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West Coast Lady
New Member

Date Joined Jan 2010
Total Posts : 7
   Posted 1/5/2010 2:41 AM (GMT -7)   
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!

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 1/5/2010 5:04 AM (GMT -7)   
Oh MY! I can't I have had any liver problems (knock on wood) But I would like to say that I'm sorry that your going through this with a great attitude.
I'm sure someone will come along and be able to answer your questions.
Oh and welcome to the forums.
Good luck and i wish you a healthy 2010
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 1/5/2010 6:45 AM (GMT -7)   
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 have a great attitude imho..lyn
                                Co Mod for Crohns, Anxiety/Panic, Alzheimers
   Crohns..Pyoderma gangrenosum,..Anxiety / panic..Fibromyalgia,,Neuropathy...Deaf...Seizures
                        I DONT COMPLAIN...OTHERS ARE WORSE OFF THAN I AM                                   
                             No BETTER GIFT than FRIENDS N FAMILY                                               
                            Happy Holidays from my home to yours

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 1/5/2010 7:52 AM (GMT -7)   
Hi West Coast lady and welcome to the best Crohns forum out there from another lady from the west coast. So sorry to hear of all you have been going thru. I will definetly keep you in my prayers that they can treat your Crohns and get your liver fixed up too.

Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Dec 2009
Total Posts : 681
   Posted 1/5/2010 3:06 PM (GMT -7)   
Welcome W C Lady
Male with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003.Had a gall bladder removed Nov. of 2009. Currently on 5-asa Salofalk ,Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. Entecort, Imuran and Prednisone in the past.

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 1/5/2010 3:25 PM (GMT -7)   
I'm so glad you found HW...this place is wonderful for support and answers!

Besides the obstructions, did you have symptoms of liver disease? I have elevated liver enzymes and my doctor thinks it is a fatty liver, but can't do a liver biopsy until I'm off blood thinners. I fear that I have a liver disease, and won't know until 4 months from now, when I'm off blood thinners and have the biopsy done.

I've had so many partial obstructions in the past so I understand that aspect of what you've been dealing with. Humira has kept me from having one in over 2 years!!! Hopefully Remicade will help you similarly.

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 1/5/2010 3:38 PM (GMT -7)   
Hi and Welcome!!!!!
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on and Humira. B-12 injection once a month.
Also diagnosed with Rheumatoid Arthritis.

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 1/5/2010 10:27 PM (GMT -7)   
Welcome WC lady...I have liver issues too...I had better odds winning the lottery, but nah I just got PSC instead...and I'm female too (dudes usually get the PSC) So we should talk sometimes...but until then HELLO....nice to have you here...
"The earth laughs in flowers"

West Coast Lady
New Member

Date Joined Jan 2010
Total Posts : 7
   Posted 1/6/2010 9:04 PM (GMT -7)   
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

West Coast Lady
New Member

Date Joined Jan 2010
Total Posts : 7
   Posted 1/6/2010 9:36 PM (GMT -7)   
I also want to thanks everyone for the warm welcome and advice - like not adding to old threads... oops!

I have been reading through the entries and am so impressed by the warmth, support and wealth of info! I am really glad I found this!


Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 1/6/2010 10:56 PM (GMT -7)   
WC! 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 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...
"The earth laughs in flowers"

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