Gi problems due to pericarditis, myocarditis, cardiomyopathy...

My husband was diagnosed with pericarditis in January of this year. He was hospitalized in April for this. We went through the ringer- it was first a lymph problem, could be cancer, it is a fluid problem in the heart, lungs, stomach. He has now been diagnosed with pericarditis, cardiomyopathy, possible myocarditis, on the verge of constrictive pericarditis. The doctors have no answers as to why he is still in pain, still bloated, headaches, blood rushes to the head, nausea, every symptom possible- he has. He has gone through every test, endoscopy, colonoscopy (which showed CMV virus and coxsackie virus- not "running" around anymore- dormant), echo's, CT's... everything.
He is now having a lot of GI problems... bloating, stomach pains and cramps.... all the time. Nothing helps, does not go away.  They have no answers for us. The doctors are acting like we are a burden to them. They don't want to take the time to talk or do research. We are wanting to know if anyone else has gone through this. Is this or could this be chronic? We serious have no answers from the "experts". We are at our last straw. Please help! Any suggestions?