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Posted 1/4/2011 2:08 AM (GMT 0)
To whoever might be reading this post: I've tried on several occasions to try and get some suggestions with no reply, and it was recommended to start a new post. So here goes-- I've been kinda stressed lately, as my Gastro-Doc wants to put me on the drug Humiria because he said surgery wasn't an option. I don't know if it;'s because of my 5-6 Fistulas and stricture and where they are located(which I think is mainly in my small bowel area) I also have pre-existing liver conditions, which I think I've had for about 3years or so. This is the 2nd Gastro-Doc I've went to in the last 10years since being diagonised with Crohns. My liver function I was told since last year has been within normal range, but it still concerns me whether or not it would be a good idea for me to take this drug. I certainly don't want to end up with liver failure with this. I guess my Gastro-Doc said they check the liver ensymes every 3months so see how your doing. If anybody reading this could offer any advice or is going thru the same issues as I, I would appreciate a reply back. I guess to because of my Fistulas, my Gastro-Doc says there is a 50-65% of it healing my Fistulas. He said I can choose to do nothing and end up with an infection or a bowel obstruction if I choose not to go on this drug. Thanks alot!!--Take care-- Silvergriz
Posted 1/4/2011 2:18 AM (GMT 0)

I have polycystic disease which involves my kidney and liver. Although I don't have fistulas my Gastro is considering Humiria because I am having issues with Imuran and infections. We are making the final decision on Jan 18. I am very interested to hear what he has to say.  Good luck.

Elizabethi

Posted 1/4/2011 5:01 AM (GMT 0)
I have liver disease, and none of my doctors have been hesitant to give me the biologics...I have to stay away from methotrexate...but as to the Remicade/Humira/Cimzia, no real problems, now it might be something different if you have a current infection (say Hep C), and then I can understand your hesitation, but if you have idiopathic or autoimmune liver issues, then usually this med isn't all that bad for you, but I'm not a doctor, and you really need to speak with one...I'm not sure how we can help or what you need...

So what was your pre-existing liver condition?

I know I've tried to answer some of your questions in the past...but I'm not sure how I can do so...
Posted 1/4/2011 10:12 AM (GMT 0)
hey silver griz, well maybe you need to talk to a colorectal surgeon instead of or in concert with your GI dr.. although it would be amess to try and get 5-6 fistulas taken care of at once, if they are in the same genral area of bowel it could be as easy as a larger resection and clean up and lots of follow up antibiotics. you may need to leave the incision open for a few weeks or months to get proper healing.. the best advice i can give is to find an experianced surgeon in this area.

as for Humira, and other biologics, its a crap shoot really, works for some but not all... i seriously doubt you will close up that many fistulas with any meds. at least in my experiance. always needed surgery to repair. good luck
Posted 1/4/2011 3:47 PM (GMT 0)
This is my experience with eight GI's over the last 5 1/2 years. They do not know what will work for that particular patient because this disease is so individual, so it is a trial and error process.
Now I would be more concerned about methotrexate with a liver issue, then I would about humira.
I would wonder about the state of your disease (how many times a day you are going/how do you feel?) and what other meds you have tried?
Posted 1/5/2011 2:20 AM (GMT 0)
blush  This reply goes to Irishmom4: Thanks so much for replying. Have been feeling kinda diwn lately, as I haven't felt up to par for about a month or so. I have a consult with my Gastro-Doc on Ja.13th to make a decision if I want to go on that drug Humiria. I'm just tired all of the time and I itch all of the time too. I know I will have some questions for him next week, and I told my hubby that he;s going to go to. This drug has serious side effects , and with the pre-existing liver conditions, I want to make sure that this drug would be appropriate for me to take, plus it's expensive!! The drug company was suppoed to send me paperwork to fill out along with my GastroDoc to fill out so I can get the drug for free. I had Hep1 when I was 5years old, and he said that goes away, not like the others. Keep me posted on how your feeling freom time to time too. Take care--Silvergriz
Posted 1/5/2011 2:42 AM (GMT 0)
wink  This reply goes to Becoming undone: Thank you so much for your reply!! Just in short-I had HepA when I was 5years old and both of my parents drank!! I don't drink or smoke, so now not only do I have Crohns, but pre-exisiting liver conditions as well. My 2nd Gastro Doc that I've been going to for almost 11/2years did an MRI last summer and found that the reason the ala-phosphtase was elevated was that is was coming from the liver. My first Gastro Doc never did an MRI and I always got the feeling that he never cared that much. I had a friend that suggested that I go see Dr. Y, that is a specialist in this disease, and that was the first thing I had done was the MRI. Before I went on my trip last year my alakine-phos was 152 and my 1st Doc said to go on my trip to Alaska come back and they would check it again. It was then I decided to go see my 2nd Gastro-Doc which I like, and has since come down from that. (138-131-in Oct.-117) and he says that's minimal. I do know that I'm always tired and I itch all of the time!! He said there is no reason to do a liver biopsy as it's minimal and no reason to go poking around there if we don't need to. As far as what type of liver disease I have, I don't know, and would probably know if they did in fact do a liver biopsy. But Dr. Y doesen't seem to be too concerned. And my liver function for last year anyway, has been within normal limits so that's good. I do know my First Gastro Doc I went to for 8years, had me on methotraxte, which I only took for a week, it made me so sick, and a steriod he wanted to put me on, and because of the side effects, I ended up not taking that either. I do have an appointment to see my Gastro-Doc next week, as I haven't been feeling up to par and I'm sure he'll probably do bloodwork again. I apologize for being such a pain, but Iam concerned. I do know if I can be of any help to anyone out there, they can sure contact me. I'm sorry, what type of liver disease do you have if I may ask, hopefully you've been able to keep it under control!! Take care and keep me posted--Silvergriz
Posted 1/5/2011 3:26 AM (GMT 0)
blush  This reply goes out to randynoguts: Thanks so much randy for your reply!! My 2nd Gastro Doc said surgery for me would not be an option because of the amount of fistulas I have(5-6) and a stricture in my small bowel along with a stricture., and he said there is a 50-65% of it healing the fistulas, of course there are alot of serious side effects. And with pre-existing liver conditions I'm not sure if that's the drug I want to be on. He said I could do nothing and take the chance of getting an infection or possibily another fistula which may end up in my urinary tract and that intself could create more problems. I've never had a liver biopsy, I guess my 2nd Gastro Doc said it's minimal and there is no reason as of yet to go poking around there when there really isn't any reason to. I do have an appt Jan.13th to see my Doc and will ask some more questions before I dewcide if that's what I want to do. I know I haven't been feeling up to par for the last month or so, really tired and I itch all of the time, so I;m sure he's probably going to do bloodwork again. As of Oct.2010, last year they were within the normal range so that was good, and if I decide to go on the drug, they would check them every 3months or so. I started having liver issues about 2007, when my primary care doc at that time, had the nurse call and say my bilirubin was elevated. I thought oh great!! He has since retired, so I went back to my Gastro0Doc and nothing was mentioned aobut that, except the alka-phosphtase was elevated. So since 2007 or so or from what I can remember, that's when the liver issues started. Even my 2nd Gastro-Doc said that is was minimal, and the liver function is good.I guess Crohns effects everybody different. I sometimes think, why me? Take care and hope you keep me posted from time to time--Silvergriz
Posted 1/5/2011 3:44 AM (GMT 0)
blush  This reply goes to mmmNavy: Thanks alot for replying to my message, it means alot that someone out there actually cares--I've been to about 3Gastro Docs over the course of 10years, One was for 8years, the 2nd one I just went to him once, and I didn't care for him and the 3rd one for almost 11/2years. I think this one actually cares and he is supposed to be a specialist in Crohns. The first Doc I saw and I can't remember when it was, but he did precscribe Methotraxate, which I took for about a week, and it made me sick, then he tried prescribing a steriod-Entecort, which I didn;t take either. After my trip last year to see my son in Ak, I decided to go see the 3rd GastroDoc last summer in August in which time he did an MRI and found out why the alk-phosphtase was elevated and found out that is was coming from the liver. He never usggested a liver biopsy as he said it was minimal and no reason to at this time, So from May last year it was 152 and when I went to see the other Gastro Doc it has been 138-131 and last Oct.,back down to 117. which he thinks is still minimal. I know that I'm tired all of the time and I itch all of the time, it drives me nuts!! I know for the last month I haven't been feeling up to par and I;m sure when I go back to my Doc he;ll probably do bloodwork on me again, to check the liver ensymes again. I do know since last summer they have stayed within the normal limits so that's good. I also do know that I had Hep A when I was 5years old and both of my parents drank real bad!! My Doc said that Hep A you get over, which I thought you always carried the anti-body in your system. He ssaid you get rid of it and the liver disease that your parents had, you can;t inherit. He told me that right now the only drug right now that he could sauggest to me would be Humiria, and there is a 50-65%chance of healing those fistulas, but it also comes with serious side effects as well. If I haven't been diagonised with any particular liver disease with biopsy, maybe I should put my fears aside and try it. Thanksagain for taking the time--Silvergriz
Posted 1/5/2011 6:59 AM (GMT 0)
Silvergirlz...I get an idea of what's going on...I think the docs may be still unsure of the exact causative factor in your illness...they will want to test you for all the heps based on your history before beginning biologics for you...just a note, I didn't need a liver biopsy to get diagnosed (I supposed they got one in the end with the ERCP)...but you start with ultrasounds, then to CT's, then to higher CT's and even an MRI (with all of these they can see if there are any issues such as growths or whatever)...then you go to and ERCP which is for all intents and purposes a surgical procedure, done under general anesthesia...it goes through your throat, they can look at the bile ducts that may be hard to see in other imaging techniques...

So you wanted to know about me (and I think I've said this before too)...I have PSC(Primary Sclerosing Colangitis)...it was dx'd with an enhanced ERCP at which time I had a stricturplasty and a stent placed in (my common bile duct was totally closed). I take 900miligrams of Ursodiol (which is not thought to help the illness, but to slow down related cancers, and just help the bile to flow better)...but due to my latest lab work I'm now on entocort 9mgs daily, primary to help with the liver issues, such as pain and itching that was driving me NUTS!!!!!!!!!! smhair I would wake up at all hours of the night scratching everywhere, no relief, palms of hands, soles of feet, my scalp, and my knees and shins of all places...I take benedryl to help with the itching (the only thing that seems to work along with the eneterocort)

Methotrexate is a big no-no with those with liver issues...but like I said, not a problem with the biologics(which includes Humira, Remicade, and Cimzia)...I too have fissures, and I think the biologics helped keep them manageable...meaning no surgery...but I still get them...I'm not a doctor, but just from personal experience, it might be a good idea...you may end up wondering why you hesitated so long once you start...
Posted 1/5/2011 6:50 PM (GMT 0)
blush  This reply goes to Becomingundone: Thanks so much again for your reply!! I do have an appt with my Gastro-Doc on the 13th of January for another consultation, as I haven't been feeling up to par, I've have been feeling a little bit better over the last couple of days, but it seems like I', always running to the bathroom. You told me that you were diagonised with PSC, if I may ask, when was that? And did your Doctor say what the stats are for longetivity with this and can you keep it undecontrol for a long time? I asked my Doc one being as that I know also have this disease as well, what are the chances of outliving my Dad, that passed at 68 and I'm only 59. I do know this drug Humiria is expensive too, and since I've been out of work since last June, I called the drug company to get an application to fill out so I could get some help. But as of yet, I've heard nothing, they were supposed to send one to my Doc as well. My Doc will probably do labs on me again and if everthing comes back within normal range as before, I may give this drug a try. I apologize for all of the concern and questions, but it is nice to be able to talk to others that are going thru the same thing as me. My Gastro-Doc has not suggested a biopsy or anything like so in one way thats good. I've had Crohns for about 10years I probably mentioned, and it's probably been since 2007 that I started developing liver issues as well. My regular Doc at the time retired, and I remember his nurse called me at work and said my bilirubin was elevated. And ofcourse I was worried, so I went to my 1st Gastro Doc that following March, and nothing was said about that, except my alk-phosphtase was a little elevated. So it been up to 152 and as low as 117. I decided in August of 2009, when I got back from trip, I was going to go see a specialist in Crohns and he is good, I just hope for my sake, that he cares enough. I guess the last liver function test they did from my primary Doc, was normal for the bilirubin and a little elevated for the other. Which he said for my having Crohns was normal. I hope everything is going okay for you as well. Hopefully you keep me posted and let me know how you are doing too!! Take care--Silvergriz
Posted 1/5/2011 11:15 PM (GMT 0)
This response goes out to Becomingundone: Sorry again for all of the questions, but how long have you had Crohns and how long have had your liver disease as well? It was suggested to me to go see a liver specialist, I may have to, but I think I'll also ask my Gastro-Doc as well to be sure. Thanks again for your input. Take care--Silvergriz
Posted 1/6/2011 2:02 AM (GMT 0)
I've had was dx'd with crohn's in 1998, but I think I've had issues all my life...PSC was dx'd in October 2009...

With PSC, the outlook isn't that great...I WILL need a transplant at some point if I want to survive...there is not a lot info/research on this disease, as it is relatively rare, but all available stats (from the Liver Foundation and other sources) is that 80-90% or patients will require transplant within 10 years of dx...

My GI is the one who suspected PSC, but the test was performed by a specialist who only does ERCP's and liver procedures...it may be that my doctor is just really good...oh, his wife worked with liver transplant medicine, so that might have given him more insight too...

You may have to see a liver specialist or maybe a GI who is good at Crohn's and its complications...

What imaging procedures have you had done? I ask because this is where you should start...oh, another issue with autoimmune hepatitis is that tests can be irregular/transitory...some times they show up normal, other times they are out of whack...
Posted 1/6/2011 5:25 AM (GMT 0)
wink  This reply goes out to Becomingundone: Many Thanks again for your quick response!! You know, I thought I was seeing a specialist for my Crohns and I assumed he was also a liver specialist too. I thought if he was concerned in anyway, that #1, he would have sent me to a liver specialisr, or #2, ordered up a liver biopsy or whatever else that they do. The only imaging tests that I've had done was a MRI, done August09, and the reason he did thi test he said was to find out whey the alka-phosphtase was elevated, and he found out it was coming from the liver. He said my bilirubin was normal and has been normal since I started seeing him about 11/2years now. Like I mentioned before, I had HepA when I was 5years old, and was told that it goes away, also a few years back my 1st Gastro Doc ordered up an X-ray and later found out that I had an enlarged liver. I know at that time, I was really worried and he looked at the X-rays and said the liver there was nothing abonormal, just the way that it was shaped. I feel I wasted 8years of my life with that Doctor. So I'm hoping that this current one, will not lead me astray so to speak.I've told him about my itching, redpalms, and he didn't seem too concerned. I guess he's going by the results of my bloodwork. I remember going to my primary care Dr, because I've been feeling kinda nauseated off and on for about 3weeks and extremely tired, and he said he couldn't tell me why I was nauseated, but because I was also bleeding, he probably thinking it's my Crohns. So now I go back to my GI Doc next week for a consultation and after doing some serious thinking, I may not go on that drug, Humiria, (so many serious side effects!!) I do know they test you for TB before giving you that drug, but I'm thinking besides the bloodwork, I'm going to ask if there is another test they can give me to find out what kind/type I have. I know for the past 11/2years, this GI Doctor has never suggested anything like that. I remember I think it was in 2008, when I was working, my 1st GI Doc did a bloodtest to test for biliary cirrhosis, and at that time was negative-Now all that's being done is a liver ensyme test they have been doing every 6months. Just curious, do you take any Vitamins or Supplements? I suppose you have to watch everything that you take as most of the stuff you take get processed though the liver. I've been taking Probotics for a long time now and I also take a liquid Calcium, but thats all I'm taking right now for Supplements. P.S. Are you able to still work? I got laid off from my job last June2010, and had some medical stuff come up-2scopes, Barrium enema, mammogram, and now wondering sbout this drug stuff. I'm hoping I'll be able to go back into the work force and have to go on disability. I was hoping to work until I am 65 and I'm 59years old now. All I can do is hope for the best. Take care and keep posted on how you have been doing as well--Hugs--Silvergriz
Posted 1/6/2011 6:06 AM (GMT 0)
Alas, I haven't been able to work for 2-4 years...not due to liver complications but the the crohn's disease...

You seem to have a lot of questions...maybe for a doctor try and list the questions down and give them to her/him at your next appointment...pretty much those questions you have asked...

A good idea anyway, list your symptoms, when do the occur and for how long...but make it with bullet points, long paragraphs that ramble on are harder to understand...

So from what I'm understanding, on films, your liver isn't enlarged? I didn't really know there was a blood test for PBC, but this might help:
www.medicinenet.com/primary_biliary_cirrhosis/article.htm
good luck...
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