Discussions By Condition: I cannot get a diagnosis.

25 year old mail, severe abdominal pain and other symptoms

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: emerge555
  • April 26, 2009
  • 06:17 AM

I've been having the following symptoms since last September. Each episode usually lasts about 24 hours or so. I had one in September, which I believed was a simple stomach flu. It returned in November, then again in December. In December I started having episodes once a week, sometimes skipping a week, up until March. Now, I am having it every single day, for the past 2 weeks. I cannot live like this, and need help. I will outline the symptoms and what my doctors have told me below.

Symptoms:

It usually begins with a bloated feeling in my stomach, between the bottom of my sternum and my belly-button. It is a very uncomfortable feeling, and makes my abdomen very sensitive to the slightest touch. The bloated feeling is accompanied by a dull pain throughout the entire area. The pain isn't terrible, maybe 3/10, but the discomfort is very noticeable. This bloated feeling seems to come at anytime, regardless of what I've eaten, or even if I've eaten at all.

The real problem begins once I lay down. If I am experiencing the above bloating, lying down triggers an onset of other symptoms. Within a few minutes of lying down, whether flat or on my side, the bloating feeling turns into a severe burning pain (8/10) all throughout my middle abdomen. Also, I will have to use the restroom about once every 30 minutes, as long as I continue to lay down. Restroom use consists of normal urination and normal bowel movements. It is not diarrhea, as it is in no way watery. The feces will usually be completely normal the first time, but in subsequent bowel movements it will become smaller and skinnier, about the size and width of a finger. This bathroom use will continue every 30 or so minutes as long as I continue to lay down, the urge to go is impossible to ignore.

Along with the burning pain and the urge to go to the bathroom, I will usually start having chills within a few minutes of laying down. I do not have a fever. The chills cause me to feel like I'm freezing, and I begin shaking uncontrollably with my teeth chattering. No matter how many clothes I layer on, as long as I continue to lay down, the chills will not stop.

If I decide to give up on trying to sleep and sit or stand up, the chills and bathroom urges will go away and the burning pain will get slightly better. The burning pain is the only thing that does not fully go away once I get up, as it seems to be impossible to get rid of once it comes, though it will get noticeably better if I get up. The bloating, discomfort feeling remains no matter what I do.

Treatment/Diagnosis:

None. I have been to the E.R. twice over this, both times leaving without a diagnosis. I have been seeing a gastroenterologist since my 1st E.R. visit, and he has performed the following tests: endoscopy, colonoscopy, CT w/ contrast of the abdomen/pelvis, small bowel series x-rays, stool test for C. Diff. and WBC, and tons of different blood tests. The endoscopy revealed chronic esophagitis, though this is unrelated to my symptoms. It also revealed H. Pylori, which we treated and killed succesfully, though this did not help my symptoms either. Colonoscopy showed diverticulosis, which I was told was not a big deal and is also unrelated. CT showed a small cyst on one of my kidneys, also unrelated. Every other test has come out clean.

My GI has given up. He has no idea what is causing it, though he suspects that IBS is responsible for my bowel movements, but says it does not explain the chills and burning pain. He is referring me to an internist, but the appointment is still far away. I am currently taking omeprazole for my esophagitis, one 20mg tablet every other day, and the probiotic Align to see if this will help. It has been 3 weeks with Align and things have only gotten worse.

I can no longer sleep because of this. I can't lay down, and I have trouble falling asleep sitting up, so I am often awake for days at a time. For the past few weeks, I now have the bloating/discomfort 24 hours a day, every day. It is unbearable. I have tried every OTC medication I can think of...anti gas medication, stomach upset, bloating, you name it. Nothing has worked.

Please, if anyone can help in any way, I cannot spend another month without sleep while I wait to see an internist, every day has been an absolute ***l for my wife and I. If there is any other information I can provide that could be of assistance, please let me know. I would be extremely grateful for any help I could receive with this matter.

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6 Replies:

  • No one has any idea what could be going on? I'm truly desperate here, haven't slept in weeks, and spend every waking hour in pain. Please, any help would be very, very appreciated.
    emerge555 1 Replies Flag this Response
  • I have been having the exact same symptoms. Symptoms started a month or so ago with severe bloated feeling in my abdomen, really a tight, bloated feeling. Then later the stomach burning started but it would be worst when I woke up in the morning. This past week it has increased to severe stomach burning soon after I laid down at night. I also have to get up every 30-60 minutes to use the bathroom. Bowel movements start out normal then get really skinny like an index or pinky finger and I pee each time, just a little. I've hardly slept this week and I look and feel weak and very awful. I just saw my doctor and did the blood test for H. Pylori and will get results tomorrow. The thing is, I'm 7 months pregnant and the doctor says there isn't too much they can do while I'm pregnant. I am falling apart emotionally from constant pain and discomfort and lack of sleep. I'm with you, my friend. Keep trying to get answers. Have you tried a medical doctor who is also a wholistic/naturopath? That's my next step. It seems like when I take probiotics and wheatgrass that the pain and bloating are less. Maybe you could try it? Couldn't hurt to try while we wait on answers.Good luck.
    Anonymous 42789 Replies Flag this Response
  • Testing..first post didn't post after all..
    Anonymous 42789 Replies Flag this Response
  • My guess is IBS too. IBS can be triggered by stress or even an acid imbalance. Also I would question a possible allergy to something like gluten. I am allergic to milk but was given milk all my life. I did not even know until I was an adult that drinking milk should not bring on diaherria. I would say an internist for starters. Sometimes a med that helps relax the stomach muscles can help with the pain.
    lucipearl70 11 Replies Flag this Response
  • From what you are saying it might be abdominal epilepsy (although i think it lasts a bit to long, and the relationship with the body position is a bit strange to but I believe it could be explained by a vagal reflex that triggers the crisis). You could also be having something called an abdominal migraine. You could go see a neurologist, have an EEG (ideally in the position that triggers the crisis and in a position that is neutral) and have a brain MRI. The good news is that this are both treatable conditions, they are related (migraine is related with epilepsy because it is believed that the same type of paroxismal electrical activity produces them) and they respond mostly to the same medication. Also a neurologist can rule out an autonomic nervous system disorder.Also, I think that vasospasm from other reasons and trombofilias and vasculitides should be ruled out (they could cause ischemic pain). In order to do this your doctor or a rheumatologist should do some blood tests to see if u have antiphospolipid antibodies syndrome (anticardiolipin, ant beta 2 GPI, lupus anticoagulant etc.), Leiden V factor, a deficit in the S or C protein, or a primary or secondary vasculitis (inflamation tests -ESR, fibrinogen, C reactive protein, anti DNAds antibodies, anti Ro antibodies, anti La antibodies, anti Sm antibodies and ANCA and so on). Inflamation of the bowels could be in the context of a primary vasculitis called Behcet disease (a rare disease, but more frequent in mans) so you should check on the net to see if u meet diagnostic criteria for it. This are all very rare posibillitis The important thing is to get a diagnostic in order to get a treatment.Good luck.
    Lauritka 7 Replies Flag this Response
  • From what you are saying it might be abdominal epilepsy (although i think it lasts a bit to long, and the relationship with the body position is a bit strange to but I believe it could be explained by a vagal reflex that triggers the crisis). You could also be having something called an abdominal migraine. You could go see a neurologist, have an EEG (ideally in the position that triggers the crisis and in a position that is neutral) and have a brain MRI. The good news is that this are both treatable conditions, they are related (migraine is related with epilepsy because it is believed that the same type of paroxysmal electrical activity produces them) and they respond mostly to the same medication. Also a neurologist can rule out an autonomic nervous system disorder.Also if u still don't get a diagnostic, I think that vasospasm from other reasons and trombofilias and vasculitides should be ruled out. In order to do this your doctor should do some blood tests in order to see if u have antiphospolipid antibodies syndrome (anticardiolipin, ant beta 2 GPI, lupus anticoagulant etc.), Leiden V factor, a deficit in the S or C protein, or a primary or secondary vasculitis (inflamation tests -ESR, fibrinogen, C reactive protein, anti DNAds antibodies, anti Ro antibodies, anti La antibodies, anti Sm antibodies and ANCA and so on). There is a primary vasculitis called Behcet disease that can cause inflamation of the bowls (with ulcerations or only with microscopic changes) and can also cause ischemic pain so u should chek it on the net and see if u think u meet diagnostic criteria. Also a disease called paroxysmal nocturnal hemoglobinuria can be responsible for somthing similar to your simptoms. This are all well managed conditions so the important thing is to get a diagnostic in order to get a treatment.If nothing comes up then is probably IBS (mans have it more often for obvious reasons :) ) but then again I think that if this were the case you would associate your simptoms with what you are thinking and feelling (scarred, usless, guilty, lonly) when you are lying down to sleep (or what u were thinking at when the simptomatology begun) and not with the position itself.Good luck.
    Lauritka 7 Replies Flag this Response
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