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I am going to keep this short so everyone will read this:
My husband Scott recently had a Colectomy with an ileorectal anastamosis. He is a Chrohn's Patient.
2 days after his surgery he had a bleed, lead to him in ICU with low H&H (blood count), then to him passing out, then to him receiving blood.  I knew something wasn't right. I insisted another Dr. look at him and after A WEEK finally the Dr. saw him (one day after he was supposed to be discharged) They figured it could be heart or a clot but wasn't convinced of either. They did an EKG and a blood test called a D-Dimer (it tells if you have a clot) the D-Dimer came back positive that he had a clot so they did a CT scan with Angiography (if you just do a normal CT scan you can see small vessels) He had 3 filling defects, a infarction (no blood supply so like a heart attach) in his lower left lobe. When you have a Pulmonary Embolism (blood clot in your lungs) there isn't much they can do but put you on blood thinners and hope for the best. They started him on blood thinners and did more tests (a 37 year old should not have clots) turns out he has a condition called Lupus Anticoagulant or Antiphosolipid syndrome, or Hughes Syndrome. It is an auto immune disorder that people that already have an auto immune disorder can get.
If you have Chrohns, Colitis, Lupus, Ruhmatoid Arthritis, or any other auto immune disorder you can have this too. MY QUESTION if this a possibility why are IBD patient tested for this regularly. My husband has to be on blood thinners for the rest of his life.
So two lessons to take from this.
#1My husbands only symptom of a PE was high heart rate that can be anything. Other symptoms are shortness of breath, tightness in chest, sharp pain anywhere your lungs are, high heart rate, low blood pressure.
#2 if you have IBD ask your dr about being tested for Lupus Anticoagulant. It is usually inherited, but not necessary. It could mean your life!

 Reply posted for wildcat.

wow this is amazing information. I have found with Kaiser that you have to pretty much figure out what you need and have the Dr's do the testing you found out from non kaiser dr's.
I will do that, and let you know what comes of it. It makes me feel better and not so helpless in getting answers.
I am actually going to get records of his hospital stay and let you know exactly what tests they did. I did discuss with dr about right heart strain and they did not test him for that because he does not have the symptoms of right heart strain. Is this something that takes a while to develop? (swelling legs, bulging neck veins etc) or is that something that will show up later? I is trying to be active and it wears him out. He is in little to no pain from the surgery, but just walking a bit and he is sweating, really pale, and winded. He is a very OCD personality and he can't just sit there and do nothing. I don't know if I should just let him wear himself out learn the lesson or what? I am not his mother, I don't want to keep telling him to slow down, but can he do damage by doing to much (outside his surgery in regards to his PE) I appreciate all the information that you have given me, I also have an autistic son and am used to fighting, so it looks like I am going to have to fight for my husband as well.

 Reply posted for scottswife.

also- if he's still in the hospital on a heparin drip bridging to coumadin- please make sure they are regulating the heparin based on a heparin assay - not APTT. We get consulted all the time and the patient has a known LA, on heparin- and the DRs are adjusting the heparin incorrectly by aptt results!! So the patient sits for days basically untreated for their PE...

 Reply posted for scottswife.

If all he had was a +LA (not protein C or S def) then he doesnt need to come of coumadin for retesting of the LA as it does not cause a false positive. If his MD insists- then he can come off coumadin and go on Lovenox 1mg/kg/ every 12 hours for a at least 2 weeks prior to retesting (if normal kidney fcn). Lovenox is a self injection. This is what our patients do that have to be off coumadin. We repeat @ 12 wks since many of these tests can  have some abnormalities during an acute illness.  Our Drs would have done an ECHO to look for RV strain- then this is repeated @ 6wks- this is help determine if the patient might have prob more "long term". If a  pt does have RV strain (which is not uncommon) on first ECHo then we are looking for improvement at 6 wks. His body put the clot there- heparin, coumadin, lovenox do not dissolve the clot (only TPA etc) and his body will dissolve it over time- this takes weeks to months-sometimes not completely resolved. We would see him back in 3 months-repeat testing-then look at entire hx, family hx, events that occurred during the PE etc and make a decision whether long term AC is appropriate. i would strongly suggest he f/u with a thrombosis specialist (vascular med or a hematologist that specializes in thrombosis) We have a thrombosis center and i can tell you often patients are told LT but it's not appropriate...hold this helps!

 Reply posted for wildcat.

Thank you for that info. I know they took several vials of blood and the Dr. seems pretty sure that is what he has. I did some extensive reading on the disease and it did say to confirm dx that another test should happen 6 weeks later, but to do that he has to be off coumadin. From your experience, is the risk of having another blood clot worth checking to see if this is what he has? I know Coumadin has its risks he is an electrician and is very active, so to be on coumadin puts him at major risk, however a blood clot could also be life threatening.
I was not able to post it due to restriction on type but he had an incident a couple years ago after a long car ride they did a CT scan but did no do a angiogram. His sats where in the 80's chest pain etc. In his recent CT scan he had scarring which was in the area he had pain in. His Grandfather also died suddenly of a heart attack at 47 as well. He did have a PICC line for TPN and it had fibrin on it and they ultrasounded his legs and arms and found no other blood clots.
I have an extensive medical background and I knew something was wrong with his heart rate, the nurses kept telling me that they did not know why, but kept saying they did not know why. He is also having problems getting his Hemoglobin up. The last test still showed it at 10 they gave him blood at 8.8/9 because he passed out in the bathroom. His heartrate is still at 99 resting 120+ active and his blood pressure is 100/60 low for him. How long doe sit usually take your body to dissolve a PE? Thank you for any information. I feel like I got more info in your 1 post than I got from all the Dr.  (Kaiser!)

 Reply posted for scottswife.

Sorry to hear your husband has had such a difficult path. I am not sure what panel of blood tests your husband had, but please be aware that testing positive once for Lupus Anticoagulant is not indicitive of life long anticoagulation. This can be a  transient finding and needs to be repeated in 12 weeks. Now if he had additional abnormal things show up in a hypercoag panel-that's different. I can say this having worked with a vascular medicine specialist for 8 years at a major medical center. It is not uncommon to be dx with a blood clot after a major surgery, prolonged hospitalization, immobility etc. We often treated patients after bowel surgery who developed blood clots in their arms (had lines placed for TPN, ATB) or legs which then can break off and travel to the lung. We have seen lots of patients who have what we call a "situational" blood clot (happened during a period of illness, post op etc) that may have tested postive for LA- was repeated 12 wks, then again 12wk and was negative. They do not require Life long blood thinners. So this may be helpful to know- and possibly not mean life long for your husband.