My hubby has had PSC/UC since 1990. He was diagnosed in 1994 and transplanted in 1998. After the tx he did great for several years. His UC even went into remission. In 2004, the PSC/UC returned. He now has a very large polyp in his colon from the UC. He also has dyplasia throughtout his colon. His liver doctor has told us he is gonna end up with colon cancer unless he has a total colectomy. He had a TIPS shunt placed about a month ago to relieve the portal hypertension and to resolve the esophageal varices he had developed. He did these things to be able to have the total colectomy. Monday he met with the colon surgeon. She told him that in her opinion he was too sick to operate on him right now going by his latest lab work. Going by his lastest labs his MELD score is a 23. She said he could go into liver failure. She said she would talk to his liver doctors and get their opinion and call us with an answer. Anyone else been thru this? Also even though his liver is THAT bad again he isn't even listed yet.
The total colectomy is a pretty significant surgery. My 17 year old son had one in November 2013. He was in the same boat. It took a lot out of him but he recovered faster than expected. They say it can take a year to get back to normal. The worst part for him was the emotional period. He is glad he had it done now but he wasn’t so happy 3 days after surgery. My son was in pretty bad shape too. We had to wait for his cardiologist to clear him. I completely changed his diet after. Following the food list is critical to prevent blockages. I wish you & your husband the best. Stay possitive & research. Second opinions are always advised. I didn’t hesitate to request one.
AJ
Blockages after the colectomy? Do you have a link to the food list?
I'm also interested in the food list- my UC is in remission now, but IBS is debilitating. I'm researching diets and would love to see the food list. Many thanks,
BB
mybuddy20gauge@hotmail.com said:
The total colectomy is a pretty significant surgery. My 17 year old son had one in November 2013. He was in the same boat. It took a lot out of him but he recovered faster than expected. They say it can take a year to get back to normal. The worst part for him was the emotional period. He is glad he had it done now but he wasn't so happy 3 days after surgery. My son was in pretty bad shape too. We had to wait for his cardiologist to clear him. I completely changed his diet after. Following the food list is critical to prevent blockages. I wish you & your husband the best. Stay possitive & research. Second opinions are always advised. I didn't hesitate to request one.
AJ
Here is some food for thought:
http://www.webmd.com/ibd-crohns-disease/ulcerative-colitis/creating-an-ulcerative-colitis-plan
When I had UC, I remember that about the only veggies I would eat were those steamed and/or soft, like peas. A good rule of thumb was that if you can cut a veggie with a fork, you were good. Raw carrots, @$%#$ no, but steamed, yum.