PSC for silvergriz

 This reply goes to Becomingundone: Thanks so much for all of your info. It helps to have a good GI, this is my 2nd GI Doctor I've seen in the last over 11/2years. And he knows my history and I've also told him about my itching, fatigue and nausea, and he doesn't seem too concerned. The last bloodwork I had done in his office last office, the bilirubin was normal and the alk-phos was 131 and then had a physical in Ocy of last year by my primary care doctor and the alk-pho had come down to 117. My primary care doctor said I should be more worried about my Crohns right now because of my fistulas and stricture that my liver should be the last of my worries. And my GI doctor told me and I had my husband go with me that day, the first of this month(Jan) and my husband asked him, if 10 was the best as far as liver function, how you rate my wifes' and he said a 9 simply because od the minially elevated alk-phos, and said that alot of people out there would like my liver. He is going mainly on my bloodwork and nothing else I guess. I know I feel tired all of the time, and nauseated all the time on-off, my GI doctor seems to think its more my Crohns than liver stuff. I just hope that Humira works for me and I can start feeling better, it's no fun when you feel lousy all of the time. And whatever liver issues I have, hopefully that will help too. Thanks again Becomingundone I sure appreciate all of your helpful advice!!! I kept trying to look for your response last time and I couldn't find it. But I'm glad I did!!! Take care of yourself too--Hugs--Silvergriz

I hate to butt in, but what is PSC?

 This reply goes out to becomingundone: I did have an x-ray down a fews ago noww by my fist GI doctor and that;s where I found out about my having an enlarged liver, I started going to this GI I think it was August of 2009 and then he did a MRI which he said they found no abnormalities. The nurse said I wasan't scheduled for any blooed work until Feb17th but if I wanted, I could see if Dr. Y wants to do it sooner. When I told him the beginning of the month, that I had been not feeling good all month, all he said was the thought it was more my Crohns than liver. I remember a couple of years ago I had an X-ray done on my gallbladder with my primary care doctor, and at that time it was okay, but that was quite awhile ago. I guess what gets me so frustrated, is that hes supposed to be specialist at least in Crohns, and I thought to myself, if you can't figure this out, my God whay don't you send me to someone that does!!! I think that next time when I go see him I'm going to ask him about doing a CT scan, he said my bloodwork did not show him enough reason to do a liver biopsy or any other procedure. You are so thankful you have a good GI that caught this PSC in time, that's for sure. I'm sorry I forgot, did you say your only taking stuff for your PSC and not your Crohns. Oh that's right I just remembered you said that you take stuff for your PSC and I think you said Cimiza. Do you have to take that my injection or is that by pill form, and does anything of your meds make you sick or anything? Sorry Becomingundone for all of the questions, but just being concerned about that drug Humira and worrying sbout my pre-existing liver conditions, and than my being outof work doesn't help and wonderiong if I'll ever be able to work again at times does take a toll. A friend of mine in Billings, Mt that has Crohns since she was 19 and is now my age 59(yeah, I'm really old-haha), said she's been on Humira and it has done wonders for her and ofcourse they check you every 3months.  But everybody deals with Crohns and everything else that may come along with it, is sure different that's for sure. I guess I also concern myself with the money aspect if something were to happen and my insurance and all of that. I'm hoping it will never come to that, but a person just never knows!! I sure have been doing alot of praying too!! Sorry again for all of my ramblings, it's kind of a relief getting some of this off of my chest and being able to talk to someone else that is going thru the same thing so to speak. Take care and keep me posted on how you've been feeling too. I like hearing from you. Hugs--Silvergriz

 This reply goes to Becomingundone. Thank you so much for all of your thoughts and advice on this matter. Now I'm not so scared about thr Humira and worrying about liver failure fromthis and all of this extra stuff. I don't know where you live, but it's too bad you don't live close-within 100miles or so, I'd personally drive up there and give you a big hug!! You don't know how much this means to me, in some ways I feel like the weight has been lifted off of my shoulders!!! I know my husband doesn't understand all of this, as he has said that I've had 2GI Doctors and my prinmary care doctor, telling me that my liver function is good that I should be worrying about more about my Crohns than my liver. I know that my Crohns has gotten worse as my GI doctor has said my Crohns is now in my illecocal valve(which I can never spell that word) and I think he also said that is also some ulceration in my large intestine. It's just getting old being nauseated all of time off and on and sometimes the itching drives me nuts. Do you ever itch at times and do you know of anything that would help? Who would think that I would ever have liver issues. I guess you don't have to drinkto have liver stuff going on that's for sure, and Crohns out of all the bowel diseases out there, Crohns is the worst of the worst. I sometimes tell myself that I don't deserve this and it's not fair, but I guess life sometimes is not fair and sometimes life throws us a curve ball. I told my self that if ever came down with liver disease, that I would try and fight this every step of the way!! I surely hope that you have a good support system, but I know for me, right now my support system is not there, I feel like I'm on this journey alone. But I do know that my husband said if something seriously happens to me, that he would be there. I really sometimes have my doubts, as he know that I've done really well in the past 10years controlling this disease, but my Crohns is now worse thsn before and have since then developed other issues as well. Thanks again so much, keep me posted on how you've been doing as well. I'm not trying to be nosy or anything, I'm just a caring person.--Silvergriz

Oh, and the thing about doctors...I thought this was a good article, so I'd thought I'd share it...
www.chronicbabe.com/articles/846/
I know Dr's, get a lot of grief, but I understand that they are only human...I was going to by a physician, but had to deny my med school acceptance, as that was when I was first dx with crohn's...honestly I thought what I had was worse than what they were saying(I really thought I was dying...sounds so dramatic, but that is what it felt like, and I didn't know, didn't know anyone with it, pooing blood all the time, puking my guts out, it was horrid)...it's probably for the best that I didn't as I would probably work myself to death and would have had a harder time stepping away from the work force if I'd gotten my MD...and wouldn't have met my dear wonderful husband (he's kinda what keeps me going, him and my parents)

I'm still a ways from transplant...my doctor caught it VERY early, and so we're trying to keep it as long as possible...you can't get listed anyways until you reach a certain point (MELD score had to be a certain level to even get on the list). I'm one of the few that is caught ahead of time, as many times when people find out they have it, they are in need of immediate transplant...

As for who is going to walk through the process for me, it will probably be my GI...not only is he good with IBD's, but tends to have a lot of liver patients too, and will then suggest a heptalogist and/or surgeon when the time comes, as he did with the enhanced ERCP (he referred me to a guy whose practices was mostly ERCP's), as they can be tricky(and has surgical training to do procedures if need, which I did, I had a strictureplasty, and a stent)

I don't know what to say about your GI, as you don't seem to have a lot of options...I live in the Phoenix Metro area, so I have a LOT to choose from, and I started here having a doctor who didn't take me seriously, and though he was on the CCFA website, he didn't seem to treat a lot of IBD patients (90% of his patients seemed over 80), and his therapies were outdated...so I don't know what to say...