Discussions By Condition: Gastrointestinal conditions

cannot get a diagnosis--intestinal problems and other symptoms

Posted In: Gastrointestinal conditions 17 Replies
  • Posted By: Anonymous
  • February 20, 2007
  • 06:31 PM

I also posted this on the Cannot Get a Diagnosis Board.

My husband, 39, has been sick for the last four years. It started with extreme constipation. He has traveled for work for the last ten years and has always had constipation issues that we attributed to travel.

Then he was constipated for seven days so he saw a doctor. She sent him to the ER for X-rays. A mass was found in his lungs. The mass later disappeared.

For the next three years he experienced:
Constipation, then diarrhea
Intense stabbing pains in the abdomen
A “hard” lower abdomen
Extreme loud belching
Dry heaves
Muscle spasms throughout his body followed by muscle weakness
Sometimes eye twitches, too.
Overall feeling badly in the abdomen
A few skin rashes—including fungal-though not for long periods of time
He has two lumps near the stomach that we have been told are fat deposits. They feel sore to him and sometimes the stabbing pains are here.

After three years of this, we went to a new doctor who scheduled an upper GI (this had been done in the past with no result). This time the test did reveal something.

He was diagnosed with gastric volvulus. His stomach had rotated down instead of up—like the usual volvulus. There is no history of internal surgery, car accident, etc before this.

A tube was put into his stomach to hold it next to the abdomen wall so that scar tissue would form and the stomach would stay in place.

There were complications that put him back in the hospital because the tube poked a hole through the stomach and there was a serious infection. (He was sent home but came back to the ER a few days later due to extreme pain. Pus started pouring from the wound that smelled like feces while in the ER).

He spent an additional four days in the hospital for infection and the surgeon says that they do not know what the infection was. Several large bags of pus were filled over the four days. They treated it with antibiotics.

The infection came back two more times sending him back to the doctor once and the hospital once. It was treated with antibiotics. He also developed a fungal infection due to the antibiotics.

Despite the infection, his white blood cell count was never elevated. He never had a fever until just a few minutes before the pus started pouring out of the wound.

Since then, he continues to have all of the symptoms except the belching and dry heaves.

He has been tested for numerous things including celiac, porphyria, gall bladder, etc. We were told it could not be a parasite b/c he would have died by now.

We were told by one doctor that he had IBS. We were told by another doctor that there was no way this was IBS.

We have no way to check to see if the gastric volvulus should have been caught before b/c one of the previous doctors lost all of the films from X-rays, upper GI, CT scan, etc.

We are at a loss. We really like our new doctor, but he doesn’t know what this is either.

Any ideas or help would be greatly appreciated.

Before this, he was healthy and active. The only problem he had were outdoor allergies which have actually gotten better in the last few years.

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17 Replies:

  • Since he has travelled so much, I wouldn't rule out parasites-- giardia symptoms in particular can go on for many years. My friend's mother had it for several years before getting diagnosed.
    Anonymous 42,789 Replies
    • February 20, 2007
    • 07:38 PM
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  • Do you know if she had any of these symptoms? Thank you.
    Anonymous 42,789 Replies
    • February 20, 2007
    • 07:46 PM
    • 0
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  • I agree, whoever said he couldn't have parasites because he would have been dead was completely wrong! Has he had a complete occult stool test done? This wouldv'e been the first test to try I think. Check for parasites, giardia, e coli, and candida (I suspect he has candida overload) Between the botched tube in stomach, and the doctor who "lost" his medical file and records you have a serious malpractice case. I'd contact a lawyer. Because of his history of infection and antibiotic use he needs to be taking a high quality probiotic to help his immunity and intestines. Antibiotics take the good out with the bad, and lead to "leaky Gut". Have you considered trying acupuncture? It works very well for GI disorders. To find one near you please visit www.acufinder.com. An Oriental medical practitioner will look at his symptoms differently and come up with a diagnosis based on a thousand year old method of medicine. Best wishes.DOM
    acuann 3,080 Replies
    • February 20, 2007
    • 07:54 PM
    • 0
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  • He had the stool test over a three-day period and nothing was found. The doctor said that parasites can be hard to find but that he did not think he had one. As far as malpractice, we really just want a diagnosis so that we can go back to the life we had before.
    Anonymous 42,789 Replies
    • February 20, 2007
    • 08:09 PM
    • 0
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  • Do you know if she had any of these symptoms? Thank you.She had basically all of the symptoms, although she lost tons of weight too.
    Anonymous 42,789 Replies
    • February 20, 2007
    • 09:11 PM
    • 0
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  • It seems like you would be able to find out what kind of infection it was in the hospital. I would ask your doctor to contact the surgeon.
    Anonymous 42,789 Replies
    • February 23, 2007
    • 04:13 PM
    • 0
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  • We have a new symptom. He is having weakness in his left leg to the point that he has trouble walking. Some recent blood work came back that his muscle enzyme is elevated as though he had just been working out. He spends most of his time in bed and rarely does more than walk a short distance. If this sparks any ideas, please, please write. We feel very desperate and any suggestions-even long shots-are welcome. Thank you.
    Anonymous 42,789 Replies Flag this Response
  • Has he had a colonoscopy? Is he still having constipation issues? Has he had his liver enzyme levels checked? Does he have any upper chest pain? Any heart issues?Your husband certainly has a troubling array of symptoms. Did you ever find out what infection he had? Was it iatrogenic, like MRSA?Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • They still say they do not know what the infection was in the hospital. He has had a colonoscopy. It revealed two small polyps that were removed. His chest does sometimes feel a lot of pressue and his blood pressure has been elevated. I don't think his liver enzymes have been checked, but he does have a fatty liver. There are so many symptoms, it is hard to include them all. He takes miralax three times a day and can go to the bathroom every few days on it. If he drops to one time a day, he cannot use the restroom. He was checked for lupus and lyme disease last week. Both were negative. He also had an MRI that revealed nothing.
    Anonymous 42,789 Replies Flag this Response
  • If you have it available, can you post the exact results of his Celiac blood test? Many doctors ignore high levels of antibodies if they are in the "normal range" and even ignore positive blood tests if the colonoscopy isn't done right (15 samples should be biopsied and examined under magnification, but it sounds like they found 2 polyps and got distracted). It sounds like he has an immnuno-deficiency, one of the common reasons why Celiac blood tests are mis-read. If his IgA was low (or even zero!) they may ignore any IgG and TtG other indicators of Celiac. There is also a possibility of non-gluten IgG auto-immune problems. I'd recommend testing for that, but it isn't quite available/mainstream yet :( Regardless of whether or not you find a proper diagnosis, please have him get his blood vitamin levels checked. The twitching, numbness, fatigue and muscle weakness (and the elevated enzymes indicating muscular damage) sound like they are related to a malnutrition condition arising from improper digestion. Even without fully understanding the cause, this secondary effect can be treated with B-12 shots and sublingual iron. Vitamins that have to be digested just seem like a waste of intestinal effort in this case.
    Azaral 152 Replies Flag this Response
  • If you have it available, can you post the exact results of his Celiac blood test? Many doctors ignore high levels of antibodies if they are in the "normal range" and even ignore positive blood tests if the colonoscopy isn't done right (15 samples should be biopsied and examined under magnification, but it sounds like they found 2 polyps and got distracted).I don't understand your point at all. You cannot diagnose celiac through a colonoscopy. An endoscopy, not colonoscopy, is the procedure by which biopsy samples are obtained for celiac testing. The fact that polyps may have been found in a colonoscopy is completely irrelevant and would not lead any doctor to ignore "positive blood tests".
    Anonymous 42,789 Replies Flag this Response
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  • I hope this doesn't post more than once as I have had some trouble posting. We had a doctor's appointment yesterday. He said it is definitely not celiac. Tests for lupus and lyme also came back negative. He was tested for Whipple's which is not back yet but the doctor said that is a long shot. From what I have read, some symptoms match, but constipation does not. A biopsy had been taken when the tube was removed. He put him on Flagyl since he has been on this antibiotic in the past and had some relief. The doctor isn't sure what is wrong, but this drug takes care of a lot of infections that this could be. If this doesn't work, he is going to send him to an infectious disease doctor. Our doctor does not believe it is an infectious disease but since he doesn't have another answer he said he will refer us. My husband talks to our doctor via phone about once a week and sees him about twice a month so he will now if the flagyl is working or not. Thank you for all of your posts. Any suggestions are welcome and appreciated.
    Anonymous 42,789 Replies Flag this Response
  • Parasites can live for decades in your body without anyone noticing. One parasite can lay 20,000 eggs a DAY! I've been through the same problems as your husband. Out of desperation I turned to self treatment. I bought some Parastroy online. One 3 week course made me feel like a new person! I couldn't believe the weird things that were coming out of my body! I had to take Miralax the second and third week, but I can say with 100 percent certainty that this saved my life! Besides, it can't hurt.
    sickofsickbeing 5 Replies Flag this Response
  • Hi Sorry to hear about your husband's problems. I sympathise. I too have been ill for a long time, 5 years in fact. I am suffering from more than one parasite infection, including worms. I made a post here some time ago when I first found out about my problems. I'd like to ask you a couple of questions: What are his stools like? Any evidence of mucous or blood? Anal itching? Does he suffer dizzy spells? Does he feel confused at times? Any pain in the shoulders/back? Any vision problems? I went through my own doctor first, had endoscopy, colonoscopy, and nothing major was found. (Apart from h-pylori bug but this was not causing my many symptoms). My doctors were perplexed as to what was causing me to be ill. I got so fed up I eventually had to take matters into my own hands. When I mentioned parasites to my doctor, I don't think I was taken seriously. I eventually got answers after finding a fantastic lab. Living with symptoms such as you describe with regards to your husband is very, very difficult. My illness has a huge impact on my life. I hope your husband gets answers. Wishing you both well. 2 Have Hope
    2 Have Hope 22 Replies Flag this Response
  • Have Hope, is that lab in your area? Or can anyone get access to it? I'd be very interested! Thanks.
    sickofsickbeing 5 Replies Flag this Response
  • Has your husband been checked for food intolerances and sensitivities? Though he might have tested negative for Celiac, he could very well have issues with gluten - which can cause a host of problems. Does he have several Amalgam/mercury fillings? This could cause issues as well.......I have heard a lot of good things about how affective acupuncture is. Might be worth a try.........Good Luck & don't give up!!
    Anonymous 42,789 Replies Flag this Response
  • I am sorry to hear that your husband is suffering so. :(I thought of something you may want to look into...Sarcoidosis :confused: it's a long shot. Sarcoidosis usually affects the lungs, but will also affect other organs. Please look it up. I was in the hospital for 7 days with an intestinal infection that caused such pain. The Dr.'s could not pinpoint my diagnosis. My sister was by my side banging away on the internet when she came across this diagnosis. The Dr's did not want to listen to her because .... after all .....However, they ran a few more test and gave me a medication given to patients with Sarcoidosis (med name sounds like CoalSoulJean :rolleyes:)and I was out of the hospital and ready to go home in 2 days. I took all of the medication and on my follow-up my Dr. said that if I have symptoms such as these again I would be back on this medication as this is a condition that will rest for a while and then pop it's ugly head up from time to time. I hope this is helpful and I really hope that you both find comfort soon.:)
    play1onTV 1 Replies Flag this Response
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