt great!! I never knew a childhood with long term sickness and maybe thats why I feel so helpless now. But even when I had colds, UTI's and mono I 'felt' strong. I don't with this... There are symtpoms I have had for years that I have written off as normal for me but may have been an indicator of something else. I wrote off flaky dry skin as the house being cold and not lotioning myself all the time. Dry hair as genetics. Weight gain steadily despite excerise and healthy eating to multible forms of birth control. The past half a year or so I will go from fine to raging hungry - I ruled that as my hypoglycemia. Constant infections as being a bit sickly? Thats a stretch because aside from those infections I have never had a broken bone, no allergies, nothing. Anyways. I'm going to go eat some toast. Thank you again for keeping in contact. I check everyday and it makes me feel better seeing a post - it makes me feel like I'm not alone in this.
I'm still feeling ill. Some good days. Thank God for anti-nausea meds. I spoke w/ a surgeon yesterday. One heck of a nice guy. He told me however that he couldn't give me any answers. He told me to have my gallbladder removed was a choice I had to make on my own. He said I wasn't sitting on a time bomb but that if the symptoms were effecting my day to day life - we should remove it. I realize just how attractive I must sound from the previous post.. *palms face* Anyways. It's a double edged sword for me I think. On one side - when I'm feeling so sick to my stomch and chills.. I would go to the hospital right now if I thought for a moment there was a chance to end this horrible quality of life. But when I'm feeling better - I think to myself... there has got to be a better way. The main symptom is nausea and it is still dragging me down.... My gallbladder may be coming out and I'm terrified of the after effects.... I am so scared of getting worse.
You can do some reading online about how folks do after their gallbladder is removed, but I think they do rather well. And since it initially came up as 30 percent effective, and since bile comes out of there, that could explain your symptoms. Plus you have the added benefit of a surgeon who goes in there of being able to see the common bile duct and visualize your liver, too. But after surgery, you'll get another bunch of antibiotics... when you finish your final round of it, a tip you can try is, for two weeks either drinking Acidophilus milk or Activia yogurt to get the probiotics in you that restore normal flora to the intestines that antibiotics disturb. Talk to that surgeon again about the good, bad, and ugly of gallbladder removal, so you'll be prepared for it. My back needs an operation and I absolutely don't want to go there, and wonder if it will make things worse, too, so I know where you're coming from. But if the docs recommend it, I think I'd give it a go, in hopes that after you recover from the surgery and get adjusted to not having that gland, you will get to feeling worlds better. Gosh, I hope things work out for you. I'm sick too, and it drives me right up a wall, so frustrating.
I'm sorry to hear you may have to have surgery. I hope everything works out as it should whichever choice you make. I appreciate you keeping in touch. It is so nice to have an outside party to speak with about this. I am seriously considereing it but I am afraid, like I said, of getting worse. I understand and acknowledge that I can't know until I do have it removed, but the finality of it is daunting. My husband will stand behind me no matter what but my mom wants me to have it out if there is even the slightest chance it will make it better. I just have such odd gallbladder symptoms I think.... nausea is the main complaint, gas and bloating, digestive issues and headaches.... Anyways. I don't know if there is anything else to look for. I guess I am praying so hard they find its a parasite - I take a couple pills and will get better... har har har...... Thank you again ggreg and keep me posted on how you are doing with your back. You're in my thoughts and prayers.
The chills mean you are sick, test your temp next time. you will probably see that you have a high temp. Go to a GI doctor and have him test for the chrons gene. My first attacks of chrons were chills. Then started losing weight. Loads of antibiotics. After loads of tests thanks to the GI doc finally had the test for the chrons gene. It did show that I had then gene. Finally started on Remicade and after a month or 2 finally got to where I could eat. Then I got an ut attack that wouldn't go away. After more tests it showed that I had a fistula. Had to have bowel resection (my chorns was in the small intestine. Have been in remission since then 7 of 2007. But the good thing is that I had the fistula which force the bowel resection. My small intestine close to the illium was just a ball of messed up intestine and they found a small cancer. I often think what would have happened if not for the fistula, because I was truly feeling better with the Remicade. The cancer would have been going strong by now. But instead I am cancer free and my chrons is in remission. Don't give up and best of luck
Unfortunetly I can't offer much help. I also got sick after a few rounds of antibioticts for an infected piercing (of all things). That was 2 years, one month and 2 days ago. though the days from then until now are all a blur since I lost my job and have since moved in with my boyfriends mother (Im now 27) Before that I was and active and healthy person, I bearly even got colds. Now I don't recconize myself. I'm just sick, anxious, and depressed. Not to mention scared because I don't know whats wrong and would give anything to have my "normal" life back. I don't really ever do the things I love doing anymore
Sounds like you got all the test I did though...,and you've tried probiotics. None of the antinausea meds i've been on have really helped, which is funny because Benadryl works the best for me. I've searched all over the internet, right now I'm wondering if i should by this ebook about having your body being infected by candida, and the simple things you can do to get rid... sounds like a bunch of BS, but you get desperate after awhile as I'm sure you know.
But I do feel mildly better now then when I first came down with ... what ever this is. Some days I can go out and do things... even spent a week at the beach this summer....but then everything will suddenly come crashing down with out reason and I'll be really sick again for days or months. So hopefully you won't always feel so bad. You sound like a much stronger person then I am, I will keep my fingers crossed for you. If you have any questions for me or if I can help in anyway please let me know.
Thank you all for your comments. I have decided to have the surgery to have my gallbladder out. While I have no pain, I get this fluttering right where my gallbladder is and other times its like there is a rock sitting by my stomach. I pray to God this is the problem but I have to take faith in that they have done a thorough workup on me to rule out anything else. Please pray. I will let you all know when the surgery is.
I am relieved the docs are going to take that gallbladder out. Let's hope this will make you feel better soon. Ask them to give you some written instructions on how to live without a gallbladder, altho it is not particularly problematic for most people. My grandmother had hers out when she was in her 30s, you would have never known. After the right amount of time goes by for you to heal up, and yet things do not improve, I think I'd ask those docs to refer you to a university hospital to an expert in gastro problems. I've already sent up a prayer for you, and I shall think of you during this trying time. And if the pain killers they give you after the operation aren't enough, don't be shy about complaining. When you finish up the last round of any antibiotics, get some probiotics in you, either from the health food store in a bottle or from the grocery store via Acidophilus milk or Activia yogurt for two weeks. All the best, child.
Thank you. I go today at 4:30 pm to speak with the surgeon again. The first time I wasn't convinced and felt I wasn't prepared to make the choice. But after a week or so I'm at the point where I need to look at this objectively. Fact: My gallbladder is not working like it should. Fact: I have been sick for far too long and everything else diagnostically has been negative/normal (save C reactive protein which very well could be the gallbladder). Fact: Despite being atypical - my symptoms fit. So I have to make that choice. And I pray to God with all that I am that I can move on with my life after this. If I get diarrhea or such, I can always take things to balance it out. There is nothing I can take to make my gallbladder better. *sighs* I am feeling very sick today and it helps in the decision making process.
Goldfishy222 - have you had a HIDA scan w/ CCK injection? Have you had you're thyroid checked. If the anti nausea meds don't help it may not be gastro related. I hope you are feeling better.
Well, I have surgery today at 3:00pm to have my gallbladder removed. Pray this is whats been afflicting me and that I recover quickly. I pray I am one of the lucky ones who can forget they don't have one.
Well - I'm still sick. I am more depressed than I was and no closer to an answer. I hate life right now and no, I am not sick because I am depressed. I am depressed because I am sick and have been for over 6 months..The main issue is still the nausea. I get chills with no fever, over-whelming fatigue and a yellow/orange coating on the back of my tongue despite taking good care of myself.... For the love of God... please please ask anyone...everyone...This is not right....and there has got to be an answer...
Gee whiz! I hope you will return to the doc who is watching over you and tell him you are still sick. You could go back thru all these replies here and jot down some of the ideas diff people have had about what might be making you sick. One person said Crohn's disease, I think, which is diff from gallbladder issues. And I think I made mention of a reason why you might get that strange color in your throat. You could bring that little list to him, tell him some people suggested those might be reasons you've been sick. Maybe bring someone with you, to keep the doc serious about all this, who can tell him how miserable you've been. Whatever has been doing this, I think must still be at work here. You have every right to be mad as heck about going thru removing your gallbladder and yet you still are quite sick. Maybe he can refer you to a new specialist. There is an Ask the Doctor section of MedHelp that you could try, in case THEY have better ideas than us. But of course you'll need to get back in to see your doc ASAP. I just hate this for you and barely know what to say. How sad and frustrating.
You are two months out from your gallbladder surgery and you still don't feel well. This is not good at all. I am wondering if you saw the doc as followup to your surgery and told him you still didn't feel good and if you told him your symptoms at that time, which I presume are still nausea, discolored diarrhea stool, strange color in your mouth, plus what was the explanation of your liver crp being so high, poss UTI, and so forth. If you are broke, you can STILL go see the doc who has been doing all these tests, and when comes time to pay, ask the office to send you a bill...they don't like to, but they will. OR if you are feeling near death's door, or have a temperature, or are perhaps dehydrated from continuing diarrhea, you can go to the ER and they will accept you whether you have insurance or money, or not.
If you decide to go to the ER, while they need to know you recently had gallbladder surgery, they also need to know your previous symptoms, which I just listed off, and also how your illness began after you came back from a trip to Florida. I'm thinking you have a liver infection, or the common bile duct blockage, SOMEthing is making you sick, and after you dealing with this for a year, going through surgery, and are even worse now, not better, wellllll, someone who knows their stuff ought to sit down with all you records and figure out what is going on. Could be you have a gut infection that is not the norm, settled in your liver perhaps, and I hesitate to say it but parasite is possible, and they'll have to do more than just the generic tests or more than just throw antibiotics at you.
I also think you should make an appointment with the doctor who actually did the gallbladder surgery so you can speak to him about what he saw in your gut when he opened you up (altho if you can reach him by phone, all the better), but he also OUGHT to know some of the atypical reasons why you're still sick and have been sick all along, I mean, he's a surgeon!
I just wish you could quit being passed around, and when gallbladder surgery didn't do the trick, they really should have ramped up their investigations. You could ask for a referral to one of the top guys in gastroenterology in your state who works at a university hospital. For your next doc appoints or going to the ER, someone in your family should go with you. Also, you shouldn't feel the least bit bad about asking for financial help from family, too, mainly to keep paying the mortgage, if you have one. Keep us posted, and I am SO worried about you.
I just read through all of the posts and I have a couple things to suggest. First, I believe that it is rare when someone just randomly develops many unrelated symptoms and they don't all have a common reason. It sounds like you should have some more blood testing done. Things like thyroid can cause many symptoms. Also you never mentioned what type of doctors you have seen. Have you only seen your general doctor (and the surgeon) or have you also seen doctors in different specialties?
One thing that is hard about getting sick is that you lose a lot of your motivation. After a while it can be hard to get up and go see another doctor or go get another test when nothing you have done so far has helped. Do you have insurance? If so, getting a couple more blood tests won't cost very much. Things like vitamins, minerals, and thyroid can cause many different problems. Please stay motivated, there is something out there that can help you, it just takes time to find it.
Thank you for writing on here. I have seen my PCP, a gastro Dr., and a surgeon. I am still fighting. My husband won't let me give up... but I would be undermineing the situation by saying that I didn't feel like curling up and disapearing into the folds of my bed that has turned into a variable habitat for the 'thing' I have become. I am no more depressed or anxious that what this situation bades me to be..but it is darker some days than I care to admit. I hear reason and understand the basic logic in the terms like "Get through one day at a time" and "Keep hope" and the ever present "They'll figure this out."... although these are becoming less and less a true motivational statement and more of a proverbial 'pat-on-the-back' from those around me. And while I know they no longer know what to say - a part of me feels guilty for making my family, friends and co-workers be in a position to say these things all the time. But every time someone asks how I'm doing, its a slap in the face for me. And in my line of work I get asked this a hundred times a day and while a generic 'Fine"..."Great.".. and "Fantastic." or some variation of faux enthusiasm is required; it has never been so hard for me to do it... I choke back sobs at the fact that I've had to do this for literally 7 months now. Being told that this is IBS scares the hell out of me. I know IBS from friends and family.. and this is NOT IBS. I have had my thyroid tested but I see an endocrinologist on Monday. My only hope is that she reviews patient files before accepting because she only takes those she feels she can help. And she wants to see me. So there has got to be hope right?... God.. this time of year was my favorite. I was an annoying ball of undiluted happiness. Christmas cheer abound! But this year... I honestly feel like I'm carrying around the dead carcass of the old me. Like some macabre puppet I have to string along infront of friends and family.... and the longer it stays .. the more it decays... becoming less and less believable. *sighs* I'm just so tired.. and it's easier for me to feel sad when I feel sick. Theres no longer that barrier of hope - it just gets to me that much faster.. Anyways.. thank you again for reading and I will keep you posted of any medical details... we HAVE to figure this out... I have no choice....
What you describe is common. It's hard going through an illness when you don't know what is going wrong. Also, it's common to feel anxious or depressed when you have to go through something like this. I am not by any means saying that depression or anxiety caused your problems. I think that your problems caused some depression or anxiety. I recommend that you ask for some medicine to help with this. This can usually be prescribed by your PCP and it will help. You will probably say that this won't fix any of your problems but there are many reasons to do this. Depression/anxiety causes physical symptoms and there is no way of knowing if some of your newer symptoms are caused by this. Also, it will help you keep your motivation up.
Here's a little bit of my story. Three years ago I got mono and then started developing a ton of symptoms. I got horrible stomach pain, nausea, dizzyness, shortness of breath, among other things. I had every test: blood tests, stool tests, urine tests, abdominal X-rays, abdominal, pelvic and chest CT scans, brain MRI, Smart-pill, colonoscopy, upper endoscopy, EGD and small bowel manometry, gastric emptying scan, upper GI small bowel followthrough, hydrogen breath test for small intestinal bacteria overgrowth, rectal manometry, HIDA scan of the small bowel, sitzmarker study, EKG's, stress echo, holters, and echo with bubble study. Most of those tests were normal. My point being that you have to push to get testing done to figure out what is wrong. My mom and I spent hours researching what it could be. Finally after about 2 1/2 years my mom and I found something on the internet that fit, we saw a doctor about it and she did a simple test proving what was causing all my symptoms. My life right now is my no means easy, I'm on about 30 pills a day and I feel pretty bad most of the time. But you need to keep on trying. Whatever it takes. If you need me to message you every week asking what you accomplished (ex. seeing a doctor, getting a test done, researching something on the internet) then we'll do that.
I am still maintaining. Blood work work addison's and thyroid came back inconclusive. I know the gallbladder needed to come out.. but I am still frustrated as to what is going on. I am taking this as it comes and am seriously considering a different gastro Dr. One that doesn't assume I'm "emotionally labile" - this is what the nurse wrote on my file when I started crying when after over 3 weeks when I first got sick she told me there was a nasty stomach bug going around.... Anyways. I still get the feelings of hopelessness now and then and don't go a single day without the nausea. Since the gallbladder removal I get constipated now and then but then - like this morning - it'll be very light brown,almost pale and thin. But no matter the look - all my BM's sink. So theres that..nausea and every morning sometimes lasting throughout the day.. a pale swollen/scalopped tongue... that gets an orangy coating once I start eating...but it isn't acid reflux that anybodys been able to say.Weakness, fatigue and chills with no fever.
I'm confused by what you mean when the blood work for thyroid came back inconclusive. Bowel movements sinking is actually normal, floating is what indicates a problem. Have you tried ginger for your nausea?
Yes, I've tried ginger for the nausea. And peppermint. In regards to the bloodwork - I used the wrong adjective. I wish it came back inconclusive - at least that would still be an oulet. The tests came back negative but she still wants to do an ultrasound of my neck because one thyroid glad is slightly larger than the other. If the bloodwork came back normal - I can't see paying the co-payment plus what the ultrasound will cost to have the ultrasound done.... We will see.
Well. I saw the endocrinologist again this week and she has ordered more blood work. As well as another 24 hour urine analysis. She did an ultrasound of the growth on my left thyroid gland and printed pictures...and scheduled another appointment. We will see what happens. Thank you all again for providing so much support. Fellinglike you're not alone is so vital.
Scarlet, would you be willing to try a gluten-free diet for a few weeks to see if that would help? I know you've been tested, but those tests can be very inaccurate - including the biopsy. You've talked about the fatigue and nausea you experience and yes, those could be caused by a variety of issues, but they're also very symptomatic of someone with gluten-issues. Many people with gluten issues end up self-diagnosing by using an elimination diet. Another way of trying to find out is by use of a kit provided by enterolab.com. It's the way my husband finally figured out what was slowly 'killing' him. He was healthy and extremely active for most of his life. But for about 5 years a fatigue set in that we couldn't explain. It would literally - toward the end - make him feel like if he didn't lie down, he'd fall down. He also developed a 'sometimes' rash that no one could figure out. He'd always had bowel habits that meant a bowel movement once every 3 days, but he considered that normal for him. And there were a variety of other small things.
Food intolerance issues are being found more and more often in people, and they can make a person totally miserable. And the problem is no one really seems to have 'standard' symptoms. I've worked with a gentlemen whose major symptom was he found he suddently couldn't breathe well at times. He went through cardiologists, pulmonologists - any speciality you can imagine. He turned out to have not only gluten issues, but to have problems with some other foods as well. He's doing a lot better, but if he gets a small 'hit,' he's down for the count.
I've got a couple new ideas, too. While I still think you may have a "common bile duct" blockage, or possibly an unusual bacteria or parasite going on from food in Florida, could be if you would ask your doc to order a CT scan of your abdomen, the radiologist report might pick up something that ultrasound and internal tests have not seen. A lot of times I hear about people poking and prodding and seeing this and that doc, and FINALLY someone gets the bright idea of a scan, and bingo, the very thing that is causing many symptoms is found.
I also wonder if you still are having your nosebleeds and headaches. If so, visiting an ear nose throat ENT would be a good idea, altho I don't imagine that is connected to your digestive issues. But the ENT could also have a look at that orange swollen mouth of yours and should perhaps understand what that means. Maybe a referral to an infectious disease specialist might yield some results, or I think your doc should draw blood again and check your white blood cell count, and really unusual intestinal tract bacteria and evidence of parasites that might be making you sick. Hang in.
I'm sorry all this is still going on! I know you are worn slam out.
Hey you guys. Thank you again so much for keeping in touch. I tried going gluton free for over 3 weeks and there was no improvement what-so-ever. But my mom was sure that was it when she first read into it. As far as a common bile duct issue - I don't have that kind of pain and I had no blockage to begin with. No stones - just sludge and parts of the gallbladder was starting to go bad. I don't know about a parasite or bacteria because my symptoms are so off from the typical if those were the case..The doctors have told me the likelyhod of a parasite by now is almost 0. I wish it was that easy though. God do I wish. My white blood cell count is something I have a few questions about. When my platelet count and red blood cell count are right on the boarder of the lowest number in the bracket, but the white blood cells are still registering in the middle of their bracket - does that mean that the ratio of white blood cells are elevated? I don't know. You'd think if that were the case the Dr.'s might see that though. I'm not having any more nosebleeds but I still get pretty bad headaches. On all of my blood work since May - my platelet count has been, in a bracket of 150-400, never above 160. It's been 136 to 157. Thats it. My MVP has registered above the norm every single time. (MVP stands for mass platelet volume which is actually the size of the platelets - the higher the number - the larger they are. The larger they are the newer they are. And if your platelet volume is continuously high your bone marrow is making lots of new platelets..) But seeing as how I am actually low in platelets.I have read that increased MPV and decresed platelet count indicates increased platelet destruction. But no idea why. My tongue still gets that orangy coating but my tongue is now almost always swollen and pale with scalloped marks from my teeth. This startled my mother. And I have these tiny red dots all over my skin that I have found to be petechia. No answers though. I am still very weak, fatigued and nauseous all the time. I am actually getting constipated now. This started after the gallbladder removal. But considering - it isn't the worst by far. I've been dealing with some level of constipation my whole life. Literally - since I was born. I have had a number of people talk to me about anxiety not helping - how I need to not be depressed.. but really... if I could be happy I would. A happy drug is not going to make this better. I'm thinking of seeing someone - but no drugs. I don't need to add any side effects or discredit symptoms because they think it'll help. Tell me what this is. You don't even need to tell me its curable - just how to manage it and I will be infinately happier! Knowing is over half of this battle... As always - the continuing symptoms - nausea, chills with no fever, reduced body temperature, intolerance to cold (within minutes in a car with gloves on my fingers get so cold I am in pain), swollen/scalloped tongue, and overwhelming fatigue and weakness. Other symptoms come and go but these are the most dire and pressing in severity and consistancy. Thank you all again. Please write back.
I'm not sure about your other symptoms but you need to try 100% gluten free diet for at least 2 months. This means no cheating at all or else you might not know if this is the problem. If you already ate some gluten after the 3 weeks then I would recommend starting over the 2 month time count.
Patient915. Trust me. I've had the blood work - intestinal biopsies and because I read even those tests can miss it - I went gluten free for as long as I could. Its wasn't even so much a matter that I didn't feel better - but that I was feeling worse. Even now - I can have a day where I feel slightly better eating the same stuff. Then with no dietary change - have the rug pulled out from underneath me. I am by no means ungrateful for the advice and continued support here - but I am 99% positive it isn't celiacs disease. And right now - feeling so sick all the time - very few things sit on my stomach well. Bread does just fine. But just as a side note - no matter whether its gluten or not - after I eat in the morning is when I start getting bad.. and it lasts throughout the whole day. I have tried not eating and I start feeling sick no matter - but it coinsides with eating in the morning/early afternoon as much as I can tell. Yet in the evenings eating can help my stomach. I want to be monitored so badly. Just hook me up - I don't care to what - and do whatever you need to do.
I understand that you've had the blood work and biopsies. I did too. I was told by a doctor who runs a celiac disease clinic that to be 100% sure that you don't have celiac disease you need to also try eliminating all gluten for at least 2 months. If you don't want to try it for 2 months then no one is forcing you to. Also it is not necessarily celiac disease, it could be a gluten intolerance that is not celiac disease. This type of problem is confusing and there is always something else to try. You need to decide what to try next whether it is eliminating foods or something else. In my opinion, sitting still and waiting for time to help things is one of the worse things to do. What is hard to do is to decide what to try. Everyone is always telling you to try this supplement it will cure you or try this diet and it will make you better. You have to decide what you think will be the most beneficial.
Glad you wrote back. I can give you some tips on your constipation. And I want to encourage you to ask your doc to order a CT scan for your abdomen, I would feel better knowing previous ultrasounds didn't miss anything. That orange swollen mouth of yours needs to be looked at, too, by a gastro doc. Hope your stools and urine are looking normal color.
By the way, sorry I keep up with common duct obstruction, but it's a larger duct that three smaller ducts EMPTY INTO, and it's the common bile duct that empties into the beginning of the intestinal tract. The duct itself can get a growth in there that will slow or prevent passage of bile from the liver (and your previous gallbladder) and pancreatic enzymes, which you need both those items for your food to digest correctly... lack of bile can create your orange mouth, change color of digestion, and make it slow to move. That's the only reason I keep bringing it up, and it's why I think a CT scan of abdomen would be important.
You probably know the drill on constipation, but Acidophilus milk (probiotics) on Cheerios (fiber) every morning with a little orange juice and scrambled eggs (protein) and a glass of water should help two things, your digestion and your fatigue, with the protein reducing fatigue. That discomfort you feel in the morning after breakfast is your bowels wanting to move, but since you're constipated, that urge with no results is gonna make you miserable. Eat a salad (fiber) with dinner pretty much every day. Drink a couple extra full glasses of water daily. Do some form of exercise daily too, even a short easy stretching routine in the house will help keep your muscles toned so digestion works better, and of course walking on a nice day around the neighborhood is great for the constitution.
I don't know too much about white blood cell counts, either, except it's a marker for infection and illness. I just know it has to be monitored in a sick person. I think you have become a sick person. I hope the scar from your surgery doesn't hurt too much and has healed up good from your gallbladder surgery. While I don't think any amount of coats and sweaters will help your chills, some soft "long underwear" will keep the heat in... husband puts his on beginning of winter and wears them throughout the season, he's a coldish kinda person.
I continue to hope, despite all I've mentioned, once your constipation settles down to what is more normal for you, that the color of that and your urine will settle out, and your nausea will dissipate, which is the most annoying aspect of your illness. And since your upset tummy, headaches, wierd tongue, those are not right, then I hope your docs will continue their investigations of those items.
First, I am having a similar situation brought on by an antibiotic I took for a sinus infection (it was azrithromicin).
In order to keep your sanity focus on what you CAN do. Today, I can wash my face to feel better (it's a bad day). You have to focus on what is possible for you and try not to dwell on what you aren't able to do right now. It's important to your peace of mind.
Probiotics to replace your flora: Saccharomyces boulardii is one to research. There was an article on CNN about this http://articles.cnn.com/2009-03-10/health/healthmag.probiotics.stomach_1_boulardii-probiotic-saccharomyces?_s=PM:HEALTH Take a look. Also make sure you are taking a good quality probiotic with Lactobacillus strains to repopulate your gut. I find that sitting or lying down during the day makes my symptoms worse. Not sure why but it does. Even though you're tired try to move at least a couple times an hour and see if that doesn't help you feel better.
I wish good health for us all - we will get through this.
Endocrinologist says it isn't hormonal that she can tell. But with my symptoms, she is recommending a neurologist and a hematologist. She says some forms of siezures that effect the involentary nervous system present themselves with symptoms very much like mine. And the hematologist is self-explainitory. She says they are some of the best internists out there and figure out a lot of the hard, weird cases. We will see where that goes. Not a long update for now. I hope youall are doing well. Thank you and have a good day.
Well, the hematologist.oncologist is one hell of a nice guy and is very understanding. So relieved. He ordered tons of blood work that I should be hearing back on soon and I had an MRI of the head w/ contrast and a CT w/ contrast of my abdoman and pelvis Monday. I am still getting the orange coating to my tongue but it is swollen now and pale. I still get headaches but they are now on an almost daily basis.
The hematologist said that I do have mild Thrombocytopenia. I asked him about depression as it keeps cropping up by outside sources and he said no. He said depression in these cases are natural but that doesn't mean it should go untreated if needed. He explained that this type of depression is called organic depression - it grows from something else or stems from something. He said no matter how sad I get I can't make my platelet count go down. Period. And talking with my doctor about celiac as it too crops up still and is recommened that I go at least 2 months trying he explained that while going without gluten is one of the easiest and fastest ways to rule it as a cause is is not the only manner to diagnose it and I have done all three. He is certain it isn't and says only a handfull of my symptoms fit to begin with. He said for all of my symtoms (symptoms) to fit I would have to have a severe form that would have shown up on tests and would have at least gotten better when I went 4 weeks gluten free.
The Hematologist/Oncologist wrote that on the side of his paper low platelets, anemia and chronic infections... so now I'm just playing the waiting game again. Thank you all again and I will keep you posted.
Yes, I did have my gallbladder removed as it had stopped working. Thanks for the suggestion though. As well...I am NOT giving up on the celiac disease... Please understand I went that path and found no resolution. I had the biopsies, I went a month (at least) fanatically gluten free. With NO improvement. I still felt sick. It was at my gastrointerologist's say that I stop that diet as I did NOT have it. Even then I wanted to be doubly sure so I had the blood work done. I read how to get the best results for this and did what I needed to. When I requested this I got very little support from him but he did it at my request anyways. There wasn't any inflamation (inflammation) at all, let alone that would suggest the irritation that comes with celiacs disease.No. So please stop acting like I am ignoring this possible life saving diagnosis.I would not have had an abdominal surgery to remove an organ if I beleived it was something as simple as removing gluten from my diet. As I have said a number of times already, there is also no direct corrolation between when I eat, what I eat and the symptoms. I can go days eating and be great for the most part and then out of no where get knocked off my feet. My bowel movements do not directly corrolate with my symptoms. As such an advocate for celiacs disease I'm sure that must say something as one of the key components in correctly diagnosing it to match up the symptoms with the consumption of gluten products in any form. Which I can assure - I paid attention to.I appreciate your advice but I will not stress anymore that I am past that point. I am very well aware of what a hematologist/oncologist specializes in and I know why I am seeing him. I was refered to him for specific reasons and I am happy to say they found something. I have an immune deficiency disorder. I am severely IgG subclass defecient and IgA deficient. I go on Tuesday to discuss treatment. He said over the phone a port may need to be put in as I need to have a series of infusions with plasma that will provide the immunoglobulines (spelling is ack) I don't have. The two combined make for difficult treatment and there may be a few causes as to why the B-cells are not matureing into the appropriate immunoglobulines. We are at the begining of this and he told me he strongly feels we found the "tip to the right ice-burg". I will keep you all posted. Thank you again.
Please realize that we are trying to help you with our suggestions. There is no need to get angry at me or anyone else just simply because of our opinions. I have been thinking very hard trying to figure out what you might have, even while I am currently in the hospital and have been for 2 weeks. There have been 48 posts back and forth between me, you, and others trying to help your symptoms. I said you were giving up on the "idea" of celiac disease, not on the diagnosis/treatment. I will stop talking about that now, and I would recommend starting a post on a community more fitted to your new diagnosis. Congratulations on hopefully finding a cure to your symptoms.
Patient915 - I wasn't angry. Not at all. I barely know you and and wouldn't even begin to have the capacity within that little knowledge to be angry. I appreciate your feedback. And I rest assured knowing that you are only person who took it as such. I am sorry you see me that way. But understand that in those posts it is hard to pick up a persons tone and in the last few posts from you, it sounded very 'to-each-their-own' . And in truth the last bit 'was' focused on you to stress the point - and only you, as you kept pressing it. Once mentioned would be an opinion.. thrice goes into being pushy. Was I angery.. goodness no...... Frustrated?...Yes. As someone who is sick I think you would understand. I wish you well. I am sorry to hear of your current position. Whats going on? I don't think you've mentioned what is ailing you. Please keep me posted on how you are doing.... and I will continue to post as I see fit with whichever discussion board I find helpful. Thank you again.. and please.. don't take it personally as I have no way to make this any more impersonal than it already is.
Well - they are calling it CVID - Common Variable Immunodefeciency Disease. Its hereditary. I go on Tuesday for my first round of globulin infusion therapy. It's almost too good to be true that they found it. I am excited and nervous for the treatment and pray to God it gets me back to as normal as possible. It can acocunt for just about everything. Including the tongue coating. If the tongue coating is bacteria - my body hasn't been able to fight anything. I also tested really high on the EBV test so I am also toting a heavy case of Mono which I had years and years ago. The only downfall is that the treatments are thousands and thousands of dollars each and my first round of treatments will be once a month for 4 months - we will see how my body takes it and go from there. Thank you all again for all of your feedback and I hope you guys are doing as well as you can.
I too had the problems you have had. Severe nausea every 2-3 months that lasted weeks to months and every test in the world going on for 4 years now and numerous hospital stays. This February they finally did the last test possible. It's called EEG of the stomach and found that I has tachygasteria. My stomach was pumping too fast. Suppose to be 1-4 beats a minute mine was 6-8. They put me on a combination if desipramine and Xanax and wahla it's been a year since I've been sick. Hope this helps.
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