new member

Hi - Glad I found this forum! It really helps to break the isolation.

I was diagnosed with Crohn's/Colitis in 1988 after food poisoning in 1986, (they were never sure what I had and still argue this one). I had an ileoanal pouch procedure in 1988 which worked like a charm for 20 years except for the odd infection and cramping/flare up (pouchitis) which was treated primarily with antibiotics - cipro.

I have had 2 kids and a successful career in a high stress area. This past year though was a night mare. It started with anemia, then 3 partial blockages (at the same time) - and after scopes in every orface they could find - they discovered I was bleeding through esophageal varisis caused by liver disease. This is a rare condition that is connected somehow to Crohn's (lucky me). I don't have any of the other usual suspects as I have never had Hep A,B or C, and rarely drink alcohol etc. Heck - I drink green tea! This hit me from left field and I am on a steep learning curve to find out all about liver disease. I have had 5 blood transfusions in 3 months (16 units of blood in total). They know my name in Emerge! Anyone else dealing with this double whammy?

The liver issues probably brought on the blockages and I was rushed through the process to start on Remicade in May to avoid surgery (due to possible transplant, surgery is last option). This has worked - but now I am having the delayed allergic reaction of joint pain etc. Even my ribs are inflamed and it hurts to breathe! Remicade is very hard on the liver as well - something for people to keep in mind.

I am also being screened for a liver transplant now. I would like to hold off for a couple of years until my youngest is out of high school (single mom here).

I have lost my job now and am about to do battle for sick benefits - sheesh! Even though this all sounds pretty crappy, I am hopeful and positive by nature and am constantly learning through all of this - could use a few less of these little growing experiences though.

All the best for 2010 - let's all be miracles!

I am so glad you found us here..i cammot answer your questions about liver either sorry but as was already said i am sure there will be some members that are able..stay with us..you have a great attitude imho..lyn

Welcome W C Lady

Hi and Welcome!!!!!

BAR 77/Becoming undone

Hi - I am truly sorry to hear that you also have liver issues... Yes - time to buy a lottery ticket to balance this off! My primary diagnosis is also PSC. My symptoms started with the liver enzymes being off which no-one seemed to be very alarmed about - and then anemia which seemed to get worse no matter what was tried. I had iron shots (useless and left a huge stain that lasted a year!), a blood transfusion and even vena-fir (an IV infusion of iron over 6 doses - best option). I was obviously loosing blood somewhere. It was not until with all the other blockages that my GI did an upper GI scope into the esophagus and stomach etc. and found the esophageal varices - which are inflated veins due to back pressure from the liver and a sign of advanced liver disease.

I had an MRI, ultrasound, CT scan and biopsy which also showed cirrhosis. So there are tests that can be done in addition to the biopsy. (I am in Canada and got the tests fast as an in-patient).

One of my problems now is that what is good got the liver - is not good for the crohn's/colitis and vise-versa. For example - white sugar puts less stress on the liver but not a happy food for the digestive tract. Also - the liver needs more protein when it is distressed etc... I am researching amino acids that have anti-inflammatory effects and will support the liver. I have just ordered Superior amino 2222 Liquid and am adding L-glutanamine.

I can't take anything that will this the blood as it can get the bleeding going and take vitamin B12 and K to support blood platelets (K is manufactured in the intestinal tract and many IBD folks are short on it).

Hope all this helps! Sorry if TMI... just getting the hang of this

WC lady...wow! I was surprised that they caught yours so late. Just curious, what is your current treatment for this? I'm on 300 mg Ursodiol 3x/day.

Me...I kept having pain...a discomfort type of feeling where the margins of my liver were...I guess it was enlarging and pushing...this probably being the pain I was experiencing...had a couple of CTs and an MRI with enlarged liver and received final dx via ERCP...they had to cut my common bile duct as it didn't want to open and was a bit blocked, but absolutely NO stones...but till then my LFT were up and down...one day normal and next day through the roof...but I heard that was common in PSC...

I'm excited to talk to someone with PSC...haven't met many...not sure what comes next, what is normal...I guess I get a lot from this website, but I haven't found too many with the PSC, and it is a new thing for me too (just dx'd in October)...I've looked into the hepatitis part of this site...

It's always comforting to know you are not alone...