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Primary Sclerosing Cholangitis

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Posted 4/3/2015 1:20 PM (GMT 0)
For anyone that has been diagnosed with PSC, can you please let me know your symptoms that lead you to see the doc?

The reason I'm asking is because about 6 months or so ago I had a CT scan due to upper right to middle of the low rib cage pain. It came back normal. The pain slowly went away and I very rarely get it now. But one thing that has plagued me for years was yellow stool. I've asked my GI about it several times and didn't seem concerned. Well now my stool is white.

Btw, I have an appt with him on the 14th for a 6th month check up and to schedule my 2 year c-scope.
Posted 4/3/2015 2:56 PM (GMT 0)
Sherry you probably know this.

White stool is not a good sign.

Old Mike

http://www.mayoclinic.org/white-stool/expert-answers/faq-20058216

Posted 4/3/2015 3:26 PM (GMT 0)
White stool could also indicate mucous and be a symptom of UC... just a thought?

I also did a bit of reading on the popular Norman Cousins story and how he treated his Primary Sclerosing Cholangitis issue. He managed to cure it with vitamin C and laughter, which I found pretty cool.
Posted 4/3/2015 5:36 PM (GMT 0)
Yes OM, I know white can't be good.

Guardian, when I say white, I mean as in chalk white, thru and thru.
Posted 4/3/2015 6:04 PM (GMT 0)
Sherry,

I "think" the first place that symptoms usually show up is in blood work. One of the issues with PSC is that most people don't realize that they have PSC until it has advanced to the point where there they almost need a liver transplant. PSC is "usually" very slow moving.

I would definitely start asking for answers about the pale stool, it is something that needs to be thoroughly investigated. Since you have been consistently monitored over the years I wouldn't worry too much about PSC until they find out what is causing this.
Posted 4/3/2015 6:13 PM (GMT 0)
Is your urine darker than normal?

I would tell your GI about the white stool immediately. He should order labs to check your liver function. I wouldn't think he would need to see you in order to order those tests. PSC can present in many different ways, but as I am sure you have read, it could be something else.

I had a liver transplant in 2013, due to PSC. The disease was found by accident after I had my gall bladder removed. During the times that I was ill, I had light stools. They were never completely white, though.
Posted 4/3/2015 6:17 PM (GMT 0)
Dang,


I have somewhat similar symptoms. No IBD, only IBS.

I had blood work done twice to check the liver, both times came back fine.

I am jaundice and have yellow stools and sometimes some white parts.

I asked doctors multiple times about PSC, they told me with severity of my skin colour, if I had PSC other symptoms would also show up by this time.

Also had ultrasound of the liver done, came back fine also.
Posted 4/3/2015 6:37 PM (GMT 0)
When I was on Remicade I would have routine blood work to check my liver functions. My mom is on Remi too and they check her liver functions every few months. So since you are on Remicade, wouldn't labs pick up on any liver changes?
Posted 4/3/2015 6:42 PM (GMT 0)
I'm not sure about anything at this time. Like I said I have an appt with my GI on the 14th so I for sure will bring this up. But the last time I had my blood checked was 6 months ago.
Posted 4/3/2015 8:52 PM (GMT 0)
Hi sherry

Hope all goes well. To put your mind at rest, pale stool (when not caused by infection) is more likely to be gallstones or cysts according to my doctor friend, both of which are very much treatable.

Kev
Posted 4/4/2015 1:38 PM (GMT 0)
Sherry, you mentioned that your last blood test was 6 months ago. In my opinion, you should be getting this done every 2 months, being that you are on remicade. I am on humira, and my doc orders tests every 2 months. Also when you go see your doc, mention this. It is always good to keep your bloods in check often, so if there is a problem, it can be addressed fast. Let us know how it goes.
Posted 4/4/2015 2:27 PM (GMT 0)
Good luck, Iam sure it will be ok!
Posted 4/4/2015 9:03 PM (GMT 0)
Hi Sherry. I have Crohns and PSC. My GI found my PSC from the results of all the changes in my lab work. Was diagnosed with Crohns in '13 and PSC in '14. I was very sick during that time and had tons of labs done. My PSC is between stage 2 and 3. I am taking Humira for the Crohns and feel great. I had labs done in Feb and my GI said my liver is functioning normal "for me". I see him again in May. I will have to continue having labs every 3 months.
Posted 4/5/2015 6:05 PM (GMT 0)
Sherry.....you do need to tell the doc about the white stool.
After blood tests, push for an MRCP before any invasive testing such as ERCP.

you're not jaundiced at all are you?

keep us posted for sure. There are other possibilities other than PSC which should be on the bloot test list.
q
Posted 4/6/2015 1:07 PM (GMT 0)
Thanks for the replies all :) My white stool is now back to it's typical yellow. But I will definitely bring it up with my GI including more frequent blood testing.

Q, no I'm not jaundiced. Not that I can tell anyway.

I hope you all had a nice Easter!
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