My results from my biopsy

I went to get my biopsy results on 12/10/13. Needless to say my doctor said "I was in a gray area" on exactly diagnosing me. But did give me a general thought.

*Exact wording on my paper*

Based on your blood tests and liver biopsy, it appears you have an inflammation of the liver. At this time it is still too early for us to determine the cause for it and give you a specific diagnosis for the inflammation in your liver. It does appear to be secondary to autoimmune hepatitis or possibly a combination with primary sclerosing cholangitis (PSC) or primary biliary cirrhosis (PBC).

We are re-assured that the itching is well-controlled. We think it unlikely that the abdominal pain is liver-related at this time. We do recommend monitoring for any yellowing of the skin or eyes, acute worsening of the pain, in which you should go to the emergency room and the liver tests drawn.

Here is my question though...has anyone had the same response from any doctor that is similar to mine? The pain never leaves my stomach and comes and goes with intensity some times. I do know I have a pretty high pain tolerance. But for them to tell me right out that they are not sure yet and the pain is "not liver related" kind of frustrates me.

I still have to take my rifampin and my powder (yuck...lol). I was hoping that I did not have to...but if they are unsure. I just don't know.

Katsy,

I am sorry that you are experiencing pain and the doctors are unsure of your diagnosis. This is very frustrating.

I was diagnosed with PSC in 1993 after having my gall bladder removed. They found misshapen hepatic ducts. At the time, my initial gastroenterologist didn’t know what I had (she thought it was cancer because of increased density found in a CAT scan) so she got me a referral to a liver specialist who made the diagnosis. At the time I asked the doctor what I should do about the abdominal pain, he said, “Grin and bear it.” I thought that was an exceedingly callous and not helpful. Unfortunately, doctors may not know what to do in these situations.

Five years later, I had a blocked common bile duct. At that time I experienced severe pain, headaches, and low grade fever. They opened the duct and put in a temporary stent. However, as time went by the pain/discomfort continued.

Where is your pain? Is it your stomach or do you mean your abdomen generally or by your liver? My pain is below my lowest rib near my liver. It comes and goes; I still am able to exercise and carry out regular life activities.

I have talked to my doctor about this discomfort. However, I also have Crohn’s Disease (first diagnosed at Ulcerative Colitis, but now they aren’t sure I have either.) My doctor doesn’t know if the pain is from Crohn’s or PSC. Also, he said they don’t know the effect of intrahepatic deterioration on discomfort and pain.

You might want to keep a journal of your pain---where is it, when does it happen, is it after eating or medication, what foods are you eating, does it impair your functioning, what helps relieve it, etc. This might help you decide what to do to help yourself. For example, if a certain food gives you pain, then obviously stop eating it. Take your journal with you to your doctors and share your information.

Are you seeing a specialist---gastroenterologist and hepatologist--who knows about liver diseases? If not, you may want to get a second opinion? Even if you are seeing a specialist, you could seek a second opinion. It is important to get the correct diagnosis to get the right treatment for your illness.

Take your list of questions to the doctor and write down the answers. Take a second person with you to help write down the answers. Sometimes I get home and can’t remember clearly what the doctor said, and then I am very frustrated. Does your doctor have a Physician’s Assistant or Nurse Practitioner that you can spend more time with?

Unfortunately, because of liver disease we can’t take NSAIDs---Aleve, Advil, Ibuprofen, etc. Once an Orthopedist had me take Aleve. It was wonderful not to experience any pain from my liver and the arthritis in my joints. But then, I developed pain at my liver “big time.” I should have never been on the medication. My liver doctor has suggested Tylenol, but that has problems too for the liver.

I find that I have to wear loose clothing. Anything tight at my waist aggravates my discomfort. I also have to remind myself to sit up straight. For example, when driving, my car seat bends me forward causing me to recognize that I have discomfort. I have to keep my weight regulated, because any gain tends to worsen my discomfort.

I find that patience is required in living with PSC. I have found that as time passed, I became less aware of my discomfort. This is not to suggest that you should do this because I don’t know what level of pain you are experiencing.

I suggest you continue participating in this and other forums. If you are in a city, are there any local in-person liver-related support groups you could attend? Also, keep reading as much as you can.

Hang in there.

Biopsy is not the best way to diagnose PSC, you should really have an MRCP or ERCP done to help diagnose. I have PSC and Autoimmune hepatitis and have constant abdominal pain and nausea. I would push to see a Hepatologist and have these test done.

I have had a numerous amount of tests done before the biopsy. I did have an ERCP along with various blood tests. They removed my gall bladder after I went in to the ER saying I felt sick and told them I had a CT scan done. They actually though last year I may have had a problem with my liver, but never really elaborated on it because they found gastritis first. I have had soo many scans done I don't remember all they did. I am just hanging day by day. Thank you all for the advice. I appreciate it. :) *hugs around*

Praying that you get some answers soon. I know that it is very aggravating, but hang in there,

Contrary to what others have said, a biopsy is t

he definitive test.

It's possible that your biopsy is not being read by someone with experience diagnosing PSC?

I too suspect your abdominal pain is likely not directly PSC related.

Best of luck and I hope you feel better...

Hey Stephen :)

As for your question. No, I did not get a definite diagnosis. I am just frustrated with it. I guess I am just going to have to wing it for the mean time. I am going to see my family doctor by the end of this month. Let's see what he has to say...*rolls eyes*

But anyways, as for your other question: I am doing ok. I have my bad days of pain, a bit of itching and just tired and good days, where I am a bit better. How are you doing?