Help! Who has had their colon removed that has PSC

General
1

My son was diagnosed with UC and PSC 5 years ago. We still have not achieved remission with the UC and we feel like we are waiting for colon cancer. We are running out of RX options and considering colon removal. Phillip is currently taking Humira (which I hate), Azathiaprine and Ursodiol (for liver). He is married…and completes nursing school in May 2016.

2

Seuss, I had my large intestine removed in Dec. 2006 and was diagnosed with psc in April 2013.

How can I help you and your son?

Jeff

3

Many people with PSC/UC have been successful in quieting their UC through the use of oral Vancomycin and it is far easier on the body than other UC meds because it remains in the gut and is never metabolized. In many cases it can also put PSC into remission. There are a number of clinical trials showing improvements in PSC and UC that you can find either searching this site or through a google search.

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JeffDC said:

Seuss, I had my large intestine removed in Dec. 2006 and was diagnosed with psc in April 2013.

How can I help you and your son?

Jeff

5

What is your history with UC and could you tolerate any of the drugs? How long did you suffer before having your colon removed. What is your status with PSC?

6

I

had UC for about 14 tough months before my colon came out-it never went in remission. I took asacol, 6-mp, pentasa, prednisone,, and had three infusions of Remicade. I did not have good success with medication. Both 6-mp and pentasa gave me pancreatitis, Remicade had no effect. The only drug that had any effect was prednisone, and that is only short term., and it had its usual side effects to boot.

So in Dec. 2006, I had a colectomy and a j-pouch created. The recovery was brutal and the number of times I have to go to the bathroom is still high, but I can hold it if I need to-not like diarrhea which uc is known for.

Sometime in 2006, I had an MRI that stated that my kidneys and liver were in good shape, but I do not know if a liver doc would have been able to confirm that about the liver.

In April 2013, I received my psc diagnosis, being told I was on the borderline between moderate and severe damage. I am now at the severe stage, but my meld score is only a 7. My blood work is pretty decent, low platelets, elevated ALP, ALT , GGT and AST levels. Thankfully, my bilirubin levels are within the normal range.

So I have a lot to be thankful about, and I am aware that there is a lot that could drive me crazy if I let it.



Seuss (Phillips mom) said:

What is your history with UC and could you tolerate any of the drugs? How long did you suffer before having your colon removed. What is your status with PSC?
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