Phillip has a lot of headaches, occasional night sweats, trouble sleeping and elevated bilirubin. After researching Gilberts syndrome it looks like these symptoms could be a factor. Can they do anything for Gilberts syndrome?
Gage has been having trouble sleeping. They told me that could be from the prednisone he's on for the inflamation in his liver & colon. He had more blood drawn today. He has been rocking back and forth in pain the past few days and it's always around the same time of day. I ask questions trying to pin point a common factor but he thinks I'm treating him like he's a 6yr old. He's managing his meds on his own and drove himself to have his blood drawn. We go Children's on the 25th. I've read & researched this disease until I'm blue in the face. I feel so lost as a parent. I can't stop worrying but I can't show fear either. I'm trying to stay possitive and go about life as normal but when you watch your child suffer...
I asked so many questions on our last visit but I left feeling like nothing was really answered. I really hate that other people have this disease too but I'm so thankful to be able to compare concerns and reach out for
help.
Seuss said:
Thanks...yes Phillip had a colonoscopy over a year ago. He is supposed to have another one this summer. His UC is under control, but he is having labs drawn weekly for his liver issues.
I have kept a detailed diary for a year and a half. We can't see any pattern other than stress that triggers UC.
Hi,
My name is Paul. The first symptoms of UC occurred in me at 9 or 10 years old. Cramps, diarrhea. I hated going to birthday parties out of embarrassment and fear my system would get upset. I did not know I had it. It would come and go. I remember having a couple of bad attacks in college, but it went into remission. I was also self-conscious when dating because of lots of intestinal noise and having to excuse myself to go to the bathroom. None of my friends had this, and I felt alone and different.
Finally, at age 48, I was diagnosed with UC. I was put on prednisone for 13 months while my whole colon healed. Sleep disturbance is very frequent with steroids like prednisone. So is mood changes and shakiness. Some people get chubby cheeks and get a hump on their back. This will go away, but kids will make fun of you. Another side effect is constant hunger. Really fight this, because you can get fat very quick. Check with your gastro's recommendation on healthy, filling snacks. For me, I was able to eat an apple or a banana to quell my appetite (though I would have preferred a box of cupcakes).
I was diagnosed with PSC at age 61 and had a transplant at age 65. Some would say I am a certified geezer now, but I still am actively enjoying life. I retired from being a teacher, school principal, school business manager and superintendent of schools after 43 years of healthy life. Though I had UC and PSC, I was a runner that ran more than 30,000 miles, an active parent who went family camping, RVing, hiking, canoeing and raised dogs. In spite of my illness, I earned two master's degrees, studied, did research and earned a doctorate. It was not easy, but you might say, I have had a very full life. I became a private pilot and flew for 32 years before my transplant. My family sailed a sailboat. I learned to sail as a young boy and as an adult, sailed 40 to 65 foot racing boats in Lake Michigan and offshore Atlantic Ocean races.
So, tell your son this does not have to stop you from having a full life enjoying athletics, college, marriage, children and all the rest of it. If anything, UC and PSC has given me a greater appreciation for life and a lust to live it to the fullest. Go for it! Even the sky is not the limit.
Paul,
Thank you so much! That made me cry. You have filled me with hope and a new & improved outlook. I need to stay away from the internet. His appetite has increased imensly. Fortunate for me he is craving spinach and fruit. 
You are not a geezer…You are a blessing.
You just made a difference in my life…
Thank you,
Anita
You are very welcome, Anita. Geezers are just kids in wrinkled skin! Paul
mybuddy20gauge@hotmail.com said:
Paul,
Thank you so much! That made me cry. You have filled me with hope and a new & improved outlook. I need to stay away from the internet. His appetite has increased imensly. Fortunate for me he is craving spinach and fruit. :)
You are not a geezer...You are a blessing.
You just made a difference in my life....
Thank you,
Anita
Great post, Paul.
I am 56 and having UC symptoms, Dx with PSC by ERCP two years ago. I read today where folks considered to be placed on Aziathoprine should have an enzyme called TMTP checked, If this is abnormal a lower than normal dose of Aziathoprine is recommended. This came from Lahey Clnic book on UC and PSC. I was put on Aziathorpine a couple months ago but could not stand the level of constipation that resulted.
Anyone have any firsthand knowledge of this?
Endrun: Nay takes it, let me speak to him about it.
I was on Azathioprine. After six months, I developed Pancreatitis (inflammation of the pancreas) and had to stop taking it. I only know that it suppresses your immune system and that is supposed to help you when you have PSC.. Years ago, it was the drug of choice to treat AIDS and HIV.