Hello! Daniel here in South Florida. I’m a registered nurse, 30 years in operating rooms from nyc,santa fe,d.c.; big hospital,little hospital,big childrens’ hospital and now small community hospital. relatively healthy sixty year old. wife has IC in remission(interstitial cystitis,long story).two children 21yr old daughter(cellist) and 26yr old son(early music musician). music a big part of family life.(i need lessons!).
My “son-in-law” is 24 years old and was afflicted at age 15 with a condition (UC) from the side affects of acutane,acne medication. He has had flare ups before but recently has had one which has landed him in a hospital. Weight loss,bloody stools,terrible abdominal pain et al. my son,his partner of 4 years is with him trying to deal with being his lover’s advocate.
My concern is the treatment, plan of therapy and/or possible alternatives. Many insights here from UCers; difficult to advise long distance in the midst of 5 days prednisone therapy,morphine for pain; colonoscopy on the 30th sigmoidoscopy yesterday,”your whole colon is inflamed, need to remove it before it is too late.” “Prednisone hasn’t worked,doubtful remicade will improve situation.” He refused surgery, infusion of remicade today. Next infusion would be in ten days; stopped prednisone. Tylenol and morphine only meds. no UC diet.
My son speaks fluent Dutch,is wary of “big pharma’, but unsure of ways to proceed.
When is the doctor right?
Colon needs to be removed? It just seems a bit premature. No elevated temp at this point. My instinct is to get the hec out of that facility,but then what?
So I guess I’m venting here. Frustrated don’t know enough.
When does a person say “the doctor is right,take out my colon”.
Is this a socialized medicine modality of treatment? Cheaper in the long run? Don’t know the game, the rules; medical guide lines not clear long distance. What can you tell someone who is watching his partner suffer, waste away? “Don’t listen to those doctors,they don’t know what they are talking about.”
“Colon not acute, now is time to operate before it get’s worse”.
Individual decision. Hang in there, yet the guilt of possible peritonitis and further complications under pressure of the moment…. ah
…that’s my freak out scene…not enough facts here, maybe someone else has some feedback on how to cope/support…
“may your BMs be smooth,regular and formed” old vulcan saying.
written by Daniel