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1417393 tn?1292448326

Any feedback is a GodSend.

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.
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Avatar universal

Have you heard of adrenal fatigue? It can cause a lot of the symptoms you have. I also have yellow stool, fatigue, bruned out in the morning, high stress, etc.
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Avatar universal
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.
Shirl
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1417393 tn?1292448326
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.
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1417393 tn?1292448326
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.
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Avatar universal
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.
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1417393 tn?1292448326
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 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.
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Avatar universal
I believe her gallbladder has been removed.  It is fine if you want to give up on the celiac disease idea but just remember that a hematologist/oncologist is not an expert in celiac disease.
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611999 tn?1298758291
Have you thought of having the gallbladder removed to see if it is the source of your problems?  A GB that is not functioning well can cause some weird stools and just feeling horrible.
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1417393 tn?1292448326
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 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.
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1417393 tn?1292448326
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.
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Avatar universal
Hi sweetie, a couple of things.

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.

Hugs

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Avatar universal
Hey Scarlet,
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.
GG
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Avatar universal
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.
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1417393 tn?1292448326
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.
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Avatar universal
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.
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1417393 tn?1292448326
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.
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Avatar universal
Scarlet,
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.
GG

I'm sorry all this is still going on!  I know you are worn slam out.  
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Avatar universal
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.
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Avatar universal
Good, I'm glad you are getting somewhere with a doctor.
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1417393 tn?1292448326
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.
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1417393 tn?1292448326
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.
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Avatar universal
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?
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1417393 tn?1292448326
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.
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Avatar universal
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.
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