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Ulcerative Colitis
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Posted 2/27/2023 5:33 AM (GMT 0)
Hi everyone, it’s been years since I’ve posted here… so much has happened and I will eventually get caught up with everyone. Just wanted to share that my Ulcerative Colitis is in remission but now I’ve been diagnosed with a liver disease called PSC. Quincy if you’re still here I believe you have this too. I’m hoping to hear that you’re doing well. I was just diagnosed last week.
Posted 2/27/2023 2:14 PM (GMT 0)
Hey Susie,

It’s been awhile. Sorry that you’re checking in with a new diagnosis. PSC is usually a very slow moving disease. My blood tests sometimes throw off some weird liver numbers and my GI has been keeping a closer eye on my liver and adding more and more blood tests - 8 vials of blood a few weeks ago.
Posted 2/28/2023 4:45 PM (GMT 0)
Hi, Susie! I remember your posts last year RE dental treatment antibiotics causing UC flare after a long remission-- SO I'm glad to read that you got that problem resolved. about your PSC issue-- for sure Quincy will advise you as soon as she sees your post. Wishing you all my best in the meantime. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 2/28/2023 11:35 PM (GMT 0)
Hey Guys!!! It's so nice to "see" youre still around and kicking! And I totally forgot I posted about that oral surgery I had... OMG that was my worst flare EVER, even when I was first diagnosed! I switched to a whole food plant based diet just over a year ago and it took all the inflammation out of my body! My arthritis is gone, UC in remission, NO aches and pains besides this dang liver thing... but today has actually been a really good day. I just got diagnosed almost 2 weeks ago with that. But, back to the diet, I also lost almost 70 pounds! I am happy living in Texas now, married to an awesome guy now for 10 years, living on a ranch and have 6 dogs, 2 cats and 13 pygmy goats LOL.. no more horses for me it's too dang hot to ride here in the summer :P
I'll keep checking back to look for Quincy, I hope all the other compadres I used to chat with a lot are doing well... :D
Posted 3/1/2023 7:02 AM (GMT 0)
Hey Wilma!!! Good to hear you're doing quite well.

It was suspect that I had PSC for many many years because of my elevated enzymes and UC. I refused any invasive tests unless I turned yellow, lol, but it was agreed that I should start URSOdiol anyway. An MRI for the liver/biliary system (MRCP) was developed, and I had that at around the 10 year mark. It was unconfirmed, however, the AMA blood test was positive (autoimmune + Primary Biliary Cholangitis) and the specialist docs (GI/Hepatologist consult) then leaned to PBC instead. I won't have invasive tests, but my now Hepatologist took me off the URSOdiol to test if liver enzymes shot up. Oh yes they did...Confirmed PBC. I get an MRCP every 5 years and will be on URSO indefinitely. It was a good move for my GI and consult to have me on URSO immediately.

What are the tests that determined PSC for you, or is your doc just suspecting that because you have UC? One blood test I'm hoping you had is AMA...that would lead to autoimmune and PBC...and you should refuse the invasive tests before you have an MRCP. Are you seeing a hepatologist?

Hope this helps,
q
Posted 3/2/2023 2:43 PM (GMT 0)
Hey Susie,
It's been years since I've posted as well! I was trying to find some information on my past symptoms/lab results that I knew I posted on here about, looked myself up and then ended up clicking around to see what was going on in the HW UC world. Glad to see some familiar "faces", and in remission too!! Just wanted to comment and say hey smile

Edie
Posted 3/3/2023 10:35 PM (GMT 0)
Hey Quincy!!

I had an MRCP back in August and originally the radiologist said everything looked normal, then I went and saw a liver specialist in Houston and he had the facility re check the images looking specifically for PSC. They did an addendum report saying I showed mild beading in my intrahepatic and extrahepatic biliary system, which can be seen with PSC. He recommended an ERCP to confirm. I did not have this done, as the end result wouldn’t matter as there’s no treatment or cure for PSC. I have not had the AMA test as of yet. I’m not sure where to go from here. The liver doctor I went to just wants to monitor me, getting blood work done every 6 months and an MRCP every year. I am not staged at all, no liver biopsy planned.. just waiting to see if I get worse or not… kind of disheartening.. Other than THAT though, I’m doing great! Living in Texas and happily married now for 10 years!
Editing to add that they started me on URSO as well, but an extremely low dose of 250mg 1x a day. No real noticeable difference so far.. still have off and on RUQ pain but mostly my appetite is good.

And hi Edie!!!! I hope you are doing well also!! I’m currently at the ER with my mother in law waiting to see if she has diverticulitis or something else. Thought I’d drop in and post while we wait for hours for the doctor to come back in hahaha

Post Edited (Susiebuddy) : 3/3/2023 2:38:01 PM (GMT-8)

Posted 3/4/2023 5:47 PM (GMT 0)
Hi Susie...seems pretty much confirmed with the beading as being PSC. I would still see if you were AMA blood tested for PBC anyway. I'm sad to hear of the diagnosis.
The URSO dosage is usually based on weight. Re ERCP...my own decision would be to have it done unless an ultrasound showed a blockage...but not for confirmation, as it has been a fishing expedition for others until the correct area has been hit, but at this point it's assumed you have it.
Your monitoring plan is good with the specialist. I have every 6 month blood testing and appointments with my hepatologist...MRCP is every 5 years.

Please keep us updated on how you're doing.
Hugs,
q
Posted 5/26/2023 1:52 PM (GMT 0)
Hey Q,

I got in with a new gastroenterologist last month, he's really good so far! He ordered a bunch of tests and everything came back normal except for my ferritin level which was slightly elevatetd. Yes he did the testing for PBC (antimitochondrial antibodies) and it was negative. Pretty sure I have PSC now. I'm going in for a second MRCP on June 8th, so we'll see if there's any changes or if things are looking stable. I am on URSO right now 250 mg twice a day. He wanted me to go up to 3x a day but at 2x a day it's helping with the itching really well. My ulcerative colitis is still in remission and I am hopeful that being on a whole food plant based diet that it will stay that way. I eat tons of fiber every day now, probably around 70+ grams per day so my gut flora colony has tons of food to thrive on lol... Other than fatigue I'm feeling pretty good~
Posted 5/26/2023 5:13 PM (GMT 0)
Yes, that's what it seems, 😔 I'm glad you were checked for PBC. Hope you likenthe new GI...is he also a liver specialist? Re the URSO...awesome it helps with the itching. You should be on optimum dosage (13 -15 mg per kg body weight). I started on 250 x2 daily, then increased to optimum of 500 x2 daily. I've been on it since 1998.

I hope the MRCP shows no progression..please let us know the results.

Hugs,
q
Posted 5/27/2023 5:11 AM (GMT 0)
Glad to read that UC is back in remission, Susie, and your new gastro seems to know his stuff. Take good care then hopefully the liver comes under control, too. Definitely keep us updated. Beaming positive vibes your way ... / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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