Finally after months of dealing with problems I went to see Dr. Shen..... After talking with him for a few minutes he set me up for a scope so that he could see for himself what was going on. In addition to the scope, he took about 12 vials of blood and a stool sample... After my scope he feels that I do have Crohns, as well as cuffitis, but my pouch itself looks great. I did have a stricture in which he stretched out, but said that he will need to go in and stretch it out again in 4-6 months. We are going to start Pentasa, and Endocort to see if that helps and if not then I am sure he will have a backup plan....
Some notes of interest from our conversation:
He is conducting a saliva test for patients that will participate. the theory is a specific(?) bacteria from your mouth is not being killed by the stomach acid, and it is a potenial cause for pouchitis. He went into it a lot deaper than what I am explaining, but seeing how I was laying on the table about to have my scopes, I was kind of preoccupied... I do remember him saying that a dentist was behind the thought for something dental related...
His first thought was that weight gain was causing the lower pouch and cuff to have the blood flow choked off which he said could cause issues that mimic pouchitis and cuffitis... I have gained about 15lbs. since I had my surgeries. He said that there isn't much room in there especially in males, and that on some patients who gain weight the scar tissue compresses agianst the pouch and chokes the blood supply off. He said that dieting, or surgery could be done to fix that issue if it was an issue with someone.. The surgery would be to cut away the scar tissue some, and cut something to get the blood flowing agian...
There is a new medicine that is getting ready to go to FDA panel (I think that is what he called it) for Ulcerative Colitis, and he said it was going to be BIG!!! He just kept saying that over and over... He had his hands thrown up in the air saying it's going to be big it's a game changer.... Too late for us but maybe it will help someone in the future from having to have this surgery. He made it sound as if it is a biologic but it has been developed specifically for UC not some other disease.. He did say that there is the potential for it to help us, but I am going to assume that it would have to be tested and proved out first, but IDK.....
Anyway its been a long day of traveling, and I am exhausted so off to bed..... I actually have hope agian that these issues can be resolved, and I can go back to having a functioning body agian.... for those who are having issues I like many other will highly suggest going to see Dr. Shen...... There was so much more that we talked about, but I tried to capture the highlights in here for everyone....
Chris
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