Discussions By Condition: I cannot get a diagnosis.

Recurrent SEVERE abdominal distension

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: gingergirl86
  • August 1, 2010
  • 04:56 AM

Every. Single. Day. It's been about 10 months now that every night, I simply want to curl up and die. My stomach swells to the point that I look six months pregnant. I feel frequent movement through my lower esophageal valve (like a burp, but a valve too low), which happens every time I put anything in my stomach, even water, and will last for hours after a meal. The bloating is far worse at night, even if I've tried not to eat very much during the day. Nothing helps AT ALL, and I have tried everything over the counter and some prescription meds.

Tests I've had done that have come back normal:
2 gastric emptying studies (1 60-minute and 1 4-hour)
a CT enterography
a barium MRI (showed severe constipation, for which my doctor prescribed what they give as a colonoscopy prep, did not help at all, and since then with the use of probiotics my bowel movements have become more regular, though I still feel some constipation)
all blood-work (celiac was "equivocal")
Food allergy testing showed mild (extremely mild) sensitivities to peanuts, eggs, beef, and pork, but I rarely eat these foods anyway and haven't noticed anything significant when I have
I am lactose-intolerant but do not consume dairy (except for Greek yogurt, and that is only sporadic and does not coincide with my symptoms)

Things that have not worked:
Gluten-free (it's been only a month or so, so it may be early to say for certain)
Cutting out artificial sweetener (that's only been a week, but things feel no better)
Rifaxamin (one 10-day course)
Supplements, including ginger, peppermint oil, digestive enzymes, garlic oil, bromelain, spascupreel, l-glutamine, and betaine HCL. I still take the ginger, enzymes, garlic, and peppermint, as well as two types of probiotics (Phillips colon health which definitely relieves some constipation, and Primal Defense). I often take laxatives, but the bloating persists.

I'm going to the Mayo clinic in a couple of weeks, but I am just so desperate, I feel sick every single day and it's destroying my life. I am kept up at night by the swelling in my stomach and I often wake up in the morning still bloated from the night before. I also get frequent nausea and no amount of antacids exists that will soothe my heartburn. I have a mild case of Crohn's but it seems under control (no bloody diarrhea or signs of stricture, bloodwork is normal).

I don't really feel pain beyond the sense that my stomach walls are being stretched beyond capacity. I also have strange lumps on my abdomen which appeared on an ultra-sound to resemble lymph nodes, though it's a rather peculiar place for them (right down the center of my abdomen), and they get tender when I am very bloated. My navel will also protrude, but no hernia was seen on the ultra-sound.

Someone help me, I don't know how much more of this I can take.

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10 Replies:

  • look into colonic inertia. your colon just don't move so everything is backed up into the small bowel/stomach and causing distension.
    Anonymous 42789 Replies
    • August 15, 2010
    • 11:04 AM
    • 0
    Flag this Response
  • Every. Single. Day. It's been about 10 months now that every night, I simply want to curl up and die. My stomach swells to the point that I look six months pregnant. I feel frequent movement through my lower esophageal valve (like a burp, but a valve too low), which happens every time I put anything in my stomach, even water, and will last for hours after a meal. The bloating is far worse at night, even if I've tried not to eat very much during the day. Nothing helps AT ALL, and I have tried everything over the counter and some prescription meds. Tests I've had done that have come back normal:2 gastric emptying studies (1 60-minute and 1 4-hour)a CT enterographya barium MRI (showed severe constipation, for which my doctor prescribed what they give as a colonoscopy prep, did not help at all, and since then with the use of probiotics my bowel movements have become more regular, though I still feel some constipation)all blood-work (celiac was "equivocal")Food allergy testing showed mild (extremely mild) sensitivities to peanuts, eggs, beef, and pork, but I rarely eat these foods anyway and haven't noticed anything significant when I haveI am lactose-intolerant but do not consume dairy (except for Greek yogurt, and that is only sporadic and does not coincide with my symptoms) Things that have not worked:Gluten-free (it's been only a month or so, so it may be early to say for certain)Cutting out artificial sweetener (that's only been a week, but things feel no better)Rifaxamin (one 10-day course)Supplements, including ginger, peppermint oil, digestive enzymes, garlic oil, bromelain, spascupreel, l-glutamine, and betaine HCL. I still take the ginger, enzymes, garlic, and peppermint, as well as two types of probiotics (Phillips colon health which definitely relieves some constipation, and Primal Defense). I often take laxatives, but the bloating persists. I'm going to the Mayo clinic in a couple of weeks, but I am just so desperate, I feel sick every single day and it's destroying my life. I am kept up at night by the swelling in my stomach and I often wake up in the morning still bloated from the night before. I also get frequent nausea and no amount of antacids exists that will soothe my heartburn. I have a mild case of Crohn's but it seems under control (no bloody diarrhea or signs of stricture, bloodwork is normal). I don't really feel pain beyond the sense that my stomach walls are being stretched beyond capacity. I also have strange lumps on my abdomen which appeared on an ultra-sound to resemble lymph nodes, though it's a rather peculiar place for them (right down the center of my abdomen), and they get tender when I am very bloated. My navel will also protrude, but no hernia was seen on the ultra-sound. Someone help me, I don't know how much more of this I can take.Could you have hypochlorhydria (there is an HCL test on the web -- search for it)? Could it be caused by hyperthyroid (get a FREE T3 test, TSH may not reflect thyroid problems for YEARS)? Could hyperthyroid be caused by low copper? (Get a hair analysis at traceelements.com -- one of only two labs ot wash the samples, so get accurate results. Serum copper is NOT a measure of copper status as copper is stripped from needed applications for putting into the blood for MANY reasons. Check ithyroid.com and stopthethyroidmadness.com as possibilities as well.
    madanthony 1087 Replies
    • August 17, 2010
    • 00:56 AM
    • 0
    Flag this Response
  • Every. Single. Day. It's been about 10 months now that every night, I simply want to curl up and die. My stomach swells to the point that I look six months pregnant. I feel frequent movement through my lower esophageal valve (like a burp, but a valve too low), which happens every time I put anything in my stomach, even water, and will last for hours after a meal. The bloating is far worse at night, even if I've tried not to eat very much during the day. Nothing helps AT ALL, and I have tried everything over the counter and some prescription meds.Tests I've had done that have come back normal:2 gastric emptying studies (1 60-minute and 1 4-hour)a CT enterographya barium MRI (showed severe constipation, for which my doctor prescribed what they give as a colonoscopy prep, did not help at all, and since then with the use of probiotics my bowel movements have become more regular, though I still feel some constipation)all blood-work (celiac was "equivocal")Food allergy testing showed mild (extremely mild) sensitivities to peanuts, eggs, beef, and pork, but I rarely eat these foods anyway and haven't noticed anything significant when I haveI am lactose-intolerant but do not consume dairy (except for Greek yogurt, and that is only sporadic and does not coincide with my symptoms)Things that have not worked:Gluten-free (it's been only a month or so, so it may be early to say for certain)Cutting out artificial sweetener (that's only been a week, but things feel no better)Rifaxamin (one 10-day course)Supplements, including ginger, peppermint oil, digestive enzymes, garlic oil, bromelain, spascupreel, l-glutamine, and betaine HCL. I still take the ginger, enzymes, garlic, and peppermint, as well as two types of probiotics (Phillips colon health which definitely relieves some constipation, and Primal Defense). I often take laxatives, but the bloating persists.I'm going to the Mayo clinic in a couple of weeks, but I am just so desperate, I feel sick every single day and it's destroying my life. I am kept up at night by the swelling in my stomach and I often wake up in the morning still bloated from the night before. I also get frequent nausea and no amount of antacids exists that will soothe my heartburn. I have a mild case of Crohn's but it seems under control (no bloody diarrhea or signs of stricture, bloodwork is normal).I don't really feel pain beyond the sense that my stomach walls are being stretched beyond capacity. I also have strange lumps on my abdomen which appeared on an ultra-sound to resemble lymph nodes, though it's a rather peculiar place for them (right down the center of my abdomen), and they get tender when I am very bloated. My navel will also protrude, but no hernia was seen on the ultra-sound.Someone help me, I don't know how much more of this I can take.I would like to know what the outcome was when you went to the Mayo Clinic? I felt your pain when I read this. We have a situation in our family that's somewhat similar. My adult daughter (in her 20's) has extreme abdominal bloating to the point where it's hard for her to walk, and she sometimes feels that she can't breathe because there's not enough space for the air. She has had CT Scan, bloodwork, sonogram, parasite testing and all are negative and normal. She has regular bowel movements and no other symptons except she feels weak and lightheaded sometimes and has difficulty walking as a result of the bloating. We are desperate for answers and are thinking of applying to the Mayo Clinic in hopes that they will have some answers. Did you have any success there? Does anyone out there have any suggestions??
    Anonymous 42789 Replies Flag this Response
  • Folks,I am a 39yr old female experiencing the exact same feelings. I have, for no apparent reason that I can fine, extreme abdominal distention on a frequent basis. I am seeing Dr's now but wondering who may have found a cause/cure. I have had 2 abdominal hernia's and one groinal hernia. Not sure if they are related but certainly affecting the repairs when my belly is blowed up.Anyone with any more information to add would be appreciated.Tks,Sue
    Anonymous 42789 Replies Flag this Response
  • I am a 30 year old with the exact same symptoms, coupled with extreme fatigue, pain in the upper right quadrant of my abdomen and, as of today, a low White blood cell count.I am scheduled for an abdominal/pelvic ultrasound 2 days from now and a CT scan soon. I wish I could offer some assistance, I am in the medical field and I am clueless as to what this is. Hoping one of you guys has an answer soon. Please update if you find answers....Wishing you all the best. Prayers for an answer....
    Anonymous 42789 Replies Flag this Response
  • Hello Gingergirl, I was so interested in you story and how you made out with treatment and or testing at the Mayo clinic. Can youplease update me as I suffer from an identical problem and after 100 of diagnostic tests (that were all negative) and taking many pillsI am still no better. My doctor keeps saying IBS but I am so scared they are missing something that could potentially be life threatening.Thank you so much and God bless.
    spflan9 1 Replies
    • October 4, 2011
    • 01:46 AM
    • 0
    Flag this Response
  • I have been researching my symptoms for so long and saw this. Your symptoms are remarkably similar to mine. I had abdominal surgery for a birth defect then all the problems you described. They then diagnosed me with Crohn's and slow motility. I don't think I have Crohns. I'm gluten free and lactose intolerant I too have had all those tests! This is uncanny. But nothing works. Did you resolve your issue? I am so happy to not be alone
    Anonymous 1 Replies
    • December 2, 2014
    • 01:12 AM
    • 0
    Flag this Response
  • I have this weird disease for 8 years now. I gave up 3 years ago. Homeopathy definitely helped me for about one or two months, 3 years ago, but I didn't cure the distention. I spent my days with this pregnant belly. Some days are better than others. My boyfriend says I look beautiful in any case. But this of course affects my self esteem! He sees me so concerned about this that he told me he is willing to help me find out the cause of this chronic distention. It is definitely an issue in my life. I of course did all the tests and diets. I take activated charcoal sometimes at night to sleep. It helps! I wake up with an almost flat stomach. But I get distended again as soon as I have breakfast (it doesn't matter the food). Lately a mix of digestive enzymes, probiotics and Turmeric (this is the new thing) have helped me. I am waking up with no distention since I am taking this. But again is just a short relief in the morning. At the end of the day I look pregnant again. Endless cycle!
    Anonymous 1 Replies Flag this Response
  • Hi, I am also having these problems, from under my chest downwards I am bloated beyond belief. This tends to get worse as the day goes on and I feel like it is going to explode by night time. I have been trying all sorts of exercise, and diets but I am continually putting on weight. I have been reading lots of articles on this, but no-one seems to know any answers. I feel like I'm making a big deal about it and it is getting me down, however, I can no longer fit into any of my clothes and even buying a bigger size, nothing look right on me now. I am going to the doctors to hopefully help me, will let you know if I find out anything that might be of any use, but going by all your comments, I don't think any of the doctors have a clue. So glad I have found others with the same issue, although I wouldn't wish this on anyone....
    Anonymous 1 Replies Flag this Response
  • I have exactly the same problem. I recently had a CT scan that revealed an ovarian cyst ( seeing a gynecologist soon about that) that can cause what feels like bloat and a fatty liver which I just read up on myself and discovered it can cause the bloating among other things. I will see my PCP about the fatty liver. Anything I find out I will post.
    Anonymous 1 Replies
    • October 8, 2016
    • 05:47 AM
    • 0
    Flag this Response
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