My son is 17 & has not responded to Remicade treatments. We are headed to Seattle Children’s Hospital for his third colonoscopy in 6 months. He may lose his colon. I’m praying he doesn’t have cancer. It’s a struggle for him to stay in school. He’s developed enlarged lymph nodes. His PSC seems to be in remission. That’s a plus.
Prayers with you that he not lose his colon and that his UC go into remission. Very grateful to read that his PSC is in remission. Wishing you peace and blessings from God, who shall renew his/your strength: "They shall run and not be weary, They shall walk and not faint." This helped me get through the depths of UC when I nearly lost my colon.
I strongly recommend that you get a consultation for your son with Dr. Kenneth Cox at Stanford University. My daughter was told to go on Remicade and then to consider a colectomy a year ago. After consulting with Dr. Cox and being treated by Dr. Cox she now has a normal colon and a normal liver.
mybuddy20gauge@hotmail.com said:
My son is 17 & has not responded to Remicade treatments. We are headed to Seattle Children's Hospital for his third colonoscopy in 6 months. He may lose his colon. I'm praying he doesn't have cancer. It's a struggle for him to stay in school. He's developed enlarged lymph nodes. His PSC seems to be in remission. That's a plus.
With all due respect, I do not think you should go to her doctor appointments or implore her to do anything. She is educated and has made a decision.
I've changed my thinking since my last response. I have never spoken to a gastroenterologist with any friend or family member present since becoming an adult. I've only had someone present at any type of doctor's appointment or treatment twice, and the person accompanying me waited in the waiting room on those occasions. After a colonoscopy, a friend has talked to the doctor while I was coming to.
I'm very independent. But also, at teaching hospitals, the doctor already has somebody with him. I can't really imagine adding to the number in the room.
But, perhaps, some people really like having somebody with them and would find my approach too lonely. So, ignore my previous comment.
Thank you.
Lainie,
I ran across the website of Sandra Cabot some time ago and was very interested in what I saw. Do you think the Livertone Plus is helpful? Would also like to know more about SAMe. Has any body tried the Gerson Therapy?
Thank you for your helpful comments. No, she is not yet on this forum but I did tell her husband about the site.
angelwings said:
I am only new at this however, all i can say is dont give up. Stay in the fight. Seek different opinions and techniques. Something may change even for a small positive step. You can only advise on current research and findings. Has she looked through this forum? All the best wish your family well.
She is on nothing for her PSC. So far, her yearly ultrasounds and yearly MRIs have not shown any bile duct damage. She used to take Urso, but her liver doctor stopped it about one year ago--he said there wasn't much research that the drug was effective for PSC.
Cactusgirl said:
What is she doing for her PSC? My daughters PSC and UC symptoms totally normalized with oral vancomycin treatment. She takes nothing else for either. But not all vancomycin generics are the same. I am advised by her doc that the Prasco generic works best to get rid of the residual inflammation in the colon. I chose not to put her on remicade. If you choose that route there are 4 new biologics that are much more specifie to the colon and thus less dangerous to the immune system. vedolizumab is one.
Ahhh. Very helpful comment. So you had mild symptoms, but your colon still became diseased. That may be what is going on with my daughter.
wnv0210 said:
Hopefully you can continue to encourage her for a second opinion in regards to the medication. I had UC for 12 years and what I thought was mild. But in 2012 I had a total colectomy. Because they found high grade dysplasia
There is some research and there is more in progress. Understand that there are not many patients so large studies are difficult. OV is very effective for pediatric PSC and has also been shown to be effective for adults.
Mmonas said:
She is on nothing for her PSC. So far, her yearly ultrasounds and yearly MRIs have not shown any bile duct damage. She used to take Urso, but her liver doctor stopped it about one year ago--he said there wasn't much research that the drug was effective for PSC.
Cactusgirl said:What is she doing for her PSC? My daughters PSC and UC symptoms totally normalized with oral vancomycin treatment. She takes nothing else for either. But not all vancomycin generics are the same. I am advised by her doc that the Prasco generic works best to get rid of the residual inflammation in the colon. I chose not to put her on remicade. If you choose that route there are 4 new biologics that are much more specifie to the colon and thus less dangerous to the immune system. vedolizumab is one.