Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Help-newly diagnosed with crohns now primary sclerosing choleangitis??

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
nikki0294
Regular Member
Joined : Sep 2007
Posts : 219
Posted 9/29/2007 11:53 AM (GMT -8)
Hi all

I want to thank you all so much for helping me the last 4 weeks.  Thursday I went for a cat enterography at Mt. Sinai the gi doc just called and said my ti looks good not as inflamed as 4 weeks ago but now he said my bile ducts to the liver are inflamed and he needs to have Dr. Sejpal do a endoscopy of the bile duct.  I am freaking out...having a hard time handling the crohns diagnosis now this. Does anyone have this primary sclerosing choleangitis thing?  Can you tell me is it dangerous and how they treat it also are there any other tests to show how extensive the inflammation is or do I have to have this ERCP?  Thanks again...I can't take all of this.

Chris

profile picture
itsme512002
New Member
Joined : Sep 2007
Posts : 2
Posted 9/29/2007 12:32 PM (GMT -8)
I have both diseases PSC and Crohns, actually the ERCP is from what I understand the "gold standard" of tests for PSC.  I was diagnosed in 2002, yes I was scared but I have learned to try not to dwell on it.  I have had 2 liver biopsies, that is also another test they can do to see how extensive it is, if indeed you have it.   I think that there is a new test an MRCP (less invasive) that they can do, maybe you can ask your Dr. about that one.  I have only had the ERCP, I'm not sure that I can have the MRCP because I have a vena cava filter (for blood clots).
profile picture
nikki0294
Regular Member
Joined : Sep 2007
Posts : 219
Posted 9/29/2007 7:05 PM (GMT -8)
Thanks itsme...did they put you on medicine for this? What do they say for the future for people like us. I read about the liver transplant. Do you go on a transplant registry right away?

Thanks
Chris
profile picture
itsme512002
New Member
Joined : Sep 2007
Posts : 2
Posted 9/29/2007 8:03 PM (GMT -8)
Chris, I went on Urso for several months it is very expensive, my Doctor finally said that it hasn't been proven to be effective in PSC just in PBC so he took me off of it.  I am currently in a study from Mayo Clinic so hopefully that medicine will prove to help.  Right now there really isn't any treatment besides the eventual liver transplant, at least that I know of.  I belong to another board that is for PSC, there are people on there that have had it for 20 years without transplant.  The doctors go by your "Meld score" which I believe is described on Mayo's site, when it reaches a  certain number they will begin to get you listed.  I am at a stage 2 to 3 (of 4) right now and I am not being listed at this point.  I was very scared when I was originally diagnosed because my doctor while looking at my liver biopsy results said "hmmm they say you have PSC, there's no cure for that, just a liver transplant for end stage".  Well, I left his office went home and researced it and saw that Walter Payton had it and died shortly after, OMG scared me half to death, but then I have heard that most people live for quite some time without to many problems. And like I said I have had it now for 5 years and I actually have had more trouble with crohns then PSC.  Strangely in some ways it has been a bit of a blessing to be diagnosed with both diseases because I no longer take life for granted, I am very thankful for each day, week, year that passes and I'm able to enjoy all of my family and friends it was certainly a wake call to stop stressing the small stuff.

profile picture
nikki0294
Regular Member
Joined : Sep 2007
Posts : 219
Posted 9/30/2007 2:36 AM (GMT -8)
Is there a specialist at Mayo that studies PSC that I can get on a wait list to see. I am in denial since it is predominatly a male disease. We went through 4 years of leukemia with my daughter who needed a transplant and we couldn't find a donor. Spent over $400,000 of our money and donations and searched all over the world. I am Norwegian and my hubby is Italian come to find out I have a very small amount of Shetland Eskimo in me making impossible to find a suitable match for her. I oculdn't find a liver donor to match me ever. Can you also tell me about the PSC board. Thanks so much. I can't believe this is happening
Chris
✚ New Topic ✚ Reply


More On Crohns Disease

Living With An Ostomy

Living With An Ostomy

Learning to Live With Crohn's Disease

Learning to Live With Crohn's Disease


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2023 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.