Help - No symptoms!?

Hi,

I was diagnosed with UC last year, but I've never had any of the normal symptoms. I first went to the Drs because I was extremely tired and completely off food, as well as running a slight fever in the evenings. After some blood tests they discovered my liver functions were very high, and after I couple of months I was diagnosed with UC (after several misdiagnoses) and put on steroids, which did the trick. I was also diagnosed with primary sclerosing cholangitis. However, because I don't have the normal symptoms like blood, mucus, running to the bathroom etc I never know if I'm flaring up or not, as it takes a while for me to realise if I'm tired because of the UC or just generally. I've flared up once since and I worried it's happening again. Does anyone else have this? My doctor said it was common for patients with primary sclerosing cholangitis not to have any obvious symptoms.

Any advice or info would be great as to be honest I don't know too much about this disease.

Blood tests, colonoscopy and liver biopsy. My initial diagnosis was autoimmune hepatitis.

I'm not really sure why they did a colonoscopy in the first place, it was after the blood tests and the biopsy. They also did an endoscopy. I think they were checking the entire gastroenterological tract. I've never had any serious abdominal pain. Occasionally I get slight diarrhoea but not enough to make me think something was wrong.

Post Edited (Moloko) : 4/27/2010 2:30:34 PM (GMT-6)

Hi..welcome to the forum.

I've never heard of having UC with no symptoms unless one isn't flaring or has no inflammation in the colon. Some UCers have more exaggerated symptoms with low inflammation and others have more minumal symptoms with more inflammation...but with inflammation, there will for be some symptoms rather than none at all.


So, do you have autoimmune hep or PSC? Were you in a bad state that the doc did a liver biopsy?

Have you been set up to have an MRI for your liver/abdomen? If not, do have one done.

What medications are you on for UC?

Are you on URSO for your PSC?

quincy

No, never heard that and yes, my UC symptoms are extremely obvious. I treat them early, however by increasing the rectal meds to nightly.

Where in the colon is your UC?

What stage of PSC are you? how much of your liver is affected?
You should be on URSO....I don't get why you're not. That will help lower your liver enzymes at least..and it's believed that it can help slow the progression of PSC.

Did you have the biopsy after or before the MRCP?

What exactly are your gastro symptoms since you say you think something is going on.
Your GI should have just taken a quick look to see if the rectum was inflamed, plus the blood test (I'll assume for inflammation). The two do not always match, however.

quincy

When you were diagnosed with pancolitis....do you have a copy of your biopsy results?
If you can get that...it will help regarding the inflammation and cellular changes in your colon...and its parts.

You should push for the urso anyway.

If you have UC...your rectum will be involved. Rather than go into a complicated explanation, it sounds as though your inflammation is very mild, but definitely past the rectum at this point. It could be throught, but extremely mild.

How many times a day are you going?.....The more inflammation the more often you'll be going (unless it's limited to the lower part of the rectum, constipation, hard stool with mucus and friability with bleeding depending on the severity). The higher the inflammation as per location, the looser your stool will get and in conjunction with the inflammation severity, you'll have probably more rectal discomfort, pain upon bms and throbbing/spasming, etc. Nausea and severe gas can fit into the mix....

I don't have pancolitis....mine is limited...but never been as bad as my initial diagnosis considering I've used meds, both oral and rectal.

I'm going to throw a guess....you're male?

How old are you?

Any family members with UC?

Do the homework on both UC and PSC. Even though your symptoms for UC may be minimal, your whole colon has involvement and you should deal with both ends accordingly to keep things as quiet as possible.

My belief, and that's just me....is that keeping the colon quiet will help the PSC stay quiet as well. Once it's kicked into high gear...the term fatal gets scarier and being on a transplant list sucks.

There is a site www.pscpartners.org you should check out for information.
quincy