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
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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