I realy do feel for you,it's obvious from your post just how down you are feeling and it's totaly understandable that you are feeling that way. And you are not "dumb" It's a horrible disease and will make you feel low,so having the worry of Doctors not listening to you and the possabilty of surgery which half the time doesnt get explained properly,your sons wedding etc. You have very good reason to feel this way.
I think the first step is to speak with your GI again. Keeping in mind that this is "your" body and if the medications are not working for you and you realy feel that you want to consider the surgery then tell your GI how you are feeling and if he wont listen then ask for a second opinion. I think I am right in saying that he will have to arrange that for you and if it is arranged through him them maybe the opinion of the second GI won't be seen as "stealing his turf"
I must admit that I have not read all of the posts on the "Total Colectomy" thread. But when someone has that procedure done then usuely they will either have a permenant or tempory Ileostomy, which is when the small intestines(the end of wich is called the Ileum)is brought out onto the stomach and you have a bag attached.Or a J-pouch,where a pouch is formed from the end of the small intestines and it is brought down low inside so that you do go to the toilet in the normal way but because there is no colon, what is passed into the toilet is usuely more watery than a normal bowel movement and from what I have read a person with a J-pouch will use the toilet about
6 times a day once everything has setteld down. I am definatly no expert so if anyone out there believes I have said anything wrong about
this procedure then please feel free to add your 2 cents worth.
When you say that your son is worried about
you "making stinky noises" on his wedding day,I am presuming he is talking about
"the bag" This is something that everyone with a stoma does worry about
but let me assure you that there are many things that you can do to help prevent noises. There are tablets that can be taken to sort of soak up any gas and also things to put in the bag that can help. A stoma nurse or boards like this can always help in that area. and you also learn what you can and cant eat so as to prevent gas. And if you are as fortunate as me then you will hardly get any gas at all reguardless of what you eat. My stoma makes a bit of noise first thing in the morning after my first cup of tea but other than that it's usuely quiet for the rest of the day. My daughter is getting Married in May and I would be lying if I said that I am not concerned at all about
things going wrong such as noises or a leaky bag etc. But the way I look at it is that I havnt had any majour disaster with the bag in over two and a half years,and also if I had not had surgery then there would have been far more chance of me having to run off to the bathroom because of my UC.
I thought that I saw a thread somewhere here that said that the Molocure tablets or whatever it is was now available again. Maybe you will be be able to try that again.
I hope that I have not confused you with my rambalings,and I realy hope that you will be feeling better soon with what ever you decide to do. Please keep us informed.