Do All Heps Have BA (Bad Attitudes)?

[Guest guest]

Hello to everyone in the group, I hope that you all had a wonderful

day yesterday.

I just don't how to start off this rant other than to say that I

think that my hepatologist is just plain crazy. After not seeing him

for 6 months, I had to ask to see him instead of his fellows that he

sends in to see me at every visit. I have told him at numerous

visits that I am in the small population of PSCers who suffer from

relentless back pain whenever I take Urso no matter what the dose (I

was tortured with 2000 mg daily until I just could no longer tolerate

the lower back pain - the hep decided that 1000 mg per day might

suffice). He proceeds to look at me with this wet puppy look as

though he had never heard of this as being a side effect. I proudly

presented him with documented information from the National

Institutes of Health concerning some of the more unusual side effects

that some people have when taking this drug; I still don't think that

it registered.

Am I the only person with a problem hep? I have been through H***

and back in the past 12 years and this guy seems not to have a bone

of compassion in his body. I have a major problem with my stoma

(ever increasing hardness/fluid build-up of the peristomal skin) and

when I pointed this out to the hep he says " I guess that I need to

refer you to one of my partners, I don't know everything " . At that

point, I was ready to leave the office through the window and not the

door.

I am so sorry to go on like this but I am about to lose my mind.

There is only one other major liver program here in the Houston area

and I am not sure if transferring to this other liver program will

help.

Thanks to all for listening.

Deb

UC 1994, Gallbladder surgery '04, PSC '05, Colectomy w/perm ileo '05

[Guest guest]

DEB I would find a new hepatologist yours sounds useless... and you need a Dr that cares and will listen. I'm luck i have 3 great Dr's. My hepatplogist always makes time to see me.. and does what ever test i need done..Theres times i go in there and say please dont think I'm crazy..He say I sure you know more about PSC than most DR....DEB we have a weird disease and it can effect everybody alittle different...and you better find a Dr that whats to help you. I have never had any problem with URSO but it doesn't mean you don't Jeanne outofpayroll06 wrote: Hello to everyone in the group, I hope that you all had a wonderful day yesterday.I just don't how to start off this rant other than to say that I think that my hepatologist is just plain crazy. After not seeing him for 6 months, I had to ask to see him instead of his fellows that he sends in to see me at every visit. I have told him at numerous visits that I am in the small population of PSCers who suffer from relentless back pain whenever I take Urso no matter what the dose (I was tortured with 2000 mg daily until I just could no longer tolerate the lower back pain - the hep decided that 1000 mg per day might suffice). He proceeds to look at me with this wet puppy look as though he had never heard

of this as being a side effect. I proudly presented him with documented information from the National Institutes of Health concerning some of the more unusual side effects that some people have when taking this drug; I still don't think that it registered.Am I the only person with a problem hep? I have been through H*** and back in the past 12 years and this guy seems not to have a bone of compassion in his body. I have a major problem with my stoma (ever increasing hardness/fluid build-up of the peristomal skin) and when I pointed this out to the hep he says "I guess that I need to refer you to one of my partners, I don't know everything". At that point, I was ready to leave the office through the window and not the door.I am so sorry to go on like this but I am about to lose my mind. There is only one other major liver program here in the Houston area and I am not sure if transferring to this other liver

program will help. Thanks to all for listening.DebUC 1994, Gallbladder surgery '04, PSC '05, Colectomy w/perm ileo '05

[Guest guest]

Definitely start looking for someone else to manage your care. You are in this for the long haul and if you get sicker this guy is not going to get smarter or more compassionate. Been there. Martioutofpayroll06 wrote: Hello to everyone in the group, I hope that you all had a wonderful day yesterday.I just don't how to start off this rant other than to say that I think that my hepatologist is just plain crazy. After not seeing him for 6 months, I had to ask to

see him instead of his fellows that he sends in to see me at every visit. I have told him at numerous visits that I am in the small population of PSCers who suffer from relentless back pain whenever I take Urso no matter what the dose (I was tortured with 2000 mg daily until I just could no longer tolerate the lower back pain - the hep decided that 1000 mg per day might suffice). He proceeds to look at me with this wet puppy look as though he had never heard of this as being a side effect. I proudly presented him with documented information from the National Institutes of Health concerning some of the more unusual side effects that some people have when taking this drug; I still don't think that it registered.Am I the only person with a problem hep? I have been through H*** and back in the past 12 years and this guy seems not to have a bone of compassion in his body. I have a major problem with my stoma (ever

increasing hardness/fluid build-up of the peristomal skin) and when I pointed this out to the hep he says "I guess that I need to refer you to one of my partners, I don't know everything". At that point, I was ready to leave the office through the window and not the door.I am so sorry to go on like this but I am about to lose my mind. There is only one other major liver program here in the Houston area and I am not sure if transferring to this other liver program will help. Thanks to all for listening.DebUC 1994, Gallbladder surgery '04, PSC '05, Colectomy w/perm ileo '05

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