has anyone with PSC and moderate to severe ulcerative colitis had chest pains?
My son is 28 and has had PSC for 8 years- and ulcerative colitis for a year- he has been having chest pains over his left chest front only- not the right and it comes off and on but they get so bad he can't move and has trouble breathing deep due to the pain - they first said it was his chest wall was inflammed but ruled that out- then they said maybe he has pleurisy but that was ruled out too- then they said maybe a blood clot was lodged in his lung but the cat scan ruled that out----the only thing that helps is a heating pad- the norcal pils for pain only makes him tired/sleepy and gives him major diahrea but doesnt really take away the pain- Has no nausea either or headache. No other symptons- Can PSC travel to the lungs?? Please anyone out there have any lung issues?
I went the the ER two times in a week period due to severe lower left chest pain. Now while I must say that I can only offer my own experience and that I am no doctor. But it is worth a look. I was given norco's, and a pee test and sent on my way. It was determined after a colonoscopy that I had 2 ulcers that when on a empty stomach would cause severe pain. SO bad that I couldnt move.
I went the the ER two times in a week period due to severe lower left chest pain. Now while I must say that I can only offer my own experience and that I am no doctor. But it is worth a look. I was given norco's, and a pee test and sent on my way. It was determined after a colonoscopy that I had 2 ulcers that when on a empty stomach would cause severe pain. SO bad that I couldnt move.
oh awful -- but his stomach is ok it's over his heart area and to the left under his arm pit- but wouldnt the cat scan with contrast show the ulcer if it were this? And I had one and it was more of a burning pain this is more sharp intense but I guess it still could be- I will definitely ask his GI doc at the appt tomorrow! Thanks for the thought!
I had 2 and one of them was a burning pain, the other one feels like someone is sticking a knife into my lower chest area. But you are right if it is something that high in the chest area it is probably something else. I just like to offer what happened to me. Offer more insight.
Hi again Nick. Sorry to hear that you are having a difficult time at present. One question I would ask you. Are you under the care of a hepatologist through a hospital that does liver transplants or are you just being treated by a GI or primary care doctor? If the latter two, I would strongly encourage you to get under the care of a hepatologist as soon as possible. Not sure about whether PSC can travel to the lungs. I don't think so. It pretty much is concentrated in the bile ducts and liver itself. Do you know what your current MELD score is? Here's a link to check your MELD if you are not sure. http://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
It's good to see you back on the group again. Please keep in touch and let us know how you are doing. I hope you can solve this latest issue you are having soon.
I am being treated by a pediatric GI doctor (Dr.Davies, works with Dr.Cox at stanford). And Mark I simply replied to this discussion, I do not have the pain in my upper chest, my ulcers are being treated currently. I will work on finding out my MELD score.
fcmmark said:
Hi again Nick. Sorry to hear that you are having a difficult time at present. One question I would ask you. Are you under the care of a hepatologist through a hospital that does liver transplants or are you just being treated by a GI or primary care doctor? If the latter two, I would strongly encourage you to get under the care of a hepatologist as soon as possible. Not sure about whether PSC can travel to the lungs. I don't think so. It pretty much is concentrated in the bile ducts and liver itself. Do you know what your current MELD score is? Here's a link to check your MELD if you are not sure. http://optn.transplant.hrsa.gov/resources/allocation-calculators/me...
It's good to see you back on the group again. Please keep in touch and let us know how you are doing. I hope you can solve this latest issue you are having soon.
I would seriously ask your doctor about referring you to a hepatologist. He may be an excellent GI doctor and doing a wonderful job to help you all he can, but most GI doctors are not advanced enough to adequately treat PSC. This is a specialized rare disease that needs specialized care. Regarding getting a referral, I will say also that I have read in some of the forums I participate in that there are GI doctors out there that refuse to refer their patients to a hepatologist. If that happens just go to a liver transplant clinic and ask for an appointment with one. I don't wish to over alarm you but this disease will progress and things will get worse. The disease generally runs slow in the early years, but you really need be having labs done at least every 6 months and then as your disease progresses those will increase closer and closer. I know in the months leading up to my transplant my blood work was being done weekly. If there's anything more we can do to assist you please don't hesitate to ask. We are here to help in any way we can. I hope you continue to have good health and that this condition will move very slow for you. Keep in touch.
Mom - Cirrhosis from PSC can cause an enlarged spleen which can cause pain in that area. Have the doctors checked for this?
Mark - very good advice but this is the exception to the rule. Dr. Davies' specialty is PSC and she has more published research on the subject than all but a handful of doctors. Nick is in very good hands.