What do we do when there are no answers?

[tippytulip]

My husband has been to the ER a total of 4 or 5 times (I'm starting to lose count) in the last 2 weeks.  It started out as dizziness.  Later, he went due to severe diarrhea and cramping.  He also visited his pcm who just went with whatever diagnosis the ER was giving and each time a new symptom popped up, he was told to go to the ER.  Typical actions of a military doctor.  When he had bloody stool, they finally admitted him into the hospital and diagnosed him with colitis.  The doctors at the hospital tested blood, stool, did a colonoscopy, and biopsy.  At this point, his pcm finally referred him to a gastroenterologist.  When my husband met with the gastroenterologist who reviewed the results from the hospital's gastroenterologist.  My husband was told that yes, he has colitis, but he's never seen a type such as this.  Also, the symptoms he's having such as dizzy spells doesn't make sense even though it is in direct relation to abdominal pains.  Now we are at a total stand still.  They don't know how to treat him since they don't know what he has.  They can't provide the military with a diagnosis so he is being forced to work through it.  Obviously, they aren't taking additional steps to find out what he has.  The answer so far has been, 'we don't know what you have, so you must not be sick.'  His condition is very severe and not typical of the temporary issues of colitis.  Honestly, I don't want to wait to find out what is wrong after an autopsy.  What initiative can I take to get the doctors to work harder at determining the problem?

[Pherstun]

The doctors can't always specify from tests what type of colitis a person has.  I know from having had a colonoscopy and they call it 'indeterminate colitis' but they say they're treating me for Crohn's so that's what I class it as.  If you tell an insurance company you have 'indeterminate colitis' they won't insure you!

[tippytulip]

Here is an update.  My husband told his superiors what the medical staff at the clinic were saying.  Things such as, "This is all in your head.  Your manifesting these symptoms."  So several higher ups on the chain of command went down to the clinic to reprimand the staff and get things moving along.  He has been set up with a number of referrals (such as Ears, Nose, Throat doctor, etc.) to try to identify if there is another source for his other symptoms (fever, dizziness, etc).  As for the colitis, biopsies were taken but the type is still undetermined.  Many things such as Crohns were ruled out but the gastroenterologist claimed he has never seen this type before.  A more experienced doctor is being flown in a couple weeks from now to examine the results.  Hopefully more answers will come of that.

[whisperwolf]

Did they test him for infections, parasites?  The dizziness can be from blood loss, especially if he is anemic.  Was your husband recently on antibiotics?  If so, he should be tested for C. Diff.  

The doctor who did the colonoscopy would have done a biopsy of your husband's colon and it would have told him what kind of colitis they are dealing with.  

Here are a few:

Eosinophilic Colitis is an allergic type colitis usually from an infection such as C. Diff.  It usually resolves after a year or two.

If he has Ulceritive Colitis;  UC is a serious illness and so is its cousin, Crohn's Disease.  Both are considered Autoimmune Diseases.  

[TrudieC]

I'm so sorry he is suffering like this.  One would think they could tell the military that he has colitis or at least internal bleeding to get him off work.  Are you able to go and see the gastro doc with him?  I don't know if this is the case or not but I know my husband just can't talk with doctors.  He laughs off things and doesn't stress how bad it is and then the doctor doesn't take it as serious.  A real heart to heart with the doctor about the impact this is having and pleading for him to give him what he needs to get off of work and to get treatment is necessary.  Have they given him any meds?  I would think they would have put him on prednisone.